PRESENTATIONS AND PUBLICATIONS

Publications

Ash JS, Cottrell EK, Saxton L, Newman L, Gebhardt E, Helfand M. Patient narratives representing patient voices to inform research: A pilot qualitative study. Studies in Health Technology and Informatics. 2015; 208:55-60. PMID: 25676947.

Christensen V, Parker K, Cottrell E. Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research. J Clin Transl Sci. 2021;5(1):e155. doi: 10.1017/cts.2021.822. eCollection 2021. PubMed PMID: 34527294; PubMed Central PMCID: PMC8427548.

Christensen, Vivian & Parker, Kellee & Chan, Lai & Saxton, Lauren & Cottrell, Erika. (2022). ‘Never once was I thinking the c‐word’: Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis. Journal of Clinical Nursing. 10.1111/jocn.16511.

Davis S., Pandhi N., Warren B., Crowder M., Ingersoll H., Perry E., Sussman A, Grob R. Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey. Res Involv Engagem. 2022;8(34). doi: https://doi.org/10.1186/s40900-022-00369-3

Evered, J.A., Dowrick, A., Castellanos, M., Carmago Goncalves Germani, AC., Rai, T., Navarro Dias de Souza, A., Cabral, I., Grob, R (2023). Talking about inequities: A comparative analysis of COVID-19 narratives in the UK, US, and Brazil. Social Science and Medicine Qualitative Research in Health. Online ahead of print.

Grob R., Evered J. What is emerging for qualitative research in the COVID-19 emergency? A rejoinder to ‘Collecting qualitative data during a pandemic’ by David Silverman.” Commun Med. June 2021;17(1):85-87. doi: https://doi.org/10.1558/cam.19752

Grob R; Schlesinger M; Wise M; Pandhi N. Stumbling into adulthood: Learning from depression while growing up. Qualitative Health Research. (e-published ahead of print) 1049732320914579, 2020 May Intern Med, 37(Suppl 1), 118-122.

Lafferty M, Winchell K, Cottrell E, Knight S, Nugent SM. Women of the Gulf War: Understanding their military and health experiences over 30 Years. Mil Med. 2022 Sep 30;. doi: 10.1093/milmed/usac283. [Epub ahead of print] PubMed PMID: 36179086.

Maclean, A., Hunt, K., Brown, A., Evered, J. A., Dowrick, A., Fokkens, A., Grob, R., Law, S., Locock, L., Marcinow, M., Smith, L., Urbanowicz, A., Verheij, N., & Wild, C. (2023). Negotiation of collective and individual candidacy for Long COVID healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy. SSM. Qualitative research in health, 3, 100207. https://doi.org/10.1016/j.ssmqr.2022.100207

Nugent SM, Cottrell E, Knight SJ, Helfand M. Health experiences research as a resource and mechanism for Veteran engagement in VA healthcare research and care delivery. J Gen Intern Med. 2022 Apr;37(Suppl 1):118-122. doi: 10.1007/s11606-021-07306-2. Epub 2022 Mar 29. PubMed PMID: 35349029; PubMed Central PMCID: PMC8993951.

Pandhi N., Gaines M., Deci D., Schlesinger M., Culp C., Karp Z., Legler C., Grob R. Broadening medical students’ exposure to the range of illness experiences: A pilot experimental curriculum trial. Academic Medicine, January 2020; 95(1): 72-76. doi: 10.1097/ACM.0000000000002893

Smith, K.C., Schlesinger, M., Warne, E., Wise, M. and Grob, R.m (Accepted). The familial canopy as thought space for meaning making, emotional calibration and planful action around inherited cancer risk. Social Science and Medicine – Qualitative Research in Health.

Ziebland S; Grob R; Schlesinger M. Polyphonic perspectives on health and care: Reflections from two decades of the DIPEx project. Journal of Health Services Research & Policy 2020 (e-published ahead of print) http://dx.doi.org/10.1177/1355819620948909

 

Presentations

Chan, La K., Parker, K., Christensen, V., Tarlow, L., Cottrell, E. Mental health of families during childhood cancer treatment and survivorship. Poster presentation; Pediatric Academic Society Conference; May 2020; Philadelphia, PA.

Cottrel, E. Elevating patient voices: Using the DIPEx methodology to augment patient engagement and enhance our understanding of patient experiences. Keynote address; Knight Cancer Institute Community Partnership Programs Grantee Conference; May 2019; Bend, OR.

