@article{wolff_agenda_2026,
	title = {An {Agenda} to {Support} {Care} {Partner} {Engagement} through the {Patient} {Portal}},
	volume = {7},
	issn = {2642-0007},
	url = {https://catalyst.nejm.org/doi/10.1056/CAT.25.0312},
	doi = {10.1056/CAT.25.0312},
	language = {en},
	number = {7},
	urldate = {2026-07-15},
	journal = {NEJM Catalyst},
	author = {Wolff, Jennifer L. and DesRoches, Catherine M.},
	month = jun,
	year = {2026},
}

@article{rosenbloom_new_2026,
	title = {A {New} {Cancer} {Diagnosis} is {Never} {Good}—{Patient} {Choice}, {Busy} {Health} {Systems}, and {Health} {Information} {Access}},
	volume = {9},
	issn = {2574-3805},
	url = {https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2850686},
	doi = {10.1001/jamanetworkopen.2026.19982},
	language = {en},
	number = {6},
	urldate = {2026-07-15},
	journal = {JAMA Network Open},
	author = {Rosenbloom, S. Trent and Steitz, Bryan and DesRoches, Catherine M.},
	month = jun,
	year = {2026},
	pages = {e2619982},
}

@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 = {Abstract
            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.
            Drawing on frameworks and principles rooted in human-centered design (HCD), we conducted an evaluation of a multisite quality improvement study designed to increase the awareness and adoption of shared access to patient portals for older adults and their care partners. Through feedback gathered from key informants, we identified barriers to the adoption of materials created for the parent quality improvement project, and synthesize additional implementation strategies from informant feedback to improve shared access.
            We employed the Double Diamond Model (DDM) of HCD to guide our research. The DDM includes engaging a diverse group of community partners—older adults, care partners, health care system leaders, communications professionals—through focus groups and individual interviews. Our process involved identifying pain points related to registration for shared access, then synthesizing these insights through inductive coding and affinity mapping to generate solutions.
            An analysis of our community partner feedback revealed several themes, including the necessity for simplified patient portal registration, standardized terminology about shared access, and clear messaging strategies. A step-by-step video tutorial was developed as a prototype. The prototype was then implemented at a partner health system and received positive feedback, suggesting its potential for broader use.
            These findings emphasize the importance of involving “end users” (patients, care partners, health care system leaders, communications professionals) in the evaluation and implementation of digital health tools. Approaching challenges with an HCD mindset helped our team identify barriers to shared access adoption and led to the development of a tangible resource (prototype and video). This project highlights the potential for HCD to drive improvements in digital health equity.
            This research demonstrates a practical application of HCD methods in developing effective solutions for enhancing shared access for older adults, and all people using patient portals.},
	language = {en},
	number = {05},
	urldate = {2026-07-15},
	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},
}

Abstract 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. Drawing on frameworks and principles rooted in human-centered design (HCD), we conducted an evaluation of a multisite quality improvement study designed to increase the awareness and adoption of shared access to patient portals for older adults and their care partners. Through feedback gathered from key informants, we identified barriers to the adoption of materials created for the parent quality improvement project, and synthesize additional implementation strategies from informant feedback to improve shared access. We employed the Double Diamond Model (DDM) of HCD to guide our research. The DDM includes engaging a diverse group of community partners—older adults, care partners, health care system leaders, communications professionals—through focus groups and individual interviews. Our process involved identifying pain points related to registration for shared access, then synthesizing these insights through inductive coding and affinity mapping to generate solutions. An analysis of our community partner feedback revealed several themes, including the necessity for simplified patient portal registration, standardized terminology about shared access, and clear messaging strategies. A step-by-step video tutorial was developed as a prototype. The prototype was then implemented at a partner health system and received positive feedback, suggesting its potential for broader use. These findings emphasize the importance of involving “end users” (patients, care partners, health care system leaders, communications professionals) in the evaluation and implementation of digital health tools. Approaching challenges with an HCD mindset helped our team identify barriers to shared access adoption and led to the development of a tangible resource (prototype and video). This project highlights the potential for HCD to drive improvements in digital health equity. This research demonstrates a practical application of HCD methods in developing effective solutions for enhancing shared access for older adults, and all people using patient portals.

