@article{bodenheimer_resuscitating_2026,
	title = {Resuscitating {Primary} {Care}: {A} {Triad} of {Patient}, {Clinician}, and {AI} {Coach}},
	copyright = {All rights reserved},
	language = {en},
	journal = {FPM},
	publisher = {American Academy of Family Physicians},
	author = {Bodenheimer, Thomas and Salmi, Liz and Art, Dave Debronk and Delbanco, Tom},
	year = {2026},
	url_paper={https://api.zotero.org/users/14490939/publications/items/R3WI4Z93/file/view}
}

@article{norris_what_2026,
	title = {What {Patients} {Want} from {Clinicians} and {Health} {Systems} as {AI} {Enters} {Clinical} {Care}},
	copyright = {All rights reserved},
	issn = {0884-8734, 1525-1497},
	url = {https://link.springer.com/10.1007/s11606-026-10652-8},
	doi = {10.1007/s11606-026-10652-8},
	language = {en},
	urldate = {2026-08-04},
	journal = {Journal of General Internal Medicine},
	author = {Norris, Amanda and Sarabu, Chethan and Salmi, Liz and DesRoches, Catherine M.},
	month = jul,
	year = {2026},
	url_paper={https://api.zotero.org/users/14490939/publications/items/NCWFEXLT/file/view}
}

@article{kwan_community_2026,
	title = {Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research},
	volume = {9},
	copyright = {All rights reserved},
	issn = {26673215},
	url = {https://linkinghub.elsevier.com/retrieve/pii/S2667321526000430},
	doi = {10.1016/j.ssmqr.2026.100741},
	abstract = {This study explores community perspectives on operationalizing ethical values in genomic research involving individuals with low grade glioma (LGG) brain tumors – a condition in which genomic characterization is central to diagnosis, prognosis, and treatment. We conducted qualitative directed content analysis of data generated in the course of 11 facilitated engagement discussions conducted via a research advisory council and established brain tumor communities on social media with LGG genomic research community members—including patients, care partners, clinicians, and researchers. This analysis of data from LGG community engagement examines how operationalizing ethical values of autonomy, privacy, ownership, and relevance may guide participant recruitment, communication, and return of results LGG genomic studies. Engagement participants expressed strong support for receiving both individual and aggregate research results, viewing this as a matter of reciprocity and recognition for contributions to research. While engagement participants valued transparency and control over their data and specimens, many held misconceptions about research processes, including the clinical applicability of research findings and the logistics of specimen use. These findings highlight a gap between potential research participant expectations and current LGG genomic research practices, underscoring the need for clear communication and ethically-grounded participant engagement strategies. This analysis informed LGG genomic research participant recruitment and communication practices, including priorities for returning research results and clarifying data and specimen ownership in LGG genomic research.},
	language = {en},
	urldate = {2026-08-04},
	journal = {SSM - Qualitative Research in Health},
	author = {Kwan, Bethany M. and Barnard, Juliana G. and Ritger, Carly and Staton, Elizabeth W. and Perkins, Ifeoma and Gonzalez-Fisher, Ricardo and Lennox, Lindsay A. and Gay, Nestelynn and Johnson, Kevin C. and Verhaak, Roel G.W. and Claus, Elizabeth B. and DeCamp, Matthew and Salmi, Liz},
	month = jun,
	year = {2026},
	pages = {100741},
	url_paper={https://api.zotero.org/users/14490939/publications/items/L2WA57QG/file/view}
}

This study explores community perspectives on operationalizing ethical values in genomic research involving individuals with low grade glioma (LGG) brain tumors – a condition in which genomic characterization is central to diagnosis, prognosis, and treatment. We conducted qualitative directed content analysis of data generated in the course of 11 facilitated engagement discussions conducted via a research advisory council and established brain tumor communities on social media with LGG genomic research community members—including patients, care partners, clinicians, and researchers. This analysis of data from LGG community engagement examines how operationalizing ethical values of autonomy, privacy, ownership, and relevance may guide participant recruitment, communication, and return of results LGG genomic studies. Engagement participants expressed strong support for receiving both individual and aggregate research results, viewing this as a matter of reciprocity and recognition for contributions to research. While engagement participants valued transparency and control over their data and specimens, many held misconceptions about research processes, including the clinical applicability of research findings and the logistics of specimen use. These findings highlight a gap between potential research participant expectations and current LGG genomic research practices, underscoring the need for clear communication and ethically-grounded participant engagement strategies. This analysis informed LGG genomic research participant recruitment and communication practices, including priorities for returning research results and clarifying data and specimen ownership in LGG genomic research.

@article{salmi_adaptive_2026,
	title = {Adaptive driving after brain surgery: {The} hidden costs of neurological disability},
	volume = {13},
	copyright = {https://academic.oup.com/pages/standard-publication-reuse-rights},
	issn = {2054-2577, 2054-2585},
	shorttitle = {Adaptive driving after brain surgery},
	url = {https://academic.oup.com/nop/article/13/4/828/8490776},
	doi = {10.1093/nop/npag013},
	language = {en},
	number = {4},
	urldate = {2026-08-04},
	journal = {Neuro-Oncology Practice},
	author = {Salmi, Liz},
	month = aug,
	year = {2026},
	pages = {828--829},
	url_paper={https://api.zotero.org/users/14490939/publications/items/S2J754JQ/file/view}
}

@article{suresh_advancing_2025,
	title = {Advancing cancer care through digital access in the {USA}: a state-of-the-art review of patient portals in oncology},
	volume = {4},
	copyright = {Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License},
	issn = {2752-7948},
	shorttitle = {Advancing cancer care through digital access in the {USA}},
	url = {https://bmjoncology.bmj.com/lookup/doi/10.1136/bmjonc-2024-000432},
	doi = {10.1136/bmjonc-2024-000432},
	abstract = {Patient portal use among patients with cancer has increased significantly in recent years. This state-ofthe-art review seeks to address and analyse literature involving patient portal use by patients with cancer and their care partners. In this review, we queried articles from PubMed published between January 2018 and April 2024 that describe recent trends and the current presence of portals in cancer care for patients, proxy users and/ or care partners. We searched for articles addressing three overarching themes: (1) trends and disparities in portal adoption and use among patients with cancer, (2) use of specific portal components and functions in cancer care and (3) associations between portal use and cancer-related outcomes. Our search identified 278 unique studies, of which 82 were relevant empiric studies that met inclusion criteria and were included in this review. These papers aligned with 12 subthemes, including disparities in patient portal access, growing use of telemedicine via patient portal and patient access to immediately available to electronic health information. Our findings indicate that patient portals play an increasingly important role in helping patients manage their cancer care, despite few disparities that contribute to inequitable use. However, despite consistent growth in use over recent years, there are many areas for improvement in how portals support patients with cancer and a demand for functionality to continually evolve with patient needs.},
	language = {en},
	number = {1},
	urldate = {2026-08-06},
	journal = {BMJ Oncology},
	author = {Suresh, Uday and Ancker, Jessica and Salmi, Liz and Diamond, Lisa and Rosenbloom, Trent and Steitz, Bryan},
	month = jan,
	year = {2025},
	pages = {e000432},
	url_paper={https://api.zotero.org/users/14490939/publications/items/U2KBY3BD/file/view}
}

Patient portal use among patients with cancer has increased significantly in recent years. This state-ofthe-art review seeks to address and analyse literature involving patient portal use by patients with cancer and their care partners. In this review, we queried articles from PubMed published between January 2018 and April 2024 that describe recent trends and the current presence of portals in cancer care for patients, proxy users and/ or care partners. We searched for articles addressing three overarching themes: (1) trends and disparities in portal adoption and use among patients with cancer, (2) use of specific portal components and functions in cancer care and (3) associations between portal use and cancer-related outcomes. Our search identified 278 unique studies, of which 82 were relevant empiric studies that met inclusion criteria and were included in this review. These papers aligned with 12 subthemes, including disparities in patient portal access, growing use of telemedicine via patient portal and patient access to immediately available to electronic health information. Our findings indicate that patient portals play an increasingly important role in helping patients manage their cancer care, despite few disparities that contribute to inequitable use. However, despite consistent growth in use over recent years, there are many areas for improvement in how portals support patients with cancer and a demand for functionality to continually evolve with patient needs.

@article{vanka_guidelines_2025,
	title = {Guidelines for {Patient}-{Centered} {Documentation} in the {Era} of {Open} {Notes}: {Qualitative} {Study}},
	volume = {11},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {2369-3762},
	shorttitle = {Guidelines for {Patient}-{Centered} {Documentation} in the {Era} of {Open} {Notes}},
	url = {https://mededu.jmir.org/2025/1/e59301},
	doi = {10.2196/59301},
	abstract = {Background: Patients in the United States have recently gained federally mandated, free, and ready electronic access to clinicians’ computerized notes in their medical records (“open notes”). This change from longstanding practice can benefit patients in clinically important ways, but studies show some patients feel judged or stigmatized by words or phrases embedded in their records. Therefore, it is imperative that clinicians adopt documentation techniques that help both to empower patients and minimize potential harms.
Objective: At a time when open and transparent communication among patients, families, and clinicians can spread more easily throughout medical practice, this inquiry aims to develop informed guidelines for documentation in medical records.
Methods: Through a series of focus groups, preliminary guidelines for documentation language in medical records were developed by health professionals and patients. Using a structured focus group decision guide, we conducted 4 group meetings with different sets of 27 participants: physicians experienced with writing open notes (n=5), patients accustomed to reviewing their notes (n=8), medical student educators (n=7), and resident physicians (n=7). To generate themes, we used an iterative coding process. First-order codes were grouped into second-order themes based on the commonality of meanings.
Results: The participants identified 10 important guidelines as a preliminary framework for developing notes sensitive to patients’ needs.
Conclusions: The process identified 10 discrete themes that can help clinicians use and spread patient-centered documentation. (JMIR Med Educ 2025;11:e59301) doi: 10.2196/59301},
	language = {en},
	urldate = {2026-08-06},
	journal = {JMIR Medical Education},
	author = {Vanka, Anita and Johnston, Katherine T and Delbanco, Tom and DesRoches, Catherine M and Garcia, Annalays and Salmi, Liz and Blease, Charlotte},
	month = jan,
	year = {2025},
	pages = {e59301},
	url_paper={https://api.zotero.org/users/14490939/publications/items/CZHI64SB/file/view}
}

Background: Patients in the United States have recently gained federally mandated, free, and ready electronic access to clinicians’ computerized notes in their medical records (“open notes”). This change from longstanding practice can benefit patients in clinically important ways, but studies show some patients feel judged or stigmatized by words or phrases embedded in their records. Therefore, it is imperative that clinicians adopt documentation techniques that help both to empower patients and minimize potential harms. Objective: At a time when open and transparent communication among patients, families, and clinicians can spread more easily throughout medical practice, this inquiry aims to develop informed guidelines for documentation in medical records. Methods: Through a series of focus groups, preliminary guidelines for documentation language in medical records were developed by health professionals and patients. Using a structured focus group decision guide, we conducted 4 group meetings with different sets of 27 participants: physicians experienced with writing open notes (n=5), patients accustomed to reviewing their notes (n=8), medical student educators (n=7), and resident physicians (n=7). To generate themes, we used an iterative coding process. First-order codes were grouped into second-order themes based on the commonality of meanings. Results: The participants identified 10 important guidelines as a preliminary framework for developing notes sensitive to patients’ needs. Conclusions: The process identified 10 discrete themes that can help clinicians use and spread patient-centered documentation. (JMIR Med Educ 2025;11:e59301) doi: 10.2196/59301

@article{decamp_engagement_2025,
	title = {Engagement {Methods} in {Brain} {Tumor} {Genomic} {Research}: {Multimethod} {Comparative} {Study}},
	volume = {17},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {2152-7202},
	shorttitle = {Engagement {Methods} in {Brain} {Tumor} {Genomic} {Research}},
	url = {https://jopm.jmir.org/2025/1/e68852},
	doi = {10.2196/68852},
	abstract = {Background: Engaging patients, care partners, and others in research planning and conduct is increasingly valued. However, identifying the most effective ways to do so remains a challenge. Objective: This study aimed to evaluate participation and participant experience using 3 engagement methods with the Low-Grade Glioma (LGG) Registry’s Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma (OPTIMUM) project, part of the National Cancer Institute’s Participant Engagement and Cancer Genome Sequencing Network.},
	language = {en},
	urldate = {2026-08-06},
	journal = {Journal of Participatory Medicine},
	author = {DeCamp, Matthew and Barnard, Juliana G and Ritger, Carly and Helmkamp, Laura J and Begum, Anowara and Garcia-Hernandez, Sandra and Fischmann, Rudy and Gay, Nestelynn and Gonzalez-Fisher, Ricardo and Johnson, Kevin C and Lennox, Lindsay A and Lipof, Guy R and Ostmeyer, Jasmyn and Perkins, Ifeoma and Pyle, Laura and Salmi, Liz and Thompson, Talia and Claus, Elizabeth B and Verhaak, Roel and Kwan, Bethany M},
	month = aug,
	year = {2025},
	pages = {e68852},
	url_paper={https://api.zotero.org/users/14490939/publications/items/WGR98EWL/file/view}
}

Background: Engaging patients, care partners, and others in research planning and conduct is increasingly valued. However, identifying the most effective ways to do so remains a challenge. Objective: This study aimed to evaluate participation and participant experience using 3 engagement methods with the Low-Grade Glioma (LGG) Registry’s Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma (OPTIMUM) project, part of the National Cancer Institute’s Participant Engagement and Cancer Genome Sequencing Network.