Cottrell E. Leveraging health experiences research to enhance patient engagement in clinical & translational research. OCTRI Lunch & Learn; Fall 2018; Portland, OR.

Cottrell, E. Amplifying Patient Voices: An innovative approach for understanding and disseminating patient health experiences. Oregon Clinical and Translational Research Institute Research Forum, Oregon Health & Science University; January 2022; Portland, OR.

Cottrell, E. Amplifying Patient Voices: An innovative approach for understanding and disseminating patient health experiences. Oregon Clinical and Translational Research Institute Research Forum, Oregon Health & Science University; January 2022. Portland, OR.

Cottrell, E. Launching a database of individual patient experiences (DIPEx) chapter in the US. OHSU Department of Family Medicine Research & Scholarship; March 2015; Portland, OR.

Cottrell, E. Understanding Patient Health Experiences: An evidence-based approach. Panel presentation; Society for Medical Decision-Making Annual Meeting; October 2019; Portland, OR.

Cottrell, E., Ash, J., Saxton, L., Floyd, N., Helfand, M. The feasibility and effectiveness of creating a library of patient narratives to inform patient-centered research and practice in VA. Poster presentation;  VA HSR&D conference; July 2015; Philadelphia, PA.

Cottrell, E., Krancari, M., Dunne, MJ, Chang-Weir, R., Li, V. Elevating patient voices: Conducting and disseminating health experiences research in a community health center research network. Poster presentation; North American Primary Care Research Group Annual Meeting; 2016; , Colorado Springs, CO.

Cottrell, E., Krancari, M., Li, V., Dunne, MJ., Chang-Weir, R. Elevating patient voices: conducting and disseminating health experiences research in a community health center research network. Poster presentation; National Association of Community Health Centers - Community Health Institute; August 2017; San Diego, CA.

Cottrell, E., Krancari, M., Li, V., Dunne, MJ., Chang-Weir, R.. Elevating patient voices: Conducting and disseminating health experiences research in a community health center research network. Poster presentation; North American Primary Care Research Group. November 2017; Montreal, Canada.

Cottrell, E., Parker, K., Christensen, V., Prescott, T., Krancari, M., Tarlow, L., Foley, P., Grob, R. Pandhi, N., Ellison, D., Morris, C. Leveraging health experiences research to amplify patient and caregiver voices in clinical and translational research. Poster presentation; Clinical and Translational Science Award Program Meeting; September 27, 2019; Washington, DC.

Cottrell, E., Varnum, M., Christensen, V., Prescott, T., Krancari, M.,  Tarlow, L., Templeton, A. Leveraging health experiences research to amplify patient and caregiver voices. Poster presentation; Oregon Public Health Association Annual Conference; October 2022; Corvallis, OR.

Grob, R., Evered, J.A., Learning from patients: Disseminating and implementing health experiences research using catalyst films. Institute of Clinical and Translational Research Community-Academic Partnerships All Faculty/Staff Meeting; July 12, 2022; Madison, WI.

Grob, R., Evered, J.A., Wynn, M. Long COVID in the USA: Actionable insights for health care providers. Database of Individual Patient Experience International Meeting; May 23-25, 2022; . Weggis, Switzerland.

Grob, R. From bedside to bench: Learning from COVID-19 patient experiences.” UNM Clinical & Translational Sciences Center; April 2022; virtual.

Grob, R. From patient voice to patients’ voices: Incorporating patient experiences to enhance medical education. DIPEx International Steering Committee Group; November 13, 2016.

Grob, R. Giving patients’ experiences their due: an innovative methodology for the USA. The Hastings Center, Lunchtime Series; February 7, 2017; Garrison, NY.

Grob, R. Health experiences 360: Multiple uses of a web-based resource to bring patients’ voices on depression to health care. Wisconsin Collaborative for Healthcare Quality (WCHQ); October 16, 2018; Madison, WI.

Grob, R. Health experiences 360: Multiple uses of a web-based resource to bring patients’ voices on depression to health care. Access, Quality, and Outcomes Research Network; September 18, 2018; Madison, WI .

Grob, R. Identity and the health care experience. Invited Plenary Panelist; 2022 National Patient Advocate Foundation Consortium; November 17, 2022; virtual.

Grob, R. Learning about long COVID from patients: the power of narrative evidence. University of Cambridge Population Health Sciences Bradford Hill Seminar Series; December 7, 2022; Colorado Springs, CO - virtual.