@article{brown_intimate_2025,
	title = {Intimate {Partner} {Violence} and {Open} {Notes}: {Challenges} and {Opportunities}},
	volume = {3},
	copyright = {https://creativecommons.org/licenses/by-nc-sa/4.0},
	issn = {2817-3848},
	shorttitle = {Intimate {Partner} {Violence} and {Open} {Notes}},
	url = {https://mrujs.mtroyal.ca/index.php/jafn/article/view/938},
	doi = {10.29173/jafn938},
	abstract = {Purpose of Review: Intimate partner violence (IPV) is a widespread public health issue with significant physical and psychological consequences. OpenNotes, which allows patients to view their clinical notes, presents an opportunity to enhance care for survivors by fostering transparency, trust, and patient engagement. This review provides background information on OpenNotes specifically as it relates to IPV and proposes practical recommendations for forensic nurses and clinicians in healthcare settings. Methods: We conducted a literature review of peer-reviewed publications about OpenNotes or trauma-informed IPV documentation. The writing team using an iterative process synthesized and summarized how OpenNotes can be used to support trauma-informed IPV care. Subject matter experts from various disciplines (nursing, psychiatry and social services provided feedback on the summary synthesis.
Key Findings and Recommendations: best practices for leveraging OpenNotes to support IPV survivors, including strategies for sensitive documentation, shared decision-making, and interdisciplinary collaboration were identified. The benefits of OpenNotes can empower patients, reinforce trauma-informed care, and facilitate safer, more effective communication between survivors and members of their clinical team. Limitations: there are inherent limitations of a narrative review such as potential selection bias, search strategy limitations, and lack of a systematic critical appraisal of literature. Conclusions: This narrative review provides concepts for best practices in the context of documentation in electronic health records.  Further exploration using rigorous methodology is needed to understand best practices, inform policy and education.},
	number = {3},
	urldate = {2026-07-15},
	journal = {Journal of the Academy of Forensic Nursing},
	author = {Brown, Cathryn and Lovejoy, Rachel and Chin, Samantha and Frier, Kelly and McLean, Marissa and Savage-Borne, Jacqueline and Katz, Jeffrey and Lewis-O'Connor, Annie and Levy Carrick, Nomi C.},
	month = dec,
	year = {2025},
	pages = {87--103},
}

Purpose of Review: Intimate partner violence (IPV) is a widespread public health issue with significant physical and psychological consequences. OpenNotes, which allows patients to view their clinical notes, presents an opportunity to enhance care for survivors by fostering transparency, trust, and patient engagement. This review provides background information on OpenNotes specifically as it relates to IPV and proposes practical recommendations for forensic nurses and clinicians in healthcare settings. Methods: We conducted a literature review of peer-reviewed publications about OpenNotes or trauma-informed IPV documentation. The writing team using an iterative process synthesized and summarized how OpenNotes can be used to support trauma-informed IPV care. Subject matter experts from various disciplines (nursing, psychiatry and social services provided feedback on the summary synthesis. Key Findings and Recommendations: best practices for leveraging OpenNotes to support IPV survivors, including strategies for sensitive documentation, shared decision-making, and interdisciplinary collaboration were identified. The benefits of OpenNotes can empower patients, reinforce trauma-informed care, and facilitate safer, more effective communication between survivors and members of their clinical team. Limitations: there are inherent limitations of a narrative review such as potential selection bias, search strategy limitations, and lack of a systematic critical appraisal of literature. Conclusions: This narrative review provides concepts for best practices in the context of documentation in electronic health records.  Further exploration using rigorous methodology is needed to understand best practices, inform policy and education.

@article{desroches_designing_2025,
	title = {Designing for {Techquity}: {Ensuring} {Open} {Notes} {Serve} {All} {Patients}},
	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 = {2026-07-15},
	journal = {JCO Clinical Cancer Informatics},
	author = {DesRoches, Catherine M. and Salmi, Liz},
	month = dec,
	year = {2025},
	pages = {e2500290},
}

@article{salmi_proof--concept_2025,
	title = {A proof-of-concept study for patient use of open notes with large language models},
	volume = {8},
	copyright = {https://creativecommons.org/licenses/by/4.0/},
	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 = {2026-07-15},
	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},
}

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{ohare_multicenter_2025,
	title = {A multicenter randomized trial to improve family clinical note access and outcomes for hospitalized children: {The} {Bedside} {Notes} study protocol},
	volume = {20},
	issn = {1553-5592, 1553-5606},
	shorttitle = {A multicenter randomized trial to improve family clinical note access and outcomes for hospitalized children},
	url = {https://shmpublications.onlinelibrary.wiley.com/doi/10.1002/jhm.70155},
	doi = {10.1002/jhm.70155},
	abstract = {Introduction: The 2021 Cures Act mandates caregiver access to their child′s medical notes with few exceptions, yet fewer than 10\% access notes during hospitalization. Caregiver review of real‐time notes facilitates identification of safety concerns and may enhance patient safety in pediatric hospitals. This trial will evaluate the Bedside Notes intervention—a multifaceted approach to enhance real‐time access to inpatient notes—and its effects on caregiver activation, hospital experience, reporting of safety concerns found in notes, and anxiety.},
	language = {en},
	number = {11},
	urldate = {2026-07-15},
	journal = {Journal of Hospital Medicine},
	author = {O'Hare, Casey and Gatewood, Amanda K. and Baird, Jennifer and Brown, Roger and Coller, Ryan J. and Desai, Arti and Egan, Anna and Gerber, Danielle and McGuire, Troy and Singh‐Verdeflor, Kristina Devi and Smith, Catherine Arnott and Verdelis, George Angelos and Warner, Gemma and Wong, Sarah and Kelly, Michelle M.},
	month = nov,
	year = {2025},
	pages = {1256--1264},
}