@article{crossnohere_optimizing_2025,
	title = {Optimizing participant and community engagement in cancer genomic sequencing research},
	volume = {27},
	copyright = {All rights reserved},
	issn = {10983600},
	url = {https://linkinghub.elsevier.com/retrieve/pii/S1098360025001303},
	doi = {10.1016/j.gim.2025.101483},
	abstract = {Purpose: We describe strategies implemented across research centers of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network to optimize engagement of participants and communities in cancer genomics research. We also present consensus definitions of engagement and engagement optimization, informed by our shared experiences in the Network.
Methods: Key informant interviews and a document review identified engagement and optimization strategies across PE-CGS research centers. Findings were synthesized using qualitative content analysis. Consensus on definitions of engagement and optimization were developed through iterative review by PE-CGS members.
Results: PE-CGS research centers adopted tailored strategies based on community needs and scientific gaps. Engagement strategies included community-based efforts (eg, advisory boards and newsletters) and participant-focused approaches (eg, enhanced informed consent and decision support tools). Optimization strategies leveraged scientific methods (eg, randomized controlled trials and surveys) to evaluate engagement. Engagement was described as the sustained and meaningful interactions between researchers, participants, and communities. Optimization was described as the application of scientific methods to refine and improve engagement and research processes and outcomes.
Conclusion: Engagement and optimization strategies have informed research planning, conduct, and dissemination across PE-CGS. These approaches and definitions provide a foundation for developing evidence-based practices to strengthen participant and community involvement in cancer genomics research.},
	language = {en},
	number = {9},
	urldate = {2026-08-06},
	journal = {Genetics in Medicine},
	author = {Crossnohere, Norah L. and Schuster, Anne L.R. and Blair, Cindy K. and Bland, Hasani and Carpten, John D. and Claus, Elizabeth B. and Colditz, Graham A. and Diehl, Diane and Ding, Li and Drake, Bettina F. and Fields, Ryan C. and George, Suzanne and Janeway, Katherine and Kim, Hyoshin and Lenz, Heinz-Josef and Mack, Jennifer W. and Ricker, Charité and Stern, Mariana C. and Sussman, Andrew and Trent, Jeffrey and Van Allen, Eliezer and Verhaak, Roel and Willman, Cheryl and Bridges, John F.P. and Mishra, Shiraz I. and Kwan, Bethany M. and Toriola, Adetunji T. and James, Aimee S. and Anandarajah, Akila and Tomkinson, Alan and Church, Alanna and Lai, Albert M. and Toland, Amanda and Sussman, Andrew and Heffernan, Anne E. and Noriega, Ashley and Martin-Giacalone, Bailey A. and Tew, Ben Yi and Davis, Bethany and Kwan, Bethany M. and Drake, Bettina and Rosales, Bianca and Ovalle, Blanca and Salhia, Bodour and Crompton, Brian and Chavez, Carmen E. and Cibulskis, Carrie and Stoll, Carrie and Lerman, Caryn and DesRoches, Catherine and Raut, Chandrajit and Ricker, Charité N. and Wiggins, Charles and Willman, Cheryl and Marx, Christine M. and Blair, Cindy and Rubalcava, Crystal and Hernandez, Daisy and Craig, David and Engelthaler, David and Merrell, David and Spencer, David and Wallace, Dean and MacKenzie, Debra and McCance, Dennis and Diehl, Diane and Siegal-Botti, Eirian and Taylor, Elena and Van Allen, Eliezer and Claus, Elizabeth B. and Velazquez-Villarreal, Enrique and Duncavage, Eric J. and Linnenbringer, Erin Lynn and Ceca, Evelina and Wan, Fei and Chen, Feng and Rodrigues, Fernanda Martins and Carranza, Francisco G. and Getz, Gad and Gooden, Gerald and Cross, Grace and Colditz, Graham A. and Dart, Hank and Hampel, Heather and Lenz, Heinz-Josef and Clark, Hershel and Kang, Huining and Kim, Hyoshin and Shulman, Ira and Ulloa, Itzya and Lowey, James and Gauderman, James W. and Rodriguez, Janet and Hornick, Jason L. and MacKeigan, Jeff and Henderson, Jeffrey and Trent, Jeffrey and Mack, Jennifer and Tsui, Jennifer and Mozersky, Jessica and Sanchez, Jessica and Stopfer, Jill and McElroy, Joe and Mendez, Joel Sanchez and Carpten, John and Bridges, John F.P. and Keats, Jonathan and Vega, Joseph and Lewinger, Juan Pablo and Garber, Judy and Wong, Julia M.W. and Barnard, Juliana and Fortier, Julie and Culver, Julie O. and Kyte, Kalin and Janeway, Katherine A. and Lee, Keehoon and Pettes, Kelsey and Johnson, Kevin C. and Hall, Kevin and Lim, Kian H. and Vij, Kiran and Blackwater, Koby and Fisher, Lauren and Ding, Li and Zhang, Linbin and Lennox, Lindsay and Salmi, Liz and Garbanati, Lourdes Baezconde- and Enriquez, Lucia L. and Postel, Mackenzie and Smart, Maeve and Quetawki, Mallery and Stern, Mariana C. and Fiala, Mark A. and Watson, Mark A. and Politi, Mary C. and DeCamp, Matthew W. and Bachini, Melinda and Wendl, Michael C. and Hochman, Michael and Slade, Michael and Kosich, Mikaela and Gutierrez, Natalia C. and Schork, Nicholas and Hamblet, Nicole and Pollock, Nijole and Elia, Noriela and Bhattacharyya, Oindrila and Chastain, Parker and Dickson, Patricia I. and Henderson, Patricia Nez and Merriam, Priscilla and Jaffal, Raed and Mehta, Rajni and Chavez, Raven and Vij, Ravi and Jayasinghe, Reyka G. and Gonzalez-Fisher, Ricardo and Verhaak, Roel and Barahona, Rosa and Du, Rose and Fields, Ryan C. and Algaze, Sandra and Byron, Sara and Rajpara, Seeta and Ovalle, Serina and Lee-Sin, Shannon and Ryan, Shawnia and Mishra, Shiraz and Gabriel, Stacey and Gray, Stacy and Cargill, Stephanie Solomon and George, Suzanne and Iqbal, Syma and Hendrickson, Taisha and Chowdhury, Tamrin and Boyce, Tawny and Rebbeck, Timothy and Whitsett, Timothy and Glaberman, Ursa Brown- and Pankratz, V. Shane and Yamamoto, Vicky and Cao, Yin and Amzaleg, Yonatan and Crees, Zachary},
	month = sep,
	year = {2025},
	pages = {101483},
	url_paper={https://api.zotero.org/users/14490939/publications/items/BIW74IRR/file/view}
}

Purpose: We describe strategies implemented across research centers of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network to optimize engagement of participants and communities in cancer genomics research. We also present consensus definitions of engagement and engagement optimization, informed by our shared experiences in the Network. Methods: Key informant interviews and a document review identified engagement and optimization strategies across PE-CGS research centers. Findings were synthesized using qualitative content analysis. Consensus on definitions of engagement and optimization were developed through iterative review by PE-CGS members. Results: PE-CGS research centers adopted tailored strategies based on community needs and scientific gaps. Engagement strategies included community-based efforts (eg, advisory boards and newsletters) and participant-focused approaches (eg, enhanced informed consent and decision support tools). Optimization strategies leveraged scientific methods (eg, randomized controlled trials and surveys) to evaluate engagement. Engagement was described as the sustained and meaningful interactions between researchers, participants, and communities. Optimization was described as the application of scientific methods to refine and improve engagement and research processes and outcomes. Conclusion: Engagement and optimization strategies have informed research planning, conduct, and dissemination across PE-CGS. These approaches and definitions provide a foundation for developing evidence-based practices to strengthen participant and community involvement in cancer genomics research.

@article{campos_critical_2025,
	address = {Washington, DC},
	title = {Critical {AI} {Health} {Literacy} as {Liberation} {Technology}:},
	copyright = {All rights reserved},
	url = {https://nam.edu/perspectives/critical-ai-health-literacy-as-liberation-technology-a-new-skill-for-patient-empowerment/},
	doi = {https://doi.org/10.31478/202512a},
	language = {en},
	journal = {NAM Perspectives},
	publisher = {National Academy of Medicine},
	author = {Campos, Hugo and Salmi, Liz},
	year = {2025},
	url_paper={https://api.zotero.org/users/14490939/publications/items/T5HRVZKL/file/view}
}

@article{dukhanin_users_2025,
	title = {Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals},
	volume = {25},
	copyright = {All rights reserved},
	issn = {1472-6963},
	url = {https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-025-12755-0},
	doi = {10.1186/s12913-025-12755-0},
	abstract = {Background Many patient portals allow patients to authorize a care partner to use the portal on their behalf, with evidence suggesting a range of benefits to patients, care partners, and clinicians. Shared or proxy access aligns with patient- and family-centered care and supports care partners’ legitimacy and identification by clinicians in patient portal interactions. As shared access uptake remains low, the Coalition for Care Partners (https://coalitionforcarepartn ers.org) and three healthcare delivery organizations co-designed an initiative promoting shared access to the patient portals of older adults.},
	language = {en},
	number = {1},
	urldate = {2026-08-04},
	journal = {BMC Health Services Research},
	author = {Dukhanin, Vadim and Wolff, Jennifer L. and Gleason, Kelly and Wachenheim, Deborah and Salmi, Liz and Gonzales, Matthew J. and Parshley, Marianne and Epstein, Sara and Mohile, Supriya and Farrell, Timothy W. and Supiano, Mark A. and DesRoches, Catherine M. and {the Shared Access Project Team} and Peereboom, Danielle and Roth, David L. and Wu, Mingche M. J. and Niehus, Doug and Reay, Caroline and DelVecchio, Jill and Fear, Kathleen and Kenyon, Martha and Sharma, Saloni and Tadehara, Diane and Wells, Shawn},
	month = apr,
	year = {2025},
	pages = {586},
	url_paper={https://api.zotero.org/users/14490939/publications/items/PVXJRTHM/file/view}
}

Background Many patient portals allow patients to authorize a care partner to use the portal on their behalf, with evidence suggesting a range of benefits to patients, care partners, and clinicians. Shared or proxy access aligns with patient- and family-centered care and supports care partners’ legitimacy and identification by clinicians in patient portal interactions. As shared access uptake remains low, the Coalition for Care Partners (https://coalitionforcarepartn ers.org) and three healthcare delivery organizations co-designed an initiative promoting shared access to the patient portals of older adults.

