Optimizing participant and community engagement in cancer genomic sequencing research

Optimizing participant and community engagement in cancer genomic sequencing research. Crossnohere, N. L., Schuster, A. L., Blair, C. K., Bland, H., Carpten, J. D., Claus, E. B., Colditz, G. A., Diehl, D., Ding, L., Drake, B. F., Fields, R. C., George, S., Janeway, K., Kim, H., Lenz, H., Mack, J. W., Ricker, C., Stern, M. C., Sussman, A., Trent, J., Van Allen, E., Verhaak, R., Willman, C., Bridges, J. F., Mishra, S. I., Kwan, B. M., Toriola, A. T., James, A. S., Anandarajah, A., Tomkinson, A., Church, A., Lai, A. M., Toland, A., Sussman, A., Heffernan, A. E., Noriega, A., Martin-Giacalone, B. A., Tew, B. Y., Davis, B., Kwan, B. M., Drake, B., Rosales, B., Ovalle, B., Salhia, B., Crompton, B., Chavez, C. E., Cibulskis, C., Stoll, C., Lerman, C., DesRoches, C., Raut, C., Ricker, C. N., Wiggins, C., Willman, C., Marx, C. M., Blair, C., Rubalcava, C., Hernandez, D., Craig, D., Engelthaler, D., Merrell, D., Spencer, D., Wallace, D., MacKenzie, D., McCance, D., Diehl, D., Siegal-Botti, E., Taylor, E., Van Allen, E., Claus, E. B., Velazquez-Villarreal, E., Duncavage, E. J., Linnenbringer, E. L., Ceca, E., Wan, F., Chen, F., Rodrigues, F. M., Carranza, F. G., Getz, G., Gooden, G., Cross, G., Colditz, G. A., Dart, H., Hampel, H., Lenz, H., Clark, H., Kang, H., Kim, H., Shulman, I., Ulloa, I., Lowey, J., Gauderman, J. W., Rodriguez, J., Hornick, J. L., MacKeigan, J., Henderson, J., Trent, J., Mack, J., Tsui, J., Mozersky, J., Sanchez, J., Stopfer, J., McElroy, J., Mendez, J. S., Carpten, J., Bridges, J. F., Keats, J., Vega, J., Lewinger, J. P., Garber, J., Wong, J. M., Barnard, J., Fortier, J., Culver, J. O., Kyte, K., Janeway, K. A., Lee, K., Pettes, K., Johnson, K. C., Hall, K., Lim, K. H., Vij, K., Blackwater, K., Fisher, L., Ding, L., Zhang, L., Lennox, L., Salmi, L., Garbanati, L. B., Enriquez, L. L., Postel, M., Smart, M., Quetawki, M., Stern, M. C., Fiala, M. A., Watson, M. A., Politi, M. C., DeCamp, M. W., Bachini, M., Wendl, M. C., Hochman, M., Slade, M., Kosich, M., Gutierrez, N. C., Schork, N., Hamblet, N., Pollock, N., Elia, N., Bhattacharyya, O., Chastain, P., Dickson, P. I., Henderson, P. N., Merriam, P., Jaffal, R., Mehta, R., Chavez, R., Vij, R., Jayasinghe, R. G., Gonzalez-Fisher, R., Verhaak, R., Barahona, R., Du, R., Fields, R. C., Algaze, S., Byron, S., Rajpara, S., Ovalle, S., Lee-Sin, S., Ryan, S., Mishra, S., Gabriel, S., Gray, S., Cargill, S. S., George, S., Iqbal, S., Hendrickson, T., Chowdhury, T., Boyce, T., Rebbeck, T., Whitsett, T., Glaberman, U. B., Pankratz, V. S., Yamamoto, V., Cao, Y., Amzaleg, Y., & Crees, Z. Genetics in Medicine, 27(9):101483, September, 2025.