Introduction: The 2021 Cures Act mandates caregiver access to their child′s medical notes with few exceptions, yet fewer than 10% access notes during hospitalization. Caregiver review of real‐time notes facilitates identification of safety concerns and may enhance patient safety in pediatric hospitals. This trial will evaluate the Bedside Notes intervention—a multifaceted approach to enhance real‐time access to inpatient notes—and its effects on caregiver activation, hospital experience, reporting of safety concerns found in notes, and anxiety.

@article{gleason_multisite_2025,
	title = {A {Multisite} {Demonstration} of {Shared} {Access} to {Older} {Adults}’ {Patient} {Portals}},
	volume = {8},
	issn = {2574-3805},
	url = {https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2830580},
	doi = {10.1001/jamanetworkopen.2024.61803},
	abstract = {OBJECTIVE To examine the outcomes of a multisite demonstration involving organizational strategies associated with registration and use of patient portal shared access. DESIGN, SETTING, AND PARTICIPANTS This quality improvement study was conducted in diverse sites within 3 health systems in the US: (1) geriatric oncology, (2) geriatric medicine, and (3) primary care. Patients aged 65 years or older with 1 or more visits during the 12-month demonstration period (July 1, 2022, through July 1, 2023, for sites 1 and 2; site 3 was delayed 3 months) and care partners who used the portal accounts of patients meeting these criteria were included. The 6-month postdemonstration period (August 1, 2023, through January 1, 2024) was compared with the 6-month predemonstration period (January 1 through June 1, 2022). EXPOSURES Organizational strategies (brochures, webpages, tip sheets, and implementation toolkits created using a human-centered design) to encourage shared access registration and use. MAIN OUTCOMES AND MEASURES Portal registration and use (logins, laboratory results viewed, clinical notes viewed, visits scheduled) by type of access (patient and care partner) from electronic health record data were examined. Patient- and care partner–reported awareness and use of shared access were measured using a postdemonstration survey.
RESULTS A total of 16 005 patients from the 3 sites met the inclusion criteria (84.8\% younger than 85 years and 61.5\% women). Most patients had an activated portal account (91.0\%) and logged in at least once (84.8\%) during the 24 months spanning the demonstration and pre- and postdemonstration periods. New portal registrations were stable, but nonsignificant for shared access (110 of 14 758 [0.7\%] vs 91 of 14 016 [0.6\%]) and significantly decreased for patient access (677 of 3158 [21.5\%] vs 225 of 1520 [13.2\%]). Use of shared access before vs after the demonstration increased for number of logins (mean [SD], 5.9 [11.4] vs 6.8 [14.1]), laboratory results viewed (mean [SD], 0.7 [2.7] vs 1.1 [3.7]), clinical notes viewed (mean [SD], 0.2 [1.1] vs 0.6 [3.2]), and visits scheduled (mean [SD], 0.8 [10.8] vs 1.0 [5.4]). Of the 91 care partners reporting portal use in the postdemonstration survey, 48 (52.7\%) indicated primarily using patient credentials and 31 (34.1\%) indicated primarily using their own credentials. Less than one-half of patients (721 of 1664 [43.3\%]) stated being aware of shared access.
CONCLUSIONS AND RELEVANCE These findings show no association of the multisite demonstration with increased new registrations for shared access and only modest increases in},
	language = {en},
	number = {2},
	urldate = {2026-07-15},
	journal = {JAMA Network Open},
	author = {Gleason, Kelly T. and DesRoches, Catherine M. and Wu, Mingche M. J. and Peereboom, Danielle and Dukhanin, Vadim and Farrell, Timothy W. and Gonzales, Matthew J. and Sharma, Saloni and Mohile, Supriya G. and Epstein, Sara and Supiano, Mark A. and Parshley, Marianne C. and Roth, David L. and Wolff, Jennifer L. and {Shared Access Project Team} and Salmi, Elizabeth and Kenyon, Martha and Wachenheim, Deborah and Fear, Kathleen},
	month = feb,
	year = {2025},
	pages = {e2461803},
}