@article{steitz_repeated_2025,
	title = {Repeated {Access} to {Patient} {Portal} {While} {Awaiting} {Test} {Results} and {Patient}-{Initiated} {Messaging}},
	volume = {8},
	copyright = {All rights reserved},
	issn = {2574-3805},
	url = {https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2832287},
	doi = {10.1001/jamanetworkopen.2025.4019},
	abstract = {OBJECTIVE To describe characteristics of patients who refresh their portal while awaiting test results and measure the association between refresh behavior and patient-initiated messaging. DESIGN, SETTING, AND PARTICIPANTS This retrospective cross-sectional study was performed at Vanderbilt University Medical Center, which uses a MyChart-based patient portal. All adult patients (aged 18 years) who received outpatient test results between January 1, 2022, and December 31, 2023, were included. EXPOSURES Use of the patient portal to review test results. MAIN OUTCOMES AND MEASURES The primary outcome was the proportion of patients who refreshed the portal while awaiting test results. Tests were stratified into low-sensitivity (eg, basic metabolic panel) and high-sensitivity (eg, tissue biopsy) groups using validated categories based on each test’s likelihood of being misinterpreted or causing distress. Portal access logs were used to identify refresh behaviors, in which patients accessed the portal seeking new results. Secondary outcomes included the association between patient characteristics and refresh behavior and between refresh behavior and messaging as measured using multivariable logistic regression.
RESULTS A total of 968 774 results were reviewed by 290 349 patients (mean [SD] age, 47.8 [18.0] years; 66.3\% female). Patients refreshed their portal for 25.9\% of results. Patients more commonly refreshed for high-sensitivity results (25 280 of 64 356 [39.3\%]) compared with low sensitivity results (225 516 of 904 418 [24.9\%]) (P {\textless} .001). Patients who enabled notifications had higher odds of refreshing for high-sensitivity results (odds ratio, 1.11; 95\% CI, 1.06-1.17) and low-sensitivity results (odds ratio, 1.54; 95\% CI, 1.49-1.59). Each refresh for high-sensitivity results was associated with a lower increase in the probability of messaging within 24 hours (mean marginal effect, 0.41; 95\% CI, 0.34-0.49) compared with refreshing for low-sensitivity results (mean marginal effect, 1.03; 95\% CI, 0.96-1.11).
CONCLUSION AND RELEVANCE This cross-sectional study found an association of patients’ refresh activity for low-sensitivity results with patient-initiated messaging after review. These findings suggest that refresh behavior, a potential measure of worry, may be a characteristic of patient attitudes and preferences rather than the test.},
	language = {en},
	number = {4},
	urldate = {2026-08-04},
	journal = {JAMA Network Open},
	author = {Steitz, Bryan D. and Turer, Robert W. and Salmi, Liz and Suresh, Uday and MacDonald, Scott and DesRoches, Catherine M. and Wright, Adam and Louissaint, Jeremy and Rosenbloom, S. Trent},
	month = apr,
	year = {2025},
	pages = {e254019},
	url_paper={https://api.zotero.org/users/14490939/publications/items/ZQ8ZP76C/file/view}
}

OBJECTIVE To describe characteristics of patients who refresh their portal while awaiting test results and measure the association between refresh behavior and patient-initiated messaging. DESIGN, SETTING, AND PARTICIPANTS This retrospective cross-sectional study was performed at Vanderbilt University Medical Center, which uses a MyChart-based patient portal. All adult patients (aged 18 years) who received outpatient test results between January 1, 2022, and December 31, 2023, were included. EXPOSURES Use of the patient portal to review test results. MAIN OUTCOMES AND MEASURES The primary outcome was the proportion of patients who refreshed the portal while awaiting test results. Tests were stratified into low-sensitivity (eg, basic metabolic panel) and high-sensitivity (eg, tissue biopsy) groups using validated categories based on each test’s likelihood of being misinterpreted or causing distress. Portal access logs were used to identify refresh behaviors, in which patients accessed the portal seeking new results. Secondary outcomes included the association between patient characteristics and refresh behavior and between refresh behavior and messaging as measured using multivariable logistic regression. RESULTS A total of 968 774 results were reviewed by 290 349 patients (mean [SD] age, 47.8 [18.0] years; 66.3% female). Patients refreshed their portal for 25.9% of results. Patients more commonly refreshed for high-sensitivity results (25 280 of 64 356 [39.3%]) compared with low sensitivity results (225 516 of 904 418 [24.9%]) (P \textless .001). Patients who enabled notifications had higher odds of refreshing for high-sensitivity results (odds ratio, 1.11; 95% CI, 1.06-1.17) and low-sensitivity results (odds ratio, 1.54; 95% CI, 1.49-1.59). Each refresh for high-sensitivity results was associated with a lower increase in the probability of messaging within 24 hours (mean marginal effect, 0.41; 95% CI, 0.34-0.49) compared with refreshing for low-sensitivity results (mean marginal effect, 1.03; 95% CI, 0.96-1.11). CONCLUSION AND RELEVANCE This cross-sectional study found an association of patients’ refresh activity for low-sensitivity results with patient-initiated messaging after review. These findings suggest that refresh behavior, a potential measure of worry, may be a characteristic of patient attitudes and preferences rather than the test.

@article{desroches_designing_2025,
	title = {Designing for {Techquity}: {Ensuring} {Open} {Notes} {Serve} {All} {Patients}},
	copyright = {All rights reserved},
	issn = {2473-4276},
	shorttitle = {Designing for {Techquity}},
	url = {https://ascopubs.org/doi/10.1200/CCI-25-00290},
	doi = {10.1200/CCI-25-00290},
	language = {en},
	number = {9},
	urldate = {2026-08-04},
	journal = {JCO Clinical Cancer Informatics},
	author = {DesRoches, Catherine M. and Salmi, Liz},
	month = dec,
	year = {2025},
	pages = {e2500290},
	url_paper={https://api.zotero.org/users/14490939/publications/items/342WPFBJ/file/view}
}

@article{salmi_proof--concept_2025,
	title = {A proof-of-concept study for patient use of open notes with large language models},
	volume = {8},
	copyright = {All rights reserved},
	issn = {2574-2531},
	url = {https://academic.oup.com/jamiaopen/article/doi/10.1093/jamiaopen/ooaf021/8109288},
	doi = {10.1093/jamiaopen/ooaf021},
	abstract = {Objectives: The use of large language models (LLMs) is growing for both clinicians and patients. While researchers and clinicians have explored LLMs to manage patient portal messages and reduce burnout, there is less documentation about how patients use these tools to understand clinical notes and inform decision-making. This proof-of-concept study examined the reliability and accuracy of LLMs in responding to patient queries based on an open visit note. Materials and Methods: In a cross-sectional proof-of-concept study, 3 commercially available LLMs (ChatGPT 4o, Claude 3 Opus, Gemini 1.5) were evaluated using 4 distinct prompt series—Standard, Randomized, Persona, and Randomized Persona—with multiple questions, designed by patients, in response to a single neuro-oncology progress note. LLM responses were scored by the note author (neuro-oncologist) and a patient who receives care from the note author, using an 8-criterion rubric that assessed Accuracy, Relevance, Clarity, Actionability, Empathy/Tone, Completeness, Evidence, and Consistency. Descriptive statistics were used to summarize the performance of each LLM across all prompts.
Results: Overall, the Standard and Persona-based prompt series yielded the best results across all criterion regardless of LLM. Chat-GPT 4o using Persona-based prompts scored highest in all categories. All LLMs scored low in the use of Evidence. Discussion: This proof-of-concept study highlighted the potential for LLMs to assist patients in interpreting open notes. The most effective LLM responses were achieved by applying Persona-style prompts to a patient’s question.
Conclusion: Optimizing LLMs for patient-driven queries, and patient education and counseling around the use of LLMs, have potential to enhance patient use and understanding of their health information.},
	language = {en},
	number = {2},
	urldate = {2026-08-04},
	journal = {JAMIA Open},
	author = {Salmi, Liz and Lewis, Dana M and Clarke, Jennifer L and Dong, Zhiyong and Fischmann, Rudy and McIntosh, Emily I and Sarabu, Chethan R and DesRoches, Catherine M},
	month = mar,
	year = {2025},
	pages = {ooaf021},
	url_paper={https://api.zotero.org/users/14490939/publications/items/4G45ZUBB/file/view}
}

Objectives: The use of large language models (LLMs) is growing for both clinicians and patients. While researchers and clinicians have explored LLMs to manage patient portal messages and reduce burnout, there is less documentation about how patients use these tools to understand clinical notes and inform decision-making. This proof-of-concept study examined the reliability and accuracy of LLMs in responding to patient queries based on an open visit note. Materials and Methods: In a cross-sectional proof-of-concept study, 3 commercially available LLMs (ChatGPT 4o, Claude 3 Opus, Gemini 1.5) were evaluated using 4 distinct prompt series—Standard, Randomized, Persona, and Randomized Persona—with multiple questions, designed by patients, in response to a single neuro-oncology progress note. LLM responses were scored by the note author (neuro-oncologist) and a patient who receives care from the note author, using an 8-criterion rubric that assessed Accuracy, Relevance, Clarity, Actionability, Empathy/Tone, Completeness, Evidence, and Consistency. Descriptive statistics were used to summarize the performance of each LLM across all prompts. Results: Overall, the Standard and Persona-based prompt series yielded the best results across all criterion regardless of LLM. Chat-GPT 4o using Persona-based prompts scored highest in all categories. All LLMs scored low in the use of Evidence. Discussion: This proof-of-concept study highlighted the potential for LLMs to assist patients in interpreting open notes. The most effective LLM responses were achieved by applying Persona-style prompts to a patient’s question. Conclusion: Optimizing LLMs for patient-driven queries, and patient education and counseling around the use of LLMs, have potential to enhance patient use and understanding of their health information.

@article{salmi_robert_2025,
	title = {Robert {F} {Kennedy} {Jr}’s proposal to remove public commentary from {US} health policy is a threat to science and public health},
	copyright = {All rights reserved},
	issn = {1756-1833},
	url = {https://www.bmj.com/lookup/doi/10.1136/bmj.r676},
	doi = {10.1136/bmj.r676},
	language = {en},
	urldate = {2026-08-04},
	journal = {BMJ},
	author = {Salmi, Liz and Walker, Jan and Delbanco, Tom and DesRoches, Catherine M},
	month = apr,
	year = {2025},
	pages = {r676},
	url_paper={https://api.zotero.org/users/14490939/publications/items/LTN5N457/file/view}
}

@article{scerpella_solutions_2025,
	title = {Solutions for {Increased} {Adoption} of {Patient} {Portal} {Shared} {Access}: {A} {Human}-{Centered} {Design} {Approach} {Using} the {Double} {Diamond} {Model}},
	volume = {16},
	copyright = {https://creativecommons.org/licenses/by/4.0/},
	issn = {1869-0327},
	shorttitle = {Solutions for {Increased} {Adoption} of {Patient} {Portal} {Shared} {Access}},
	url = {http://www.thieme-connect.de/DOI/DOI?10.1055/a-2710-4288},
	doi = {10.1055/a-2710-4288},
	abstract = {Background Achieving digital health equity and proper use of identity credentials is crucial as reliance on electronic modalities increases. Proxy access—now increasingly referred to as shared access—is a widely available functionality that offers identity credentials to care partners who assist loved ones in navigating the electronic care delivery demands of patients with complex care needs. However, adoption of these tools has been hindered by complicated user interfaces and low awareness.},
	language = {en},
	number = {05},
	urldate = {2026-08-04},
	journal = {Applied Clinical Informatics},
	author = {Scerpella, Danny L. and Salmi, Liz and Hurwitz, Isabel and Norris, Amanda and McDaniel, Kennedy and Epstein, Sara and Wolff, Jennifer L. and DesRoches, Catherine M.},
	month = oct,
	year = {2025},
	pages = {1728--1737},
	url_paper={https://api.zotero.org/users/14490939/publications/items/QP9QE5EG/file/view}
}

Background Achieving digital health equity and proper use of identity credentials is crucial as reliance on electronic modalities increases. Proxy access—now increasingly referred to as shared access—is a widely available functionality that offers identity credentials to care partners who assist loved ones in navigating the electronic care delivery demands of patients with complex care needs. However, adoption of these tools has been hindered by complicated user interfaces and low awareness.