Grob, R. Learning from narratives. Seminário Internacional Narrativas em Saúde (International Seminar on Health Narratives; Federal University of Rio de Janeiro; March 22, 2019; Rio de Janeiro, Brazil.

Grob, R. Learning from patients’ experiences for better culture, health, and care. National Academy of Medicine’s Leadership Consortium for a Value & Science-Driven Health System: Care, Culture, and Decision-Making Innovation Collaborative; December 7, 2016; Washington, DC.

Grob, R. Long COVID: Minding the gap between infectious disease and chronic condition. The Global Health Network: Epidemic Ethics 2022 Seminar; October 2022; virtual.

Grob, R. Moving from voice to voices: Capturing diverse patient perspectives on WGS. Sequencing Newborns: Ethics & Policy Meeting #3; February 27, 2017; San Francisco, CA.

Grob, R. New methods for eliciting patient narratives. What Patients Say: Improving Quality, Safety and the Patient Experience Using Patient Comments; October 11, 2018; Chicago, IL.

Grob, R. Patients’ voices in on-line curriculum: The virtues of the virtual, the relevance of the real.” 2nd International Conference: Where’s the Patient’s Voice in Health Professional Education – 10 Years On?; November 13, 2015; Vancouver, Canada.

Grob, R. Schlesinger, M. Patient narratives and the unvoiced other: The centrality of pets in the lives of people with chronic illness.” International Conference on Narratives of Health and Illness; November 12, 2016; Tenerife, Spain.

Grob, R. The singular importance of plural voices. International Conference on Narratives of Health and Illness; November 12, 2016; Tenerife, Spain.

Grob, R. The singular importance of plural voices: a roadmap. The Hastings Center, Lunchtime Series;December 5, 2016; Garrison, NY.

Grob, R. Using qualitative research to understand and inform public representation of patient experiences. Department of Family Medicine, University of Wisconsin-Madison School of Medicine and Public Health; 2015; Madison, WI.

Grob, R. What patients are saying about cancer, genetics, and genomics. National Patient Advocate Foundation Policy Forum; May 15, 2019.

Grob, R., Cottrell, E. Leveraging health experiences research to enhance veteran engagement in research. Veterans Affairs Health Services Research & Development Cyberseminar; July 13, 2016; virtual.

Grob, R., Cottrell, E., Parker, K., Christensen, V., Prescott, T., Krancari, M., Saxton, L., Foley, P., Pandhi, N., Ellison, D. Oregon Clinical & Translational Research Institute’s Optional Function: Leveraging health experiences research to amplify patient and caregiver voices in clinical and translational research. Oregon Clinical and Translational Research Institute Annual Meeting. September 27, 2019.

Grob, R., Evered JA., Wynn, M., Patrick, B., Al-Rayyan, Y. Including patient voices to better understand research engagement: A resource for community-engaged researchers. ICTR CAP All Faculty/Staff Meeting; April 19th, 2023; virtual.

Grob, R., Evered, JA., Wynn, M. From Patient voice to patients’ voices: A resource for health advocates. National Patient Advocate Foundation Meeting; September 20, 2022; virtual.

Grob, R., Gaines, M. Learning from the source: Patients as teachers. American Medical Association Webinar; March 25, 2019.

Grob, R., Lavie-Ajayi, M. Maximum variation sampling and saturation: A conversation. DIPEx International Meeting; November 20, 2019; Oxfordshire, UK.

Grob, R., Ongoing data analysis for DIPEx Projects. International Training for Database of Patient Experience (DIPEx) methodology, McGill University and St. Mary’s Hospital; October 5-8, 2015; Montreal, Canada.

Grob, R., Pandhi, N. A database of patient experience: Moving beyond anecdote. World Congress of Psycho-Oncology and Psychosocial Academy Workshops; 2015; Washington, DC.

Grob, R., Pandhi, N. A pilot curriculum developed from health experiences research: impact on third-year medical students. North American Primary Care Research Group 45th Annual Meeting;November 17-21, 2017; Montreal, Quebec.

Grob, R., Pandhi, N. Elevating the patient voice for patients, clinicians, and policy. Whole Me, Whole We Conference, University of Wisconsin Department of Family Medicine; October 23, 2015; Madison, WI.

Grob, R., Pandhi, N., Cotrell, E., Grevious, N., Helfand, M., Knight, S., Schlesinger, M., Smith, K., Warren, B. Understanding diverse health experiences to inform education, intervention planning and quality improvement. WONCA World Rural Health Conference; October 14, 2019; Albuquerque, New Mexico.