OBJECTIVE To examine the outcomes of a multisite demonstration involving organizational strategies associated with registration and use of patient portal shared access. DESIGN, SETTING, AND PARTICIPANTS This quality improvement study was conducted in diverse sites within 3 health systems in the US: (1) geriatric oncology, (2) geriatric medicine, and (3) primary care. Patients aged 65 years or older with 1 or more visits during the 12-month demonstration period (July 1, 2022, through July 1, 2023, for sites 1 and 2; site 3 was delayed 3 months) and care partners who used the portal accounts of patients meeting these criteria were included. The 6-month postdemonstration period (August 1, 2023, through January 1, 2024) was compared with the 6-month predemonstration period (January 1 through June 1, 2022). EXPOSURES Organizational strategies (brochures, webpages, tip sheets, and implementation toolkits created using a human-centered design) to encourage shared access registration and use. MAIN OUTCOMES AND MEASURES Portal registration and use (logins, laboratory results viewed, clinical notes viewed, visits scheduled) by type of access (patient and care partner) from electronic health record data were examined. Patient- and care partner–reported awareness and use of shared access were measured using a postdemonstration survey. RESULTS A total of 16 005 patients from the 3 sites met the inclusion criteria (84.8% younger than 85 years and 61.5% women). Most patients had an activated portal account (91.0%) and logged in at least once (84.8%) during the 24 months spanning the demonstration and pre- and postdemonstration periods. New portal registrations were stable, but nonsignificant for shared access (110 of 14 758 [0.7%] vs 91 of 14 016 [0.6%]) and significantly decreased for patient access (677 of 3158 [21.5%] vs 225 of 1520 [13.2%]). Use of shared access before vs after the demonstration increased for number of logins (mean [SD], 5.9 [11.4] vs 6.8 [14.1]), laboratory results viewed (mean [SD], 0.7 [2.7] vs 1.1 [3.7]), clinical notes viewed (mean [SD], 0.2 [1.1] vs 0.6 [3.2]), and visits scheduled (mean [SD], 0.8 [10.8] vs 1.0 [5.4]). Of the 91 care partners reporting portal use in the postdemonstration survey, 48 (52.7%) indicated primarily using patient credentials and 31 (34.1%) indicated primarily using their own credentials. Less than one-half of patients (721 of 1664 [43.3%]) stated being aware of shared access. CONCLUSIONS AND RELEVANCE These findings show no association of the multisite demonstration with increased new registrations for shared access and only modest increases in

@article{eng_patient-centered_2024,
	title = {A {Patient}-{Centered} {Documentation} {Skills} {Curriculum} for {Preclerkship} {Medical} {Students} in an {Open} {Notes} {Era}},
	issn = {2374-8265},
	url = {http://www.mededportal.org/doi/10.15766/mep_2374-8265.11392},
	doi = {10.15766/mep_2374-8265.11392},
	abstract = {Introduction: New legislation allows patients (with permitted exceptions) to read their clinical notes, leading to both benefits and ethical dilemmas. Medical students need a robust curriculum to learn documentation skills within this challenging context. We aimed to teach note-writing skills through a patient-centered lens with special consideration for the impact on patients and providers. We developed this session for first-year medical students within their foundational clinical skills course to place bias-free language at the forefront of how they learn to construct a medical note. Methods: One hundred seventy-three first-year medical and dental students participated in this curriculum. They completed an asynchronous presession module first, followed by a 2-hour synchronous workshop including a didactic, student-led discussion and sample patient note exercise. Students were subsequently responsible throughout the year for constructing patient-centered notes, graded by faculty with a newly developed rubric and checklist of best practices. Results: On postworkshop surveys, learners reported increased preparedness in their ability to document in a patient-centered manner (presession M = 2.2, midyear M = 3.9, p {\textless} .001), as rated on a 5-point Likert scale (1 = not prepared at all, 5 = very prepared), and also found this topic valuable to learn early in their training. Discussion: This curriculum utilizes a multipart approach to prepare learners to employ clinical notes to communicate with patients and providers, with special attention to how patients and their care partners receive a note. Future directions include expanding the curriculum to higher levels of learning and validating the developed materials.},
	language = {en},
	urldate = {2026-07-15},
	journal = {MedEdPORTAL},
	author = {Eng, Kathleen and Johnston, Katherine and Cerda, Ivo and Kadakia, Kushal and Mosier-Mills, Alison and Vanka, Anita},
	month = mar,
	year = {2024},
	pages = {11392},
}