@article{liu_whats_2024,
	title = {What’s going well: a qualitative analysis of positive patient and family feedback in the context of the diagnostic process},
	volume = {11},
	copyright = {All rights reserved},
	issn = {2194-802X},
	shorttitle = {What’s going well},
	url = {https://www.degruyterbrill.com/document/doi/10.1515/dx-2023-0075/html},
	doi = {10.1515/dx-2023-0075},
	abstract = {Objectives: Accurate and timely diagnosis relies on close collaboration between patients/families and clinicians. Just as patients have unique insights into diagnostic breakdowns, positive patient feedback may also generate broader perspectives on what constitutes a “good” diagnostic process (DxP).},
	language = {en},
	number = {1},
	urldate = {2026-08-07},
	journal = {Diagnosis},
	author = {Liu, Stephen K. and Bourgeois, Fabienne and Dong, Joe and Harcourt, Kendall and Lowe, Elizabeth and Salmi, Liz and Thomas, Eric J. and Riblet, Natalie and Bell, Sigall K.},
	month = feb,
	year = {2024},
	pages = {63--72},
	url_paper={https://api.zotero.org/users/14490939/publications/items/3352F78R/file/view}
}

Objectives: Accurate and timely diagnosis relies on close collaboration between patients/families and clinicians. Just as patients have unique insights into diagnostic breakdowns, positive patient feedback may also generate broader perspectives on what constitutes a “good” diagnostic process (DxP).

@article{salmi_identifying_2024,
	title = {Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: {A} participatory co-design approach},
	volume = {11},
	copyright = {https://academic.oup.com/pages/standard-publication-reuse-rights},
	issn = {2054-2577, 2054-2585},
	shorttitle = {Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors},
	url = {https://academic.oup.com/nop/article/11/5/556/7696029},
	doi = {10.1093/nop/npae052},
	abstract = {Background. Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods.
Methods. Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed “essential elements” of brain cancer PC services.
Results. We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients’ unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services.
Conclusions. The brain tumor community calls for research testing PC service models for patients that incorporate the “essential elements” of palliative care.},
	language = {en},
	number = {5},
	urldate = {2026-08-04},
	journal = {Neuro-Oncology Practice},
	author = {Salmi, Liz and Otis-Green, Shirley and Hayden, Adam and Taylor, Lynne P and Reblin, Maija and Kwan, Bethany M},
	month = sep,
	year = {2024},
	pages = {556--565},
	url_paper={https://api.zotero.org/users/14490939/publications/items/JADHAENI/file/view}
}

Background. Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods. Methods. Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed “essential elements” of brain cancer PC services. Results. We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients’ unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services. Conclusions. The brain tumor community calls for research testing PC service models for patients that incorporate the “essential elements” of palliative care.

@article{salmi_patient_2024,
	title = {Patient {Portals} {Fail} to {Collect} {Structured} {Information} {About} {Who} {Else} is {Involved} in a {Person}’s {Care}},
	volume = {26},
	copyright = {All rights reserved},
	issn = {1438-8871},
	url = {https://www.jmir.org/2024/1/e49394},
	doi = {10.2196/49394},
	abstract = {The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient’s identity credentials—a “do-it-yourself” solution in conflict with a health systems’ legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved—patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.},
	language = {en},
	urldate = {2026-08-04},
	journal = {Journal of Medical Internet Research},
	author = {Salmi, Liz and Peereboom, Danielle and Dorr, David A and Graham, Leilani R and Wolff, Jennifer L and DesRoches, Catherine M},
	month = jun,
	year = {2024},
	pages = {e49394},
	url_paper={https://api.zotero.org/users/14490939/publications/items/4V2JX9DG/file/view}
}

The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient’s identity credentials—a “do-it-yourself” solution in conflict with a health systems’ legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved—patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.

@article{venkataraman_overcoming_2024,
	title = {Overcoming {Systemic} {Barriers} to {Make} {Patient}-{Partnered} {Research} a {Reality}},
	volume = {42},
	copyright = {All rights reserved},
	issn = {0732-183X, 1527-7755},
	url = {https://ascopubs.org/doi/10.1200/JCO.24.00347},
	doi = {10.1200/JCO.24.00347},
	language = {en},
	number = {34},
	urldate = {2026-08-04},
	journal = {Journal of Clinical Oncology},
	author = {Venkataraman, Vinayak and Martin-Giacalone, Bailey A. and Drake, Bettina F. and Salmi, Liz and Claus, Elizabeth B. and Schuster, Anne L.R. and Bridges, John F.P. and Lenz, Heinz-Josef and Willman, Cheryl L. and Diehl, Diane and Janeway, Katherine A. and Mack, Jennifer W. and George, Suzanne},
	month = dec,
	year = {2024},
	pages = {4018--4022},
	url_paper={https://api.zotero.org/users/14490939/publications/items/MYRSBMBL/file/view}
}

@article{salmi_when_2024,
	title = {When {Bad} {News} {Comes} {Through} the {Portal}: {Strengthening} {Trust} and {Guiding} {Patients} {When} {They} {Receive} {Bad} {Results} {Before} {Their} {Clinicians}},
	volume = {44},
	copyright = {All rights reserved},
	issn = {1548-8748, 1548-8756},
	shorttitle = {When {Bad} {News} {Comes} {Through} the {Portal}},
	url = {https://ascopubs.org/doi/10.1200/EDBK_433944},
	doi = {10.1200/EDBK_433944},
	abstract = {Communication in oncology was challenging long before the emergence of the US 21st Century Cures Act. Before 2021, a growing body of evidence had demonstrated the benefits of patients' access to and review of the clinical notes in their charts (open notes); however, studies examining the benefits of immediate access to test results were scarce until the implementation of the Cures Act's Information Blocking Rule. Individuals grappling with cancer today now possess immediate access to their laboratory results, imaging scans, diagnostic tests, and progress notes as mandated by law. To many clinicians, the implementation of the Cures Act felt sudden and presented new challenges and concerns for oncologists surrounding patients' potential emotional reactions to medical notes or lack of control over the careful delivery of potentially life-changing information. Despite data that show most patients want immediate access to information in their records before it is communicated directly by a health care professional, surveys of oncologists showed trepidation. In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record.
          , 
            Is immediate access to cancer-related test results a harmful form of “truth dumping?” A cancer patient, oncologist, and cancer psychiatrist share their views about when bad news comes through the patient portal. \#healthIT \#patientaccess},
	language = {en},
	number = {3},
	urldate = {2026-08-04},
	journal = {American Society of Clinical Oncology Educational Book},
	author = {Salmi, Liz and Hubbard, Joleen and McFarland, Daniel C.},
	month = jun,
	year = {2024},
	pages = {e433944},
	url_paper={https://api.zotero.org/users/14490939/publications/items/D84KQEKE/file/view}
}

Communication in oncology was challenging long before the emergence of the US 21st Century Cures Act. Before 2021, a growing body of evidence had demonstrated the benefits of patients' access to and review of the clinical notes in their charts (open notes); however, studies examining the benefits of immediate access to test results were scarce until the implementation of the Cures Act's Information Blocking Rule. Individuals grappling with cancer today now possess immediate access to their laboratory results, imaging scans, diagnostic tests, and progress notes as mandated by law. To many clinicians, the implementation of the Cures Act felt sudden and presented new challenges and concerns for oncologists surrounding patients' potential emotional reactions to medical notes or lack of control over the careful delivery of potentially life-changing information. Despite data that show most patients want immediate access to information in their records before it is communicated directly by a health care professional, surveys of oncologists showed trepidation. In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record. , Is immediate access to cancer-related test results a harmful form of “truth dumping?” A cancer patient, oncologist, and cancer psychiatrist share their views about when bad news comes through the patient portal. #healthIT #patientaccess

@article{sweeney_case_2023,
	title = {Case {Studies} for {Overcoming} {Challenges} in {Using} {Big} {Data} in {Cancer}},
	volume = {83},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {0008-5472, 1538-7445},
	url = {https://aacrjournals.org/cancerres/article/83/8/1183/725100/Case-Studies-for-Overcoming-Challenges-in-Using},
	doi = {10.1158/0008-5472.CAN-22-1277},
	abstract = {Abstract
            The analysis of big healthcare data has enormous potential as a tool for advancing oncology drug development and patient treatment, particularly in the context of precision medicine. However, there are challenges in organizing, sharing, integrating, and making these data readily accessible to the research community. This review presents five case studies illustrating various successful approaches to addressing such challenges. These efforts are CancerLinQ, the American Association for Cancer Research Project GENIE, Project Data Sphere, the National Cancer Institute Genomic Data Commons, and the Veterans Health Administration Clinical Data Initiative. Critical factors in the development of these systems include attention to the use of robust pipelines for data aggregation, common data models, data deidentification to enable multiple uses, integration of data collection into physician workflows, terminology standardization and attention to interoperability, extensive quality assurance and quality control activity, incorporation of multiple data types, and understanding how data resources can be best applied. By describing some of the emerging resources, we hope to inspire consideration of the secondary use of such data at the earliest possible step to ensure the proper sharing of data in order to generate insights that advance the understanding and the treatment of cancer.},
	language = {en},
	number = {8},
	urldate = {2026-08-06},
	journal = {Cancer Research},
	author = {Sweeney, Shawn M. and Hamadeh, Hisham K. and Abrams, Natalie and Adam, Stacey J. and Brenner, Sara and Connors, Dana E. and Davis, Gerard J. and Fiore, Louis D. and Gawel, Susan H. and Grossman, Robert L. and Hanlon, Sean E. and Hsu, Karl and Kelloff, Gary J. and Kirsch, Ilan R. and Louv, Bill and McGraw, Deven and Meng, Frank and Milgram, Daniel and Miller, Robert S. and Morgan, Emily and Mukundan, Lata and O'Brien, Thomas and Robbins, Paul and Rubin, Eric H. and Rubinstein, Wendy S. and Salmi, Liz and Schaller, Teilo H. and Shi, George and Sigman, Caroline C. and Srivastava, Sudhir},
	month = apr,
	year = {2023},
	pages = {1183--1190},
	url_paper={https://api.zotero.org/users/14490939/publications/items/NDIELHDY/file/view}
}

Abstract The analysis of big healthcare data has enormous potential as a tool for advancing oncology drug development and patient treatment, particularly in the context of precision medicine. However, there are challenges in organizing, sharing, integrating, and making these data readily accessible to the research community. This review presents five case studies illustrating various successful approaches to addressing such challenges. These efforts are CancerLinQ, the American Association for Cancer Research Project GENIE, Project Data Sphere, the National Cancer Institute Genomic Data Commons, and the Veterans Health Administration Clinical Data Initiative. Critical factors in the development of these systems include attention to the use of robust pipelines for data aggregation, common data models, data deidentification to enable multiple uses, integration of data collection into physician workflows, terminology standardization and attention to interoperability, extensive quality assurance and quality control activity, incorporation of multiple data types, and understanding how data resources can be best applied. By describing some of the emerging resources, we hope to inspire consideration of the secondary use of such data at the earliest possible step to ensure the proper sharing of data in order to generate insights that advance the understanding and the treatment of cancer.