Paper

Paper doi abstract bibtex

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{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}
}

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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 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= {Optimizing participant and community engagement in cancer genomic sequencing research},\n\tvolume = {27},\n\tcopyright = {All rights reserved},\n\tissn = {10983600},\n\turl = {https://linkinghub.elsevier.com/retrieve/pii/S1098360025001303},\n\tdoi = {10.1016/j.gim.2025.101483},\n\tabstract = {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.\nMethods: 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.\nResults: 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.\nConclusion: 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.},\n\tlanguage = {en},\n\tnumber = {9},\n\turldate = {2026-08-06},\n\tjournal = {Genetics in Medicine},\n\tauthor = {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},\n\tmonth = sep,\n\tyear = {2025},\n\tpages = {101483},\n\turl_paper={https://api.zotero.org/users/14490939/publications/items/BIW74IRR/file/view}\n}\n\n\n\n","author_short":["Crossnohere, N. L.","Schuster, A. L.","Blair, C. K.","Bland, H.","Carpten, J. D.","Claus, E. B.","Colditz, G. A.","Diehl, D.","Ding, L.","Drake, B. F.","Fields, R. C.","George, S.","Janeway, K.","Kim, H.","Lenz, H.","Mack, J. W.","Ricker, C.","Stern, M. C.","Sussman, A.","Trent, J.","Van Allen, E.","Verhaak, R.","Willman, C.","Bridges, J. F.","Mishra, S. I.","Kwan, B. M.","Toriola, A. T.","James, A. S.","Anandarajah, A.","Tomkinson, A.","Church, A.","Lai, A. M.","Toland, A.","Sussman, A.","Heffernan, A. E.","Noriega, A.","Martin-Giacalone, B. A.","Tew, B. Y.","Davis, B.","Kwan, B. M.","Drake, B.","Rosales, B.","Ovalle, B.","Salhia, B.","Crompton, B.","Chavez, C. 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S.","Yamamoto, V.","Cao, Y.","Amzaleg, Y.","Crees, Z."],"key":"crossnohere_optimizing_2025","id":"crossnohere_optimizing_2025","bibbaseid":"crossnohere-schuster-blair-bland-carpten-claus-colditz-diehl-etal-optimizingparticipantandcommunityengagementincancergenomicsequencingresearch-2025","role":"author","urls":{"Paper":"https://linkinghub.elsevier.com/retrieve/pii/S1098360025001303"," paper":"https://api.zotero.org/users/14490939/publications/items/BIW74IRR/file/view"},"metadata":{"authorlinks":{}}},"bibtype":"article","biburl":"https://bibbase.org/zotero-mypublications/lizsalmi","dataSources":["tXdjan2EsRaZnLHkJ","omejyQz8YqXE4qK37"],"keywords":[],"search_terms":["optimizing","participant","community","engagement","cancer","genomic","sequencing","research","crossnohere","schuster","blair","bland","carpten","claus","colditz","diehl","ding","drake","fields","george","janeway","kim","lenz","mack","ricker","stern","sussman","trent","van allen","verhaak","willman","bridges","mishra","kwan","toriola","james","anandarajah","tomkinson","church","lai","toland","sussman","heffernan","noriega","martin-giacalone","tew","davis","kwan","drake","rosales","ovalle","salhia","crompton","chavez","cibulskis","stoll","lerman","desroches","raut","ricker","wiggins","willman","marx","blair","rubalcava","hernandez","craig","engelthaler","merrell","spencer","wallace","mackenzie","mccance","diehl","siegal-botti","taylor","van allen","claus","velazquez-villarreal","duncavage","linnenbringer","ceca","wan","chen","rodrigues","carranza","getz","gooden","cross","colditz","dart","hampel","lenz","clark","kang","kim","shulman","ulloa","lowey","gauderman","rodriguez","hornick","mackeigan","henderson","trent","mack","tsui","mozersky","sanchez","stopfer","mcelroy","mendez","carpten","bridges","keats","vega","lewinger","garber","wong","barnard","fortier","culver","kyte","janeway","lee","pettes","johnson","hall","lim","vij","blackwater","fisher","ding","zhang","lennox","salmi","garbanati","enriquez","postel","smart","quetawki","stern","fiala","watson","politi","decamp","bachini","wendl","hochman","slade","kosich","gutierrez","schork","hamblet","pollock","elia","bhattacharyya","chastain","dickson","henderson","merriam","jaffal","mehta","chavez","vij","jayasinghe","gonzalez-fisher","verhaak","barahona","du","fields","algaze","byron","rajpara","ovalle","lee-sin","ryan","mishra","gabriel","gray","cargill","george","iqbal","hendrickson","chowdhury","boyce","rebbeck","whitsett","glaberman","pankratz","yamamoto","cao","amzaleg","crees"],"title":"Optimizing participant and community engagement in cancer genomic sequencing research","year":2025}