Introduction: New legislation allows patients (with permitted exceptions) to read their clinical notes, leading to both benefits and ethical dilemmas. Medical students need a robust curriculum to learn documentation skills within this challenging context. We aimed to teach note-writing skills through a patient-centered lens with special consideration for the impact on patients and providers. We developed this session for first-year medical students within their foundational clinical skills course to place bias-free language at the forefront of how they learn to construct a medical note. Methods: One hundred seventy-three first-year medical and dental students participated in this curriculum. They completed an asynchronous presession module first, followed by a 2-hour synchronous workshop including a didactic, student-led discussion and sample patient note exercise. Students were subsequently responsible throughout the year for constructing patient-centered notes, graded by faculty with a newly developed rubric and checklist of best practices. Results: On postworkshop surveys, learners reported increased preparedness in their ability to document in a patient-centered manner (presession M = 2.2, midyear M = 3.9, p \textless .001), as rated on a 5-point Likert scale (1 = not prepared at all, 5 = very prepared), and also found this topic valuable to learn early in their training. Discussion: This curriculum utilizes a multipart approach to prepare learners to employ clinical notes to communicate with patients and providers, with special attention to how patients and their care partners receive a note. Future directions include expanding the curriculum to higher levels of learning and validating the developed materials.

@article{pasternak_21st_2023,
	title = {21st {Century} {Cures} {Act} {ONC} {Rule}: {Implications} for {Adolescent} {Care} and {Confidentiality} {Protections}},
	volume = {151},
	issn = {0031-4005},
	shorttitle = {21st {Century} {Cures} {Act} {ONC} {Rule}},
	url = {https://doi.org/10.1542/peds.2022-057267K},
	doi = {10.1542/peds.2022-057267K},
	abstract = {Ensuring the confidentiality and protection of health information is the standard of care for adolescents. In 2023 and beyond, the protection of personal health information is more critical than ever. The 21st Century Cures Act Office of the National Coordinator for Health Information Technology Rule, with its requirements for the broad sharing of electronic health information and ban on “information blocking,” poses serious concerns for confidentiality in adolescent health care delivery. The coronavirus disease 2019 pandemic has rapidly increased the use of telehealth and, thereby, patient portal use for adolescent health records, increasing risks for disclosure. Understanding the legal and clinical underpinnings for confidential adolescent health services and the clinical challenges and health information technology limitations presented by the Office of the National Coordinator for Health Information Technology Rule is key to providing quality adolescent health services while implementing the Rule. A framework is presented to facilitate decision-making in individual cases by clinicians.},
	number = {Supplement 1},
	urldate = {2026-07-15},
	journal = {Pediatrics},
	author = {Pasternak, Ryan H. and Alderman, Elizabeth M. and English, Abigail},
	month = apr,
	year = {2023},
	pages = {e2022057267K},
}

Ensuring the confidentiality and protection of health information is the standard of care for adolescents. In 2023 and beyond, the protection of personal health information is more critical than ever. The 21st Century Cures Act Office of the National Coordinator for Health Information Technology Rule, with its requirements for the broad sharing of electronic health information and ban on “information blocking,” poses serious concerns for confidentiality in adolescent health care delivery. The coronavirus disease 2019 pandemic has rapidly increased the use of telehealth and, thereby, patient portal use for adolescent health records, increasing risks for disclosure. Understanding the legal and clinical underpinnings for confidential adolescent health services and the clinical challenges and health information technology limitations presented by the Office of the National Coordinator for Health Information Technology Rule is key to providing quality adolescent health services while implementing the Rule. A framework is presented to facilitate decision-making in individual cases by clinicians.

@article{lam_patient-centered_2023,
	title = {A {Patient}-{Centered} {Approach} to {Writing} {Ambulatory} {Visit} {Notes} in the {Cures} {Act} {Era}},
	volume = {14},
	issn = {1869-0327},
	url = {http://www.thieme-connect.de/DOI/DOI?10.1055/s-0043-1761436},
	doi = {10.1055/s-0043-1761436},
	abstract = {Today’s clinicians practice in an environment that is different than the one in which they learned. Managing the uncertainty around new transparent documentation practices can feel overwhelming, especially in time-constrained settings. But federally mandated information sharing means clinical informaticist leaders and medical educators need to take steps to prepare clinicians. Our proposed patient-centered approach to writing notes is derived from research on how patients experience note-reading and focuses on leveraging benefits while minimizing risks (►Table 1).},
	language = {en},
	number = {01},
	urldate = {2026-07-15},
	journal = {Applied Clinical Informatics},
	author = {Lam, Barbara D. and Dupee, David and Gerard, Macda and Bell, Sigall K.},
	month = jan,
	year = {2023},
	pages = {199--204},
}

Today’s clinicians practice in an environment that is different than the one in which they learned. Managing the uncertainty around new transparent documentation practices can feel overwhelming, especially in time-constrained settings. But federally mandated information sharing means clinical informaticist leaders and medical educators need to take steps to prepare clinicians. Our proposed patient-centered approach to writing notes is derived from research on how patients experience note-reading and focuses on leveraging benefits while minimizing risks (►Table 1).