@article{sweeney_challenges_2023,
	title = {Challenges to {Using} {Big} {Data} in {Cancer}},
	volume = {83},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {0008-5472, 1538-7445},
	url = {https://aacrjournals.org/cancerres/article/83/8/1175/725098/Challenges-to-Using-Big-Data-in-CancerChallenges},
	doi = {10.1158/0008-5472.CAN-22-1274},
	abstract = {Abstract
            Big data in healthcare can enable unprecedented understanding of diseases and their treatment, particularly in oncology. These data may include electronic health records, medical imaging, genomic sequencing, payor records, and data from pharmaceutical research, wearables, and medical devices. The ability to combine datasets and use data across many analyses is critical to the successful use of big data and is a concern for those who generate and use the data. Interoperability and data quality continue to be major challenges when working with different healthcare datasets. Mapping terminology across datasets, missing and incorrect data, and varying data structures make combining data an onerous and largely manual undertaking. Data privacy is another concern addressed by the Health Insurance Portability and Accountability Act, the Common Rule, and the General Data Protection Regulation. The use of big data is now included in the planning and activities of the FDA and the European Medicines Agency. The willingness of organizations to share data in a precompetitive fashion, agreements on data quality standards, and institution of universal and practical tenets on data privacy will be crucial to fully realizing the potential for big data in medicine.},
	language = {en},
	number = {8},
	urldate = {2026-08-06},
	journal = {Cancer Research},
	author = {Sweeney, Shawn M. and Hamadeh, Hisham K. and Abrams, Natalie and Adam, Stacey J. and Brenner, Sara and Connors, Dana E. and Davis, Gerard J. and Fiore, Louis and Gawel, Susan H. and Grossman, Robert L. and Hanlon, Sean E. and Hsu, Karl and Kelloff, Gary J. and Kirsch, Ilan R. and Louv, Bill and McGraw, Deven and Meng, Frank and Milgram, Daniel and Miller, Robert S. and Morgan, Emily and Mukundan, Lata and O'Brien, Thomas and Robbins, Paul and Rubin, Eric H. and Rubinstein, Wendy S. and Salmi, Liz and Schaller, Teilo and Shi, George and Sigman, Caroline C. and Srivastava, Sudhir},
	month = apr,
	year = {2023},
	pages = {1175--1182},
	url_paper={https://api.zotero.org/users/14490939/publications/items/YYAUF6RM/file/view}
}

Abstract Big data in healthcare can enable unprecedented understanding of diseases and their treatment, particularly in oncology. These data may include electronic health records, medical imaging, genomic sequencing, payor records, and data from pharmaceutical research, wearables, and medical devices. The ability to combine datasets and use data across many analyses is critical to the successful use of big data and is a concern for those who generate and use the data. Interoperability and data quality continue to be major challenges when working with different healthcare datasets. Mapping terminology across datasets, missing and incorrect data, and varying data structures make combining data an onerous and largely manual undertaking. Data privacy is another concern addressed by the Health Insurance Portability and Accountability Act, the Common Rule, and the General Data Protection Regulation. The use of big data is now included in the planning and activities of the FDA and the European Medicines Agency. The willingness of organizations to share data in a precompetitive fashion, agreements on data quality standards, and institution of universal and practical tenets on data privacy will be crucial to fully realizing the potential for big data in medicine.

@article{dukhanin_co-designing_2023,
	title = {Co-{Designing} an {Initiative} to {Increase} {Shared} {Access} to {Older} {Adults}’ {Patient} {Portals}: {Stakeholder} {Engagement}},
	volume = {25},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {1438-8871},
	shorttitle = {Co-{Designing} an {Initiative} to {Increase} {Shared} {Access} to {Older} {Adults}’ {Patient} {Portals}},
	url = {https://www.jmir.org/2023/1/e46146},
	doi = {10.2196/46146},
	abstract = {Background: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends—“care partners”—to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited.},
	language = {en},
	urldate = {2026-08-06},
	journal = {Journal of Medical Internet Research},
	author = {Dukhanin, Vadim and Wolff, Jennifer L and Salmi, Liz and Harcourt, Kendall and Wachenheim, Deborah and Byock, Ira and Gonzales, Matthew J and Niehus, Doug and Parshley, Marianne and Reay, Caroline and Epstein, Sara and Mohile, Supriya and Farrell, Timothy W and Supiano, Mark A and Jajodia, Anushka and DesRoches, Catherine M and {The Shared Access Project Team}},
	month = nov,
	year = {2023},
	pages = {e46146},
	url_paper={https://api.zotero.org/users/14490939/publications/items/8MV6YVWM/file/view}
}

Background: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends—“care partners”—to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited.

@article{steitz_perspectives_2023,
	title = {Perspectives of {Patients} {About} {Immediate} {Access} to {Test} {Results} {Through} an {Online} {Patient} {Portal}},
	volume = {6},
	copyright = {All rights reserved},
	issn = {2574-3805},
	url = {https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2802672},
	doi = {10.1001/jamanetworkopen.2023.3572},
	abstract = {OBJECTIVE To assess patient and caregiver attitudes and preferences related to receiving immediately released test results through an online patient portal. DESIGN, SETTING, AND PARTICIPANTS This large, multisite survey study was conducted at 4 geographically distributed academic medical centers in the US using an instrument adapted from validated surveys. The survey was delivered in May 2022 to adult patients and care partners who had accessed test results via an online patient portal account between April 5, 2021, and April 4, 2022. EXPOSURES Access to test results via a patient portal between April 5, 2021, and April 4, 2022. MAIN OUTCOMES AND MEASURES Responses to questions related to demographics, test type and result, reaction to result, notification experience and future preferences, and effect on health and well-being were aggregated. To evaluate characteristics associated with patient worry, logistic regression and pooled random-effects models were used to assess level of worry as a function of whether test results were perceived by patients as normal or not normal and whether patients were precounseled.
RESULTS Of 43 380 surveys delivered, there were 8139 respondents (18.8\%). Most respondents were female (5129 [63.0\%]) and spoke English as their primary language (7690 [94.5\%]). The median age was 64 years (IQR, 50-72 years). Most respondents (7520 of 7859 [95.7\%]), including 2337 of 2453 individuals (95.3\%) who received nonnormal results, preferred to immediately receive test results through the portal. Few respondents (411 of 5473 [7.5\%]) reported that reviewing results before they were contacted by a health care practitioner increased worry, though increased worry was more common among respondents who received abnormal results (403 of 2442 [16.5\%]) than those whose results were normal (294 of 5918 [5.0\%]). The result of the pooled model for worry as a function of test result normality was statistically significant (odds ratio [OR], 2.71; 99\% CI, 1.96-3.74), suggesting an association between worry and nonnormal results. The result of the pooled model evaluating the association between worry and precounseling was not significant (OR, 0.70; 99\% CI, 0.31-1.59).
CONCLUSIONS AND RELEVANCE In this multisite survey study of patient attitudes and preferences toward receiving immediately released test results via a patient portal, most respondents preferred},
	language = {en},
	number = {3},
	urldate = {2026-08-04},
	journal = {JAMA Network Open},
	author = {Steitz, Bryan D. and Turer, Robert W. and Lin, Chen-Tan and MacDonald, Scott and Salmi, Liz and Wright, Adam and Lehmann, Christoph U. and Langford, Karen and McDonald, Samuel A. and Reese, Thomas J. and Sternberg, Paul and Chen, Qingxia and Rosenbloom, S. Trent and DesRoches, Catherine M.},
	month = mar,
	year = {2023},
	pages = {e233572},
	url_paper={https://api.zotero.org/users/14490939/publications/items/KZQ9YFCL/file/view}
}

OBJECTIVE To assess patient and caregiver attitudes and preferences related to receiving immediately released test results through an online patient portal. DESIGN, SETTING, AND PARTICIPANTS This large, multisite survey study was conducted at 4 geographically distributed academic medical centers in the US using an instrument adapted from validated surveys. The survey was delivered in May 2022 to adult patients and care partners who had accessed test results via an online patient portal account between April 5, 2021, and April 4, 2022. EXPOSURES Access to test results via a patient portal between April 5, 2021, and April 4, 2022. MAIN OUTCOMES AND MEASURES Responses to questions related to demographics, test type and result, reaction to result, notification experience and future preferences, and effect on health and well-being were aggregated. To evaluate characteristics associated with patient worry, logistic regression and pooled random-effects models were used to assess level of worry as a function of whether test results were perceived by patients as normal or not normal and whether patients were precounseled. RESULTS Of 43 380 surveys delivered, there were 8139 respondents (18.8%). Most respondents were female (5129 [63.0%]) and spoke English as their primary language (7690 [94.5%]). The median age was 64 years (IQR, 50-72 years). Most respondents (7520 of 7859 [95.7%]), including 2337 of 2453 individuals (95.3%) who received nonnormal results, preferred to immediately receive test results through the portal. Few respondents (411 of 5473 [7.5%]) reported that reviewing results before they were contacted by a health care practitioner increased worry, though increased worry was more common among respondents who received abnormal results (403 of 2442 [16.5%]) than those whose results were normal (294 of 5918 [5.0%]). The result of the pooled model for worry as a function of test result normality was statistically significant (odds ratio [OR], 2.71; 99% CI, 1.96-3.74), suggesting an association between worry and nonnormal results. The result of the pooled model evaluating the association between worry and precounseling was not significant (OR, 0.70; 99% CI, 0.31-1.59). CONCLUSIONS AND RELEVANCE In this multisite survey study of patient attitudes and preferences toward receiving immediately released test results via a patient portal, most respondents preferred

@article{bell_filling_2022,
	title = {Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care},
	volume = {31},
	copyright = {All rights reserved},
	issn = {2044-5415, 2044-5423},
	shorttitle = {Filling a gap in safety metrics},
	url = {https://qualitysafety.bmj.com/lookup/doi/10.1136/bmjqs-2021-013672},
	doi = {10.1136/bmjqs-2021-013672},
	abstract = {Background
              Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician’s view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning.
            
            
              Method
              A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet’s AC1 and Cohen’s kappa statistic. We considered agreement coefficients 0.61–0.8=good agreement and 0.81–1.00=excellent agreement.
            
            
              Results
              The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4\% in one dataset and 6.9\% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95\% CI 0.89 to 0.90) to 0.96 (95\% CI 0.95 to 0.97); kappa 0.64 (95\% CI 0.62, to 0.66) to 0.85 (95\% CI 0.83 to 0.88).
            
            
              Conclusions
              The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning.},
	language = {en},
	number = {7},
	urldate = {2026-08-12},
	journal = {BMJ Quality \& Safety},
	author = {Bell, Sigall K and Bourgeois, Fabienne and DesRoches, Catherine M and Dong, Joe and Harcourt, Kendall and Liu, Stephen K and Lowe, Elizabeth and McGaffigan, Patricia and Ngo, Long H and Novack, Sandy A and Ralston, James D and Salmi, Liz and Schrandt, Suz and Sheridan, Sue and Sokol-Hessner, Lauge and Thomas, Glenda and Thomas, Eric J},
	month = jul,
	year = {2022},
	pages = {526--540},
	url_paper={https://api.zotero.org/users/14490939/publications/items/2A6ZXBZC/file/view}
}

Background Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician’s view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning. Method A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet’s AC1 and Cohen’s kappa statistic. We considered agreement coefficients 0.61–0.8=good agreement and 0.81–1.00=excellent agreement. Results The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4% in one dataset and 6.9% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95% CI 0.89 to 0.90) to 0.96 (95% CI 0.95 to 0.97); kappa 0.64 (95% CI 0.62, to 0.66) to 0.85 (95% CI 0.83 to 0.88). Conclusions The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning.

@article{blease_patients_2022,
	title = {Patients, clinicians and open notes: information blocking as a case of epistemic injustice},
	volume = {48},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {0306-6800, 1473-4257},
	shorttitle = {Patients, clinicians and open notes},
	url = {https://jme.bmj.com/lookup/doi/10.1136/medethics-2021-107275},
	doi = {10.1136/medethics-2021-107275},
	abstract = {In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.},
	language = {en},
	number = {10},
	urldate = {2026-08-06},
	journal = {Journal of Medical Ethics},
	author = {Blease, Charlotte and Salmi, Liz and Rexhepi, Hanife and Hägglund, Maria and DesRoches, Catherine M},
	month = oct,
	year = {2022},
	pages = {785--793},
	url_paper={https://api.zotero.org/users/14490939/publications/items/FD55ESV4/file/view}
}

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

@article{lewis_individuals_2022,
	title = {From {Individuals} to {Systems} and {Contributions} to {Creations}: {Novel} {Framework} for {Mapping} the {Efforts} of {Individuals} by {Convening} {The} {Center} of {Health} and {Health} {Care}},
	volume = {14},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {2152-7202},
	shorttitle = {From {Individuals} to {Systems} and {Contributions} to {Creations}},
	url = {https://jopm.jmir.org/2022/1/e39339},
	doi = {10.2196/39339},
	abstract = {Background: People with lived health care experiences (often referred to as “patients”) are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care.
Objective: Convening The Center aimed to bring together “people known as patients”—the center of health care—to address priorities as they defined them.
Methods: According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation.
Results: The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients’ involvement, ranging from individual to community to systemic involvement.
Conclusions: The descriptors of patients in academic literature typically focus on what health care providers think patients “are” rather than on what patients “do.” The primary result of this project is a framework for mapping what patients “do” and “where” they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation.},
	language = {en},
	number = {1},
	urldate = {2026-08-06},
	journal = {Journal of Participatory Medicine},
	author = {Lewis, Dana and Salmi, Liz and Staley, Alicia and Harlow, John},
	month = nov,
	year = {2022},
	pages = {e39339},
	url_paper={https://api.zotero.org/users/14490939/publications/items/4XP8LW2I/file/view}
}

Background: People with lived health care experiences (often referred to as “patients”) are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care. Objective: Convening The Center aimed to bring together “people known as patients”—the center of health care—to address priorities as they defined them. Methods: According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation. Results: The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients’ involvement, ranging from individual to community to systemic involvement. Conclusions: The descriptors of patients in academic literature typically focus on what health care providers think patients “are” rather than on what patients “do.” The primary result of this project is a framework for mapping what patients “do” and “where” they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation.