Grob, R., Pandhi, N., Cottrell, E. Introduction to the DIPEx methodology and the health experiences research network. Community Engagement Broker’s Webinar; July 21, 2020; virtual.

Grob, R., Pandhi, N., Grievous, N. Young adults’ diverse depression narratives: a new resource for improving campus mental health. JED Foundation Webinars for Campus Program Leaders; May 16, 2017.

Grob, R., Pandhi, N., Wise, M., Schlesinger, M., Holloway, M., Wietfeldt, M., Hanson, L. Launching a website of US patient experiences with a module about young adults with depression. Poster presentation;  National American Primary Care Research Group Conference; November 13, 2016; Colorado Springs, CO.

Grob, R., Schlesinger, M. Lost in translation? Bringing patient experience to the worlds of practice, policy and public awareness. New Directions in Qualitative Health Research Symposium, University Medical Center Groningen; November 5, 2018; Netherlands.

Grob, R., Schrager, S., Evered, J.A. Patients’ Experiences with long COVID: Insights and implications for primary care. Oral presentation for the Department of Family Medicine and Community Health Forum; 2022.

Grob, R., Smith, K., Cottrell, E., Helfand, M. Panel Discussion: Adapting DIPEx to the U.S. and VA. Society for Medical Decision Making and VA Health Services Research and Development Service’s Health Experiences Research Course; October 22, 2017; Pittsburgh, PA.

Grob, R., Watching science evolve from the front row: Patients’ diverse experiences with cancer risk and genomics. Wisconsin Genetics Exchange; September 25, 2020; Madison, WI.

Grob, R., Wynn, M. From patient voice to patient voices: A resource for breast cancer advocates. Breast Cancer Research Advocates Network, Carbone Cancer Center, University of Wisconsin-Madison; May 2022; virtual.

Grob, R., Wynn, M., Evered, J. Long COVID in the USA: Actionable insights for healthcare providers. DIPEx International Annual Meeting; May 2022; Weggis, Switzerland.

Grob, R., Wynn, M., Evered, J., Long Covid insights and implications for primary care. DFMCH Primary Care Conference; March 2022; virtual.

Parker K, Lindemulder S, Christensen V, Chan La K, Tarlow L, Cottrell EK. Understanding the Family experience of surviving childhood cancer. Poster presented at Children’s Oncology Group National Meeting; September 2019; Bethesda, MD.

Templeton A, Cottrell E, Prescott T, and Krancari M. The widest range of stories – engagement for inclusive patient experience research in community health center settings. North American Primary Care Research Group, Practice-Based Research Network Conference; June 2022.

Templeton A, Krancari M, Prescott T, Cottrell E. Enhancing patient engagement infrastructure to recruit maximum variation samples for health experiences research. North American Primary Care Research Group, Annual Meeting; November 2022.

Templeton, A., Krancari, M., Prescott, T., Cottrell, E. Enhancing patient engagement infrastructure to recruit maximum variation samples for health experiences research. North American Primary Care Research Group, Annual Meeting. November 2022. 

 

Other Dissemination (e.g. catalyst films)

Davis, S., Grob, R., Culp, C., Gaines, JR., Pandhi, N. Engaging research participants in disseminating health experiences research. The Center for Patient Partnerships, the University of Wisconsin – Madison Department of Family Medicine and Community Health, the UW Institute for Clinical and Translational Research, and the UW Health Innovation Program. Madison, WI; 2018. Available at: https://www.hipxchange.org/HealthExperiencesResearch.

Davis, S., Pandhi, N., Crowder, M., Grevious, N., Ingersoll, H., Warren, B., Perry, E., Sussman, A., Grob, R. Catalyst Films about health experiences guidebook. Center for Patient Partnerships, University of Wisconsin-Madison, University of New Mexico School of Medicine, Family & Community Medicine, UW-Madison Institute for Clinical & Translational Research, Health Experiences Research Network, and the UW Health Innovation Program; 2020. Available at: healthexperiencesusa.org/catalystfilms.

Evered, JA., Schuette, A., Ritzenthaler, R. Health hybrids: A multi-dimensional conversation with experts at the intersection of design and well-being. Invited Panelist. Masters in Design and Innovation Program (April 12th, 2013); Dorothy O’Brien Innovation Lab.

Experiences with Clinical Trials, Health Experiences Research Network USA Website. http://www.healthexperiencesusa.org. This website is the gateway for