@article{hussain_natural_2021,
	title = {A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management: a cystic fibrosis case study},
	volume = {4},
	copyright = {https://creativecommons.org/licenses/by-nc/4.0/},
	issn = {2574-2531},
	shorttitle = {A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management},
	url = {https://academic.oup.com/jamiaopen/article/doi/10.1093/jamiaopen/ooab084/6377936},
	doi = {10.1093/jamiaopen/ooab084},
	abstract = {Objectives: Patient-generated health data (PGHD) are important for tracking and monitoring out of clinic health events and supporting shared clinical decisions. Unstructured text as PGHD (eg, medical diary notes and transcriptions) may encapsulate rich information through narratives which can be critical to better understand a patient’s condition. We propose a natural language processing (NLP) supported data synthesis pipeline for unstructured PGHD, focusing on children with special healthcare needs (CSHCN), and demonstrate it with a case study on cystic fibrosis (CF).},
	language = {en},
	number = {3},
	urldate = {2026-07-15},
	journal = {JAMIA Open},
	author = {Hussain, Syed-Amad and Sezgin, Emre and Krivchenia, Katelyn and Luna, John and Rust, Steve and Huang, Yungui},
	month = jul,
	year = {2021},
	pages = {ooab084},
}

Objectives: Patient-generated health data (PGHD) are important for tracking and monitoring out of clinic health events and supporting shared clinical decisions. Unstructured text as PGHD (eg, medical diary notes and transcriptions) may encapsulate rich information through narratives which can be critical to better understand a patient’s condition. We propose a natural language processing (NLP) supported data synthesis pipeline for unstructured PGHD, focusing on children with special healthcare needs (CSHCN), and demonstrate it with a case study on cystic fibrosis (CF).

@article{bourgeois_patient_2019,
	title = {A patient and family reporting system for perceived ambulatory note mistakes: experience at 3 {U}.{S}. healthcare centers},
	volume = {26},
	copyright = {https://academic.oup.com/journals/pages/open\_access/funder\_policies/chorus/standard\_publication\_model},
	issn = {1527-974X},
	shorttitle = {A patient and family reporting system for perceived ambulatory note mistakes},
	url = {https://academic.oup.com/jamia/article/26/12/1566/5559299},
	doi = {10.1093/jamia/ocz142},
	abstract = {Objective: The study sought to test a patient and family online reporting system for perceived ambulatory visit note inaccuracies. Materials and Methods: We implemented a patient and family electronic reporting system at 3 U.S. healthcare centers: a northeast urban academic adult medical center (AD), a northeast urban academic pediatric medical center (PED), and a southeast nonprofit hospital network (NET). Patients and families reported potential documentation inaccuracies after reading primary care and subspecialty visit notes. Results were characterized using descriptive statistics and coded for clinical relevance.
Results: We received 1440 patient and family reports (780 AD, 402 PED, and 258 NET), and 27\% of the reports identified a potential inaccuracy (25\% AD, 35\% PED, 28\% NET). Among these, patients and families indicated that the potential inaccuracy was important or very important in 58\% of reports (55\% AD, 55\% PED, 71\% NET). The most common types of potential inaccuracies included description of symptoms (21\%), past medical problems (21\%), medications (18\%), and important information that was missing (15\%). Most patient- and family-reported inaccuracies resulted in a change to care or to the medical record (55\% AD, 67\% PED, data not available at NET). Discussion: About one-quarter of patients and families using an online reporting system identified potential documentation inaccuracies in visit notes and more than half were considered important by patients and clinicians, underscoring the potential role of patients and families as ambulatory safety partners.
Conclusions: Partnering with patients and families to obtain reports on inaccuracies in visit notes may contribute to safer care. Mechanisms to encourage greater use of patient and family reporting systems are needed.},
	language = {en},
	number = {12},
	urldate = {2026-07-15},
	journal = {Journal of the American Medical Informatics Association},
	author = {Bourgeois, Fabienne C and Fossa, Alan and Gerard, Macda and Davis, Marion E and Taylor, Yhenneko J and Connor, Crystal D and Vaden, Tracela and McWilliams, Andrew and Spencer, Melanie D and Folcarelli, Patricia and Bell, Sigall K},
	month = dec,
	year = {2019},
	pages = {1566--1573},
}