@article{salmi_deciding_2022,
	title = {Deciding on {My} {Dimples}},
	volume = {387},
	copyright = {All rights reserved},
	issn = {0028-4793, 1533-4406},
	url = {http://www.nejm.org/doi/10.1056/NEJMp2210418},
	doi = {10.1056/NEJMp2210418},
	language = {en},
	number = {23},
	urldate = {2026-08-04},
	journal = {New England Journal of Medicine},
	author = {Salmi, Liz},
	month = dec,
	year = {2022},
	pages = {2110--2111},
	url_paper={https://api.zotero.org/users/14490939/publications/items/XL2CTK6C/file/view}
}

@article{blease_adapting_2022,
	title = {Adapting to transparent medical records: international experience with “open notes”},
	volume = {379},
	copyright = {All rights reserved},
	issn = {1756-1833},
	shorttitle = {Adapting to transparent medical records},
	url = {https://www.bmj.com/lookup/doi/10.1136/bmj-2021-069861},
	doi = {10.1136/bmj-2021-069861},
	language = {en},
	urldate = {2026-08-04},
	journal = {BMJ},
	author = {Blease, Charlotte and McMillan, Brian and Salmi, Liz and Davidge, Gail and Delbanco, Tom},
	month = nov,
	year = {2022},
	pages = {e069861},
	url_paper={https://api.zotero.org/users/14490939/publications/items/9QWIAHAY/file/view}
}

@article{hamidi_guidelines_2022,
	title = {Guidelines for optimal utilization of social media for brain tumor stakeholders},
	volume = {136},
	copyright = {All rights reserved},
	issn = {0022-3085, 1933-0693},
	url = {https://thejns.org/view/journals/j-neurosurg/136/2/article-p335.xml},
	doi = {10.3171/2020.11.JNS203226},
	abstract = {OBJECTIVE Effective use of social media (SM) by medical professionals is vital for better connections with patients and dissemination of evidence-based information. A study of SM utilization by different stakeholders in the brain tumor community may help determine guidelines for optimal use.
METHODS Facebook, Twitter, and YouTube were searched by using the term “Brain Tumor.” Platform-specific metrics were determined, including audience size, as a measure of popularity, and mean annual increase in audience size, as a measure of performance on SM. Accounts were categorized on the basis of apparent ownership and content, with as many as two qualitative themes assigned to each account. Correlations of content themes and posting behavior with popularity and performance metrics were assessed by using the Pearson’s test.
RESULTS Facebook (67 pages and 304,581 likes) was predominantly used by organizations (64\% of pages). Top themes on Facebook, Twitter, and YouTube were charity and fundraising (67\% of pages), education and research (72\% of accounts), and experience sharing and support seeking (48\% of videos, 60\% of views, and 82\% of user engagement), respectively. On Facebook, only the presence of other concurrent platforms influenced a page’s performance (rho = 0.59) and popularity (rho = 0.61) (p {\textless} 0.05). On Twitter, the number of monthly tweets (rho = 0.66) and media utilization (rho = 0.78) were significantly correlated with increased popularity and performance (both p {\textless} 0.05). Personal YouTube videos (30\% of videos and 61\% of views) with the theme of experience sharing and support seeking had the highest level of engagement (60\% of views, 70\% of comments, and 87\% of likes).
CONCLUSIONS Popularity and prevalence of qualitative themes differ among SM platforms. Thus, optimal audience engagement on each platform can be achieved with thematic considerations. Such considerations, along with optimal SM behavior such as media utilization and multiplatform presence, may help increase content popularity and thus increase community access to neurooncology content provided by medical professionals. https://thejns.org/doi/abs/10.3171/2020.11.JNS203226},
	language = {en},
	number = {2},
	urldate = {2026-08-04},
	journal = {Journal of Neurosurgery},
	author = {Hamidi, Nima and Karmur, Brij and Sperrazza, Stephanie and Alexieva, Julia and Salmi, Liz and Zacharia, Brad E. and Nduom, Edjah K. and Cohen-Gadol, Aaron A. and Rutka, James T. and Mansouri, Alireza},
	month = feb,
	year = {2022},
	pages = {335--342},
	url_paper={https://api.zotero.org/users/14490939/publications/items/CNSWDHYC/file/view}
}

OBJECTIVE Effective use of social media (SM) by medical professionals is vital for better connections with patients and dissemination of evidence-based information. A study of SM utilization by different stakeholders in the brain tumor community may help determine guidelines for optimal use. METHODS Facebook, Twitter, and YouTube were searched by using the term “Brain Tumor.” Platform-specific metrics were determined, including audience size, as a measure of popularity, and mean annual increase in audience size, as a measure of performance on SM. Accounts were categorized on the basis of apparent ownership and content, with as many as two qualitative themes assigned to each account. Correlations of content themes and posting behavior with popularity and performance metrics were assessed by using the Pearson’s test. RESULTS Facebook (67 pages and 304,581 likes) was predominantly used by organizations (64% of pages). Top themes on Facebook, Twitter, and YouTube were charity and fundraising (67% of pages), education and research (72% of accounts), and experience sharing and support seeking (48% of videos, 60% of views, and 82% of user engagement), respectively. On Facebook, only the presence of other concurrent platforms influenced a page’s performance (rho = 0.59) and popularity (rho = 0.61) (p \textless 0.05). On Twitter, the number of monthly tweets (rho = 0.66) and media utilization (rho = 0.78) were significantly correlated with increased popularity and performance (both p \textless 0.05). Personal YouTube videos (30% of videos and 61% of views) with the theme of experience sharing and support seeking had the highest level of engagement (60% of views, 70% of comments, and 87% of likes). CONCLUSIONS Popularity and prevalence of qualitative themes differ among SM platforms. Thus, optimal audience engagement on each platform can be achieved with thematic considerations. Such considerations, along with optimal SM behavior such as media utilization and multiplatform presence, may help increase content popularity and thus increase community access to neurooncology content provided by medical professionals. https://thejns.org/doi/abs/10.3171/2020.11.JNS203226

@article{blease_preparing_2021,
	title = {Preparing {Patients} and {Clinicians} for {Open} {Notes} in {Mental} {Health}: {Qualitative} {Inquiry} of {International} {Experts}},
	volume = {8},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {2368-7959},
	shorttitle = {Preparing {Patients} and {Clinicians} for {Open} {Notes} in {Mental} {Health}},
	url = {https://mental.jmir.org/2021/4/e27397},
	doi = {10.2196/27397},
	abstract = {Background: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients.
Objective: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care.
Methods: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts’ written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations.
Results: A total of 70 of 92 (76\%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes.
Conclusions: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.},
	language = {en},
	number = {4},
	urldate = {2026-08-07},
	journal = {JMIR Mental Health},
	author = {Blease, Charlotte and Torous, John and Kharko, Anna and DesRoches, Catherine M and Harcourt, Kendall and O'Neill, Stephen and Salmi, Liz and Wachenheim, Deborah and Hägglund, Maria},
	month = apr,
	year = {2021},
	pages = {e27397},
	url_paper={https://api.zotero.org/users/14490939/publications/items/ARY9GKX2/file/view}
}

Background: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients. Objective: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care. Methods: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts’ written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations. Results: A total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes. Conclusions: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.

@article{blease_covid-19_2021,
	title = {{COVID}-19 and {Open} {Notes}: {A} {New} {Method} to {Enhance} {Patient} {Safety} and {Trust}},
	volume = {8},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {2368-7959},
	shorttitle = {{COVID}-19 and {Open} {Notes}},
	url = {https://mental.jmir.org/2021/6/e29314},
	doi = {10.2196/29314},
	abstract = {From April 5, 2021, as part of the 21st Century Cures Act, all providers in the United States must offer patients access to the medical information housed in their electronic records. Via secure health portals, patients can log in to access lab and test results, lists of prescribed medications, referral appointments, and the narrative reports written by clinicians (so-called open notes). As US providers implement this practice innovation, we describe six promising ways in which patients' access to their notes might help address problems that either emerged with or were exacerbated by the COVID-19 pandemic.},
	language = {en},
	number = {6},
	urldate = {2026-08-07},
	journal = {JMIR Mental Health},
	author = {Blease, Charlotte and Salmi, Liz and Hägglund, Maria and Wachenheim, Deborah and DesRoches, Catherine},
	month = jun,
	year = {2021},
	pages = {e29314},
	url_paper={https://api.zotero.org/users/14490939/publications/items/AQBFIYYR/file/view}
}

From April 5, 2021, as part of the 21st Century Cures Act, all providers in the United States must offer patients access to the medical information housed in their electronic records. Via secure health portals, patients can log in to access lab and test results, lists of prescribed medications, referral appointments, and the narrative reports written by clinicians (so-called open notes). As US providers implement this practice innovation, we describe six promising ways in which patients' access to their notes might help address problems that either emerged with or were exacerbated by the COVID-19 pandemic.

@article{blease_benefits_2021,
	title = {The benefits and harms of open notes in mental health: {A} {Delphi} survey of international experts},
	volume = {16},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {1932-6203},
	shorttitle = {The benefits and harms of open notes in mental health},
	url = {https://dx.plos.org/10.1371/journal.pone.0258056},
	doi = {10.1371/journal.pone.0258056},
	abstract = {Importance As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records.},
	language = {en},
	number = {10},
	urldate = {2026-08-06},
	journal = {PLOS ONE},
	author = {Blease, Charlotte and Kharko, Anna and Hägglund, Maria and O’Neill, Stephen and Wachenheim, Deborah and Salmi, Liz and Harcourt, Kendall and Locher, Cosima and DesRoches, Catherine M. and Torous, John},
	editor = {Volpe, Umberto},
	month = oct,
	year = {2021},
	pages = {e0258056},
	url_paper={https://api.zotero.org/users/14490939/publications/items/B3JNHACQ/file/view}
}

Importance As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records.