Objective: The study sought to test a patient and family online reporting system for perceived ambulatory visit note inaccuracies. Materials and Methods: We implemented a patient and family electronic reporting system at 3 U.S. healthcare centers: a northeast urban academic adult medical center (AD), a northeast urban academic pediatric medical center (PED), and a southeast nonprofit hospital network (NET). Patients and families reported potential documentation inaccuracies after reading primary care and subspecialty visit notes. Results were characterized using descriptive statistics and coded for clinical relevance. Results: We received 1440 patient and family reports (780 AD, 402 PED, and 258 NET), and 27% of the reports identified a potential inaccuracy (25% AD, 35% PED, 28% NET). Among these, patients and families indicated that the potential inaccuracy was important or very important in 58% of reports (55% AD, 55% PED, 71% NET). The most common types of potential inaccuracies included description of symptoms (21%), past medical problems (21%), medications (18%), and important information that was missing (15%). Most patient- and family-reported inaccuracies resulted in a change to care or to the medical record (55% AD, 67% PED, data not available at NET). Discussion: About one-quarter of patients and families using an online reporting system identified potential documentation inaccuracies in visit notes and more than half were considered important by patients and clinicians, underscoring the potential role of patients and families as ambulatory safety partners. Conclusions: Partnering with patients and families to obtain reports on inaccuracies in visit notes may contribute to safer care. Mechanisms to encourage greater use of patient and family reporting systems are needed.

@article{safford_new_2018,
	title = {A {New} {Chapter} in {Patient}-{Centered} {Care}: {Sharing} the {Medical} {Note}?},
	volume = {168},
	copyright = {https://www.acpjournals.org/journal/aim/text-and-data-mining},
	issn = {0003-4819, 1539-3704},
	shorttitle = {A {New} {Chapter} in {Patient}-{Centered} {Care}},
	url = {https://www.acpjournals.org/doi/10.7326/M17-2802},
	doi = {10.7326/M17-2802},
	language = {en},
	number = {4},
	urldate = {2026-07-15},
	journal = {Annals of Internal Medicine},
	author = {Safford, Monika M.},
	month = feb,
	year = {2018},
	pages = {298},
}

@article{bell_multi-stakeholder_2018,
	title = {A {Multi}-{Stakeholder} {Consensus}-{Driven} {Research} {Agenda} for {Better} {Understanding} and {Supporting} the {Emotional} {Impact} of {Harmful} {Events} on {Patients} and {Families}},
	volume = {44},
	issn = {15537250},
	url = {https://linkinghub.elsevier.com/retrieve/pii/S1553725018300540},
	doi = {10.1016/j.jcjq.2018.03.007},
	abstract = {Background: The nature and consequences of patient and family emotional harm stemming from preventable medical error, such as losing a loved one or surviving serious medical injury, is poorly understood. Patients and families, clinicians, social scientists, lawyers, and foundation/policy leaders were brought together to establish research priorities for this issue.
Methods: A one-day conference of diverse stakeholder groups to establish a consensus-driven research agenda focused on (1) priorities for research on the short-term and long-term emotional impact of harmful events on patients and families, (2) barriers and enablers to conducting such research, and (3) actionable steps toward better supporting harmed patients and families now.
Results: Stakeholders discussed patient and family experiences after serious harmful events, including profound isolation, psychological distress, damaging aspects of medical culture, health care aversion, and negative effects on communities. Stakeholder groups reached consensus, defining four research priorities: (1) Establish conceptual framework and patient-centered taxonomy of harm and healing; (2) Describe epidemiology of emotional harm; (3) Determine how to make emotional harm and long-term impacts visible to health care organizations and society at large; and (4) Develop and implement best practices for emotional support of patients and families. The group also created a strategy for overcoming research barriers and actionable “Do Now” approaches to improve the patient and family experience while research is ongoing.
Conclusion: Emotional and other long-term impacts of harmful events can have profound consequences for patients and families. Stakeholders designed a path forward to inform approaches that better support harmed patients and families, with both immediately actionable and longer-term research strategies.},
	language = {en},
	number = {7},
	urldate = {2026-07-15},
	journal = {The Joint Commission Journal on Quality and Patient Safety},
	author = {Bell, Sigall K. and Etchegaray, Jason M. and Gaufberg, Elizabeth and Lowe, Elizabeth and Ottosen, Madelene J. and Sands, Kenneth E. and Lee, Barbara Sarnoff and Thomas, Eric J. and Van Niel, Melinda and Kenney, Linda},
	month = jul,
	year = {2018},
	pages = {424--435},
}