@article{salmi_new_2021,
	title = {New federal rule requires open notes: what do clinicians and patients need to know? {Insights} and suggestions from a neuro-oncologist, a neurosurgeon, and a person living with a brain tumor},
	volume = {8},
	copyright = {https://academic.oup.com/journals/pages/open\_access/funder\_policies/chorus/standard\_publication\_model},
	issn = {2054-2577, 2054-2585},
	shorttitle = {New federal rule requires open notes},
	url = {https://academic.oup.com/nop/article/8/3/233/6211023},
	doi = {10.1093/nop/npab014},
	language = {en},
	number = {3},
	urldate = {2026-08-04},
	journal = {Neuro-Oncology Practice},
	author = {Salmi, Liz and Mansouri, S Alireza and Taylor, Lynne P},
	month = may,
	year = {2021},
	pages = {233--235},
	url_paper={https://api.zotero.org/users/14490939/publications/items/XULEYEEP/file/view}
}

@article{rahimian_open_2021,
	title = {Open notes sounds great, but will a provider’s documentation change? {An} exploratory study of the effect of open notes on oncology documentation},
	volume = {4},
	copyright = {http://creativecommons.org/licenses/by/4.0/},
	issn = {2574-2531},
	shorttitle = {Open notes sounds great, but will a provider’s documentation change?},
	url = {https://academic.oup.com/jamiaopen/article/doi/10.1093/jamiaopen/ooab051/6353224},
	doi = {10.1093/jamiaopen/ooab051},
	abstract = {Objective: The effects of shared clinical notes on patients, care partners, and clinicians (“open notes”) were first studied as a demonstration project in 2010. Since then, multiple studies have shown clinicians agree shared progress notes are beneficial to patients, and patients and care partners report benefits from reading notes. To determine if implementing open notes at a hematology/oncology practice changed providers’ documentation style, we assessed the length and readability of clinicians’ notes before and after open notes implementation at an academic medical center in Boston, MA, USA. Materials and Methods: We analyzed 143 888 notes from 60 hematology/oncology clinicians before and after the open notes debut at Beth Israel Deaconess Medical Center, from January 1, 2012 to September 1, 2016. We measured the providers’ (medical doctor/nurse practitioner) documentation styles by analyzing character length, the number of addenda, note entry mode (dictated vs typed), and note readability. Measurements used 5 different readability formulas and were assessed on notes written before and after the introduction of open notes on November 25, 2013.
Results: After the introduction of open notes, the mean length of progress notes increased from 6174 characters to 6648 characters (P {\textless} .001), and the mean character length of the “assessment and plan” (A\&P) increased from 1435 characters to 1597 characters (P {\textless} .001). The Average Grade Level Readability of progress notes decreased from 11.50 to 11.33, and overall readability improved by 0.17 (P ¼ .01). There were no statistically significant changes in the length or readability of “Initial Notes” or Letters, inter-doctor communication, nor in the modality of the recording of any kind of note.
Conclusions: After the implementation of open notes, progress notes and A\&P sections became both longer and easier to read. This suggests clinician documenters may be responding to the perceived pressures of a transparent medical records environment.},
	language = {en},
	number = {3},
	urldate = {2026-08-04},
	journal = {JAMIA Open},
	author = {Rahimian, Maryam and Warner, Jeremy L and Salmi, Liz and Rosenbloom, S Trent and Davis, Roger B and Joyce, Robin M},
	month = jul,
	year = {2021},
	pages = {ooab051},
	url_paper={https://api.zotero.org/users/14490939/publications/items/24FSLU59/file/view}
}

Objective: The effects of shared clinical notes on patients, care partners, and clinicians (“open notes”) were first studied as a demonstration project in 2010. Since then, multiple studies have shown clinicians agree shared progress notes are beneficial to patients, and patients and care partners report benefits from reading notes. To determine if implementing open notes at a hematology/oncology practice changed providers’ documentation style, we assessed the length and readability of clinicians’ notes before and after open notes implementation at an academic medical center in Boston, MA, USA. Materials and Methods: We analyzed 143 888 notes from 60 hematology/oncology clinicians before and after the open notes debut at Beth Israel Deaconess Medical Center, from January 1, 2012 to September 1, 2016. We measured the providers’ (medical doctor/nurse practitioner) documentation styles by analyzing character length, the number of addenda, note entry mode (dictated vs typed), and note readability. Measurements used 5 different readability formulas and were assessed on notes written before and after the introduction of open notes on November 25, 2013. Results: After the introduction of open notes, the mean length of progress notes increased from 6174 characters to 6648 characters (P \textless .001), and the mean character length of the “assessment and plan” (A&P) increased from 1435 characters to 1597 characters (P \textless .001). The Average Grade Level Readability of progress notes decreased from 11.50 to 11.33, and overall readability improved by 0.17 (P ¼ .01). There were no statistically significant changes in the length or readability of “Initial Notes” or Letters, inter-doctor communication, nor in the modality of the recording of any kind of note. Conclusions: After the implementation of open notes, progress notes and A&P sections became both longer and easier to read. This suggests clinician documenters may be responding to the perceived pressures of a transparent medical records environment.

@article{desroches_how_2021,
	title = {How do older patients with chronic conditions view reading open visit notes?},
	volume = {69},
	copyright = {All rights reserved},
	issn = {0002-8614, 1532-5415},
	url = {https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.17406},
	doi = {10.1111/jgs.17406},
	abstract = {Background: We examine the experiences with and perceptions of the effect of reading clinical outpatient visit notes on patients with multiple chronic conditions at three healthcare organizations with significant experience sharing clinical notes with patients.
Methods: A cross-sectional survey was conducted via patient portals at three diverse healthcare organizations in the United States: Beth Israel Deaconess Medical Center (Boston, MA), UW Medical Center (Seattle, WA), and Geisinger Health System (Danville, PA). Participants were aged 65 and older patient portal users who read at least one clinical note over the 12 months before the survey. We examined the effect of note reading on patient engagement and managing medications.
Results: The majority of respondents had read two or more clinical notes in the 12 months before the survey. Patients with more than two chronic conditions were more likely than those with fewer or none to report that reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their medications. Very few patients reported feeling worried or confused about their health or medications due to reading their notes.
Conclusions: Older patients with chronic conditions are particularly vulnerable to misremembering and mismanaging their care and medication plans. Findings from this study suggest that these patients and their care partners could receive important benefits from accessing their notes. Healthcare organizations should work to maximize patient's engagement with their health information both through the patient portal and through other methods to ensure that patients and the healthcare systems reap the full benefit of the increased transparency of medical records.},
	language = {en},
	number = {12},
	urldate = {2026-08-04},
	journal = {Journal of the American Geriatrics Society},
	author = {DesRoches, Catherine M. and Salmi, Liz and Dong, Zhiyong and Blease, Charlotte},
	month = dec,
	year = {2021},
	pages = {3497--3506},
	url_paper={https://api.zotero.org/users/14490939/publications/items/R68HS69M/file/view}
}

Background: We examine the experiences with and perceptions of the effect of reading clinical outpatient visit notes on patients with multiple chronic conditions at three healthcare organizations with significant experience sharing clinical notes with patients. Methods: A cross-sectional survey was conducted via patient portals at three diverse healthcare organizations in the United States: Beth Israel Deaconess Medical Center (Boston, MA), UW Medical Center (Seattle, WA), and Geisinger Health System (Danville, PA). Participants were aged 65 and older patient portal users who read at least one clinical note over the 12 months before the survey. We examined the effect of note reading on patient engagement and managing medications. Results: The majority of respondents had read two or more clinical notes in the 12 months before the survey. Patients with more than two chronic conditions were more likely than those with fewer or none to report that reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their medications. Very few patients reported feeling worried or confused about their health or medications due to reading their notes. Conclusions: Older patients with chronic conditions are particularly vulnerable to misremembering and mismanaging their care and medication plans. Findings from this study suggest that these patients and their care partners could receive important benefits from accessing their notes. Healthcare organizations should work to maximize patient's engagement with their health information both through the patient portal and through other methods to ensure that patients and the healthcare systems reap the full benefit of the increased transparency of medical records.

@article{salmi_step-by-step_2021,
	title = {A step-by-step guide to peer review: a template for patients and novice reviewers},
	volume = {28},
	copyright = {All rights reserved},
	issn = {2632-1009},
	shorttitle = {A step-by-step guide to peer review},
	url = {https://informatics.bmj.com/lookup/doi/10.1136/bmjhci-2021-100392},
	doi = {10.1136/bmjhci-2021-100392},
	language = {en},
	number = {1},
	urldate = {2026-08-04},
	journal = {BMJ Health \& Care Informatics},
	author = {Salmi, Liz and Blease, Charlotte},
	month = aug,
	year = {2021},
	pages = {e100392},
	url_paper={https://api.zotero.org/users/14490939/publications/items/TQHWABSP/file/view}
}

@article{salmi_us_2021,
	title = {{US} policy requires immediate release of records to patients},
	copyright = {All rights reserved},
	issn = {1756-1833},
	url = {https://www.bmj.com/lookup/doi/10.1136/bmj.n426},
	doi = {10.1136/bmj.n426},
	language = {en},
	urldate = {2026-08-04},
	journal = {BMJ},
	author = {Salmi, Liz and Blease, Charlotte and Hägglund, Maria and Walker, Jan and DesRoches, Catherine M},
	month = feb,
	year = {2021},
	pages = {n426},
	url_paper={https://api.zotero.org/users/14490939/publications/items/Q3P8LTZA/file/view}
}

@article{turer_patient_2021,
	title = {Patient {Perceptions} of {Receiving} {COVID}-19 {Test} {Results} via an {Online} {Patient} {Portal}: {An} {Open} {Results} {Survey}},
	volume = {12},
	copyright = {All rights reserved},
	issn = {1869-0327},
	shorttitle = {Patient {Perceptions} of {Receiving} {COVID}-19 {Test} {Results} via an {Online} {Patient} {Portal}},
	url = {http://www.thieme-connect.de/DOI/DOI?10.1055/s-0041-1736221},
	doi = {10.1055/s-0041-1736221},
	abstract = {Objectives This study evaluates patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician.
Methods We surveyed adults who underwent COVID-19 testing between March 1, 2020 and October 21, 2020 who agreed to be directly contacted about COVID-19related research about their perspectives on receiving test results via a patient portal. We evaluated user roles (i.e., patient vs. care partner), demographic information, ease of use, impact of immediate release, notification of results, impact of viewing results on health management, and importance of sharing results with others.
Results Users were mostly patients themselves. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of nonHispanic white, highly educated, English-speaking patients.
Conclusion Overall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal. The demographics of our cohort highlight the need for further research in patient portal equity in the age of open results.},
	language = {en},
	number = {04},
	urldate = {2026-08-04},
	journal = {Applied Clinical Informatics},
	author = {Turer, Robert W. and DesRoches, Catherine M. and Salmi, Liz and Helmer, Tara and Rosenbloom, S Trent},
	month = aug,
	year = {2021},
	pages = {954--959},
	url_paper={https://api.zotero.org/users/14490939/publications/items/FVMJNQF8/file/view}
}

Objectives This study evaluates patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician. Methods We surveyed adults who underwent COVID-19 testing between March 1, 2020 and October 21, 2020 who agreed to be directly contacted about COVID-19related research about their perspectives on receiving test results via a patient portal. We evaluated user roles (i.e., patient vs. care partner), demographic information, ease of use, impact of immediate release, notification of results, impact of viewing results on health management, and importance of sharing results with others. Results Users were mostly patients themselves. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of nonHispanic white, highly educated, English-speaking patients. Conclusion Overall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal. The demographics of our cohort highlight the need for further research in patient portal equity in the age of open results.

@article{petersen_citizen_2020,
	title = {Citizen science to further precision medicine: from vision to implementation},
	volume = {3},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {2574-2531},
	shorttitle = {Citizen science to further precision medicine},
	url = {https://academic.oup.com/jamiaopen/article/3/1/2/5651081},
	doi = {10.1093/jamiaopen/ooz060},
	abstract = {The active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.},
	language = {en},
	number = {1},
	urldate = {2026-08-07},
	journal = {JAMIA Open},
	author = {Petersen, Carolyn and Austin, Robin R and Backonja, Uba and Campos, Hugo and Chung, Arlene E and Hekler, Eric B and Hsueh, Pei-Yun S and Kim, Katherine K and Pho, Anthony and Salmi, Liz and Solomonides, Anthony and Valdez, Rupa S},
	month = apr,
	year = {2020},
	pages = {2--8},
	url_paper={https://api.zotero.org/users/14490939/publications/items/BVBJB4S2/file/view}
}

The active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.