Background: The nature and consequences of patient and family emotional harm stemming from preventable medical error, such as losing a loved one or surviving serious medical injury, is poorly understood. Patients and families, clinicians, social scientists, lawyers, and foundation/policy leaders were brought together to establish research priorities for this issue. Methods: A one-day conference of diverse stakeholder groups to establish a consensus-driven research agenda focused on (1) priorities for research on the short-term and long-term emotional impact of harmful events on patients and families, (2) barriers and enablers to conducting such research, and (3) actionable steps toward better supporting harmed patients and families now. Results: Stakeholders discussed patient and family experiences after serious harmful events, including profound isolation, psychological distress, damaging aspects of medical culture, health care aversion, and negative effects on communities. Stakeholder groups reached consensus, defining four research priorities: (1) Establish conceptual framework and patient-centered taxonomy of harm and healing; (2) Describe epidemiology of emotional harm; (3) Determine how to make emotional harm and long-term impacts visible to health care organizations and society at large; and (4) Develop and implement best practices for emotional support of patients and families. The group also created a strategy for overcoming research barriers and actionable “Do Now” approaches to improve the patient and family experience while research is ongoing. Conclusion: Emotional and other long-term impacts of harmful events can have profound consequences for patients and families. Stakeholders designed a path forward to inform approaches that better support harmed patients and families, with both immediately actionable and longer-term research strategies.

@article{bell_patient_2017,
	title = {A patient feedback reporting tool for {OpenNotes}: implications for patient-clinician safety and quality partnerships},
	volume = {26},
	issn = {2044-5415, 2044-5423},
	shorttitle = {A patient feedback reporting tool for {OpenNotes}},
	url = {https://qualitysafety.bmj.com/lookup/doi/10.1136/bmjqs-2016-006020},
	doi = {10.1136/bmjqs-2016-006020},
	abstract = {Background OpenNotes, a national movement inviting patients to read their clinicians’ notes online, may enhance safety through patientreported documentation errors.
Objective To test an OpenNotes patient reporting tool focused on safety concerns.
Methods We invited 6225 patients through a patient portal to provide note feedback in a quality improvement pilot between August 2014 and 2015. A link at the end of the note led to a 9-question survey. Patient Relations personnel vetted responses, shared safety concerns with providers and documented whether changes were made.
Results 2736/6225(44\%) of patients read notes; among these, 1 in 12 patients used the tool, submitting 260 reports. Nearly all (96\%) respondents reported understanding the note. Patients and care partners documented potential safety concerns in 23\% of reports; 2\% did not understand the care plan and 21\% reported possible mistakes, including medications, existing health problems, something important missing from the note or current symptoms. Among these, 64\% were definite or possible safety concerns on clinician review, and 57\% of cases confirmed with patients resulted in a change to the record or care. The feedback tool exceeded the reporting rate of our ambulatory online clinician adverse event reporting system severalfold. After a year, 99\% of patients and care partners found the tool valuable, 97\% wanted it to continue, 98\% reported unchanged or improved relationships with their clinician, and none of the providers in the small pilot reported worsening workflow or relationships with patients.
Conclusions Patients and care partners reported potential safety concerns in about one-quarter of reports, often resulting in a change to the record},
	language = {en},
	number = {4},
	urldate = {2026-07-15},
	journal = {BMJ Quality \& Safety},
	author = {Bell, Sigall K and Gerard, Macda and Fossa, Alan and Delbanco, Tom and Folcarelli, Patricia H and Sands, Kenneth E and Sarnoff Lee, Barbara and Walker, Jan},
	month = apr,
	year = {2017},
	pages = {312--322},
}

Background OpenNotes, a national movement inviting patients to read their clinicians’ notes online, may enhance safety through patientreported documentation errors. Objective To test an OpenNotes patient reporting tool focused on safety concerns. Methods We invited 6225 patients through a patient portal to provide note feedback in a quality improvement pilot between August 2014 and 2015. A link at the end of the note led to a 9-question survey. Patient Relations personnel vetted responses, shared safety concerns with providers and documented whether changes were made. Results 2736/6225(44%) of patients read notes; among these, 1 in 12 patients used the tool, submitting 260 reports. Nearly all (96%) respondents reported understanding the note. Patients and care partners documented potential safety concerns in 23% of reports; 2% did not understand the care plan and 21% reported possible mistakes, including medications, existing health problems, something important missing from the note or current symptoms. Among these, 64% were definite or possible safety concerns on clinician review, and 57% of cases confirmed with patients resulted in a change to the record or care. The feedback tool exceeded the reporting rate of our ambulatory online clinician adverse event reporting system severalfold. After a year, 99% of patients and care partners found the tool valuable, 97% wanted it to continue, 98% reported unchanged or improved relationships with their clinician, and none of the providers in the small pilot reported worsening workflow or relationships with patients. Conclusions Patients and care partners reported potential safety concerns in about one-quarter of reports, often resulting in a change to the record