@article{blease_open_2020,
	title = {Open notes in cancer care: coming soon to patients},
	volume = {21},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {14702045},
	shorttitle = {Open notes in cancer care},
	url = {https://linkinghub.elsevier.com/retrieve/pii/S147020452030423X},
	doi = {10.1016/S1470-2045(20)30423-X},
	language = {en},
	number = {9},
	urldate = {2026-08-07},
	journal = {The Lancet Oncology},
	author = {Blease, Charlotte and Salmi, Liz and DesRoches, Catherine M},
	month = sep,
	year = {2020},
	pages = {1136--1138},
	url_paper={https://api.zotero.org/users/14490939/publications/items/WVM56SAZ/file/view}
}

@article{feliciano_brain_2020,
	title = {Brain {Tumor} {Discussions} on {Twitter} (\#{BTSM}): {Social} {Network} {Analysis}},
	volume = {22},
	copyright = {Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License},
	issn = {1438-8871},
	shorttitle = {Brain {Tumor} {Discussions} on {Twitter} (\#{BTSM})},
	url = {http://www.jmir.org/2020/10/e22005/},
	doi = {10.2196/22005},
	abstract = {Background: The Brain Tumor Social Media (\#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor.
Objective: To understand \#BTSM’s role as a patient support system, we describe user descriptors, growth, interaction, and content sharing.
Methods: We analyzed all tweets containing \#BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving \#BTSM in 2018 to visualize key stakeholders and their connections to other users.
Results: From 2012 to 2018, 59,764 unique users participated in \#BTSM, amassing 298,904 tweets. The yearly volume of \#BTSM tweets increased by 264.57\% from 16,394 in 2012 to 43,373 in 2018 with \#BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most \#BTSM tweets (33.13\%), while advocacy groups, caregivers, doctors, and researchers generated 7.01\%, 4.63\%, 3.86\%, and 3.37\%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including \#BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users.
Conclusions: From its start in 2012, \#BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information on Twitter for patients, advocates, patient organizations as well as health care professionals and researchers.},
	language = {en},
	number = {10},
	urldate = {2026-08-07},
	journal = {Journal of Medical Internet Research},
	author = {Feliciano, Josemari T and Salmi, Liz and Blotner, Charlie and Hayden, Adam and Nduom, Edjah K and Kwan, Bethany M and Katz, Matthew S and Claus, Elizabeth B},
	month = oct,
	year = {2020},
	pages = {e22005},
	url_paper={https://api.zotero.org/users/14490939/publications/items/Q8MB6R2R/file/view}
}

Background: The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. Objective: To understand #BTSM’s role as a patient support system, we describe user descriptors, growth, interaction, and content sharing. Methods: We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. Results: From 2012 to 2018, 59,764 unique users participated in #BTSM, amassing 298,904 tweets. The yearly volume of #BTSM tweets increased by 264.57% from 16,394 in 2012 to 43,373 in 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.13%), while advocacy groups, caregivers, doctors, and researchers generated 7.01%, 4.63%, 3.86%, and 3.37%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including #BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users. Conclusions: From its start in 2012, #BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information on Twitter for patients, advocates, patient organizations as well as health care professionals and researchers.

@article{salmi_six_2020,
	title = {Six countries, six individuals: resourceful patients navigating medical records in {Australia}, {Canada}, {Chile}, {Japan}, {Sweden} and the {USA}},
	volume = {10},
	copyright = {All rights reserved},
	issn = {2044-6055, 2044-6055},
	shorttitle = {Six countries, six individuals},
	url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2020-037016},
	doi = {10.1136/bmjopen-2020-037016},
	abstract = {In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new technologies, individual patients and care partners are repurposing existing tools and designing innovative, often ‘low-tech’ ways to collect, sort and interpret their own health information. To illustrate diverse approaches that individuals may take, six individuals from six nations offer anecdotes demonstrating how they are learning to collect, assess and benefit from their personal health information.},
	language = {en},
	number = {9},
	urldate = {2026-08-04},
	journal = {BMJ Open},
	author = {Salmi, Liz and Brudnicki, Selina and Isono, Maho and Riggare, Sara and Rodriquez, Cecilia and Schaper, Louise K and Walker, Jan and Delbanco, Tom},
	month = sep,
	year = {2020},
	pages = {e037016},
	url_paper={https://api.zotero.org/users/14490939/publications/items/YF7IB9IH/file/view}
}

In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new technologies, individual patients and care partners are repurposing existing tools and designing innovative, often ‘low-tech’ ways to collect, sort and interpret their own health information. To illustrate diverse approaches that individuals may take, six individuals from six nations offer anecdotes demonstrating how they are learning to collect, assess and benefit from their personal health information.

@article{salmi_stakeholder_2020,
	title = {Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of \#{BTSM} and \#{HPM} tweet chats},
	volume = {7},
	copyright = {http://creativecommons.org/licenses/by/4.0/},
	issn = {2054-2577, 2054-2585},
	shorttitle = {Stakeholder engagement in research on quality of life and palliative care for brain tumors},
	url = {https://academic.oup.com/nop/article/7/6/676/5877480},
	doi = {10.1093/nop/npaa043},
	abstract = {Background. Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients.
Methods. The Brain Cancer Quality of Life Collaborative engaged brain tumor (\#BTSM) and palliative medicine (\#HPM) stakeholder communities via Twitter using tweet chats. The \#BTSM chat focused on defining and communicating about QoL among brain tumor patients.The \#HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes.
Results. Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs.
Conclusions. In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement usingTwitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.},
	language = {en},
	number = {6},
	urldate = {2026-08-04},
	journal = {Neuro-Oncology Practice},
	author = {Salmi, Liz and Lum, Hillary D and Hayden, Adam and Reblin, Maija and Otis-Green, Shirley and Venechuk, Grace and Morris, Megan A and Griff, Megan and Kwan, Bethany M},
	month = dec,
	year = {2020},
	pages = {676--684},
	url_paper={https://api.zotero.org/users/14490939/publications/items/EI2KHFMQ/file/view}
}

Background. Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods. The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients.The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results. Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. Conclusions. In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement usingTwitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

@article{cutshall_it_2020,
	title = {“{It} {Makes} {People} {Uneasy}, but {It}'s {Necessary}. \#{BTSM}”: {Using} {Twitter} to {Explore} {Advance} {Care} {Planning} among {Brain} {Tumor} {Stakeholders}},
	volume = {23},
	copyright = {All rights reserved},
	issn = {1096-6218, 1557-7740},
	shorttitle = {“{It} {Makes} {People} {Uneasy}, but {It}'s {Necessary}. \#{BTSM}”},
	url = {https://journals.sagepub.com/doi/10.1089/jpm.2019.0077},
	doi = {10.1089/jpm.2019.0077},
	abstract = {Background: Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders.
Methods: We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patientrun Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag ‘‘\#BTSM’’ in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes.
Results: A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one’s voice is heard; and (3) Goldilock’s approach to timing—fearing ACP is too early or too late.
Conclusions: Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other’s perspectives related to ACP.},
	language = {en},
	number = {1},
	urldate = {2026-08-04},
	journal = {Journal of Palliative Medicine},
	author = {Cutshall, Nathan R. and Kwan, Bethany M. and Salmi, Liz and Lum, Hillary D.},
	month = jan,
	year = {2020},
	pages = {121--124},
	url_paper={https://api.zotero.org/users/14490939/publications/items/SV563J3T/file/view}
}

Background: Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders. Methods: We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patientrun Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag ‘‘#BTSM’’ in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes. Results: A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one’s voice is heard; and (3) Goldilock’s approach to timing—fearing ACP is too early or too late. Conclusions: Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other’s perspectives related to ACP.

@article{salmi_open_2020,
	title = {Open {Notes} in {Oncology}: {Patient} versus {Oncology} {Clinician} {Views}},
	volume = {38},
	copyright = {All rights reserved},
	issn = {15356108},
	shorttitle = {Open {Notes} in {Oncology}},
	url = {https://linkinghub.elsevier.com/retrieve/pii/S1535610820304906},
	doi = {10.1016/j.ccell.2020.09.016},
	language = {en},
	number = {6},
	urldate = {2026-08-04},
	journal = {Cancer Cell},
	author = {Salmi, Liz and Dong, Zhiyong J. and Yuh, Bertram and Walker, Jan and DesRoches, Catherine M.},
	month = dec,
	year = {2020},
	pages = {767--768},
	url_paper={https://api.zotero.org/users/14490939/publications/items/K4SJK24U/file/view}
}

@article{katz_organizing_2019,
	title = {Organizing {Online} {Health} {Content}: {Developing} {Hashtag} {Collections} for {Healthier} {Internet}-{Based} {People} and {Communities}},
	copyright = {All rights reserved},
	issn = {2473-4276},
	shorttitle = {Organizing {Online} {Health} {Content}},
	url = {https://ascopubs.org/doi/10.1200/CCI.18.00124},
	doi = {10.1200/CCI.18.00124},
	abstract = {Twitter use has increased among patients with cancer, advocates, and oncology professionals. Hashtags, a form of metadata, can be used to share content, organize health information, and create virtual communities of interest. Cancer-specific hashtags modeled on a breast cancer community, \#bcsm, led to the development of a structured set of hashtags called the cancer tag ontology. In this article, we review how these hashtags have worked with the aim of describing our experience from 2011 to 2017. We discuss useful guidelines for the development and maintenance of health-oriented communities on Twitter, including possible challenges to community sustainability and opportunities for future improvement and research.},
	language = {en},
	number = {3},
	urldate = {2026-08-04},
	journal = {JCO Clinical Cancer Informatics},
	author = {Katz, Matthew S. and Anderson, Patricia F. and Thompson, Michael A. and Salmi, Liz and Freeman-Daily, Janet and Utengen, Audun and Dizon, Don S. and Blotner, Charlie and Cooke, David T. and Sparacio, Dee and Staley, Alicia C. and Fisch, Michael J. and Young, Colleen and Attai, Deanna J.},
	month = dec,
	year = {2019},
	pages = {1--10},
	url_paper={https://api.zotero.org/users/14490939/publications/items/K5NEEDHW/file/view}
}

Twitter use has increased among patients with cancer, advocates, and oncology professionals. Hashtags, a form of metadata, can be used to share content, organize health information, and create virtual communities of interest. Cancer-specific hashtags modeled on a breast cancer community, #bcsm, led to the development of a structured set of hashtags called the cancer tag ontology. In this article, we review how these hashtags have worked with the aim of describing our experience from 2011 to 2017. We discuss useful guidelines for the development and maintenance of health-oriented communities on Twitter, including possible challenges to community sustainability and opportunities for future improvement and research.

@article{gilligan_patient-clinician_2018,
	title = {Patient-{Clinician} {Communication} {Is} a {Joint} {Creation}: {Working} {Together} {Toward} {Well}-{Being}},
	volume = {38},
	copyright = {All rights reserved},
	abstract = {Oncology clinicians face a monumentally difficult task: to guide patients on what may be the scariest and most unpleasant journey of their lives. They must preserve their patients’ hope while at the same time giving them accurate information. And patients with cancer face a monumentally difficult task: navigating a path while confronting an often-terrifying disease. Communication between patients with cancer, their loved ones, and the treating clinicians presents many challenges. We must become better at communicating with each other; patients need easier access to information about their medical condition and their health care; and we must establish relationships that are stronger and more respec ul, trusting, and empathic. If we are to deliver patient-centered or whole-person care, we must know who our patients are, what is important to them, and how they derive meaning in their lives. In this review, we discuss ASCO's first Patient-Clinician Communication guideline, the importance and value of patients having direct access to their medical record, and how to address spirituality and/or religion with patients with cancer.},
	language = {en},
	journal = {ASCO Book},
	publisher = {American Society of Clinical Oncology},
	author = {Gilligan, Timothy and Salmi, Liz and Enzinger, Andrea},
	month = may,
	year = {2018},
	pages = {532--539},
	url_paper={https://api.zotero.org/users/14490939/publications/items/IL9XIKEN/file/view}
}

Oncology clinicians face a monumentally difficult task: to guide patients on what may be the scariest and most unpleasant journey of their lives. They must preserve their patients’ hope while at the same time giving them accurate information. And patients with cancer face a monumentally difficult task: navigating a path while confronting an often-terrifying disease. Communication between patients with cancer, their loved ones, and the treating clinicians presents many challenges. We must become better at communicating with each other; patients need easier access to information about their medical condition and their health care; and we must establish relationships that are stronger and more respec ul, trusting, and empathic. If we are to deliver patient-centered or whole-person care, we must know who our patients are, what is important to them, and how they derive meaning in their lives. In this review, we discuss ASCO's first Patient-Clinician Communication guideline, the importance and value of patients having direct access to their medical record, and how to address spirituality and/or religion with patients with cancer.

@article{salmi_measure_2018,
	title = {Measure {Me}, {Don}’t {Judge} {Me}: {Patients} as {Objective} {Contributors} to {Performance} {Status} {Measurement}},
	copyright = {All rights reserved},
	issn = {2473-4276},
	shorttitle = {Measure {Me}, {Don}’t {Judge} {Me}},
	url = {https://ascopubs.org/doi/10.1200/CCI.18.00029},
	doi = {10.1200/CCI.18.00029},
	language = {en},
	number = {2},
	urldate = {2026-08-04},
	journal = {JCO Clinical Cancer Informatics},
	author = {Salmi, Liz and Warner, Jeremy L.},
	month = dec,
	year = {2018},
	pages = {1--4},
	url_paper={https://api.zotero.org/users/14490939/publications/items/D2NKUP7F/file/view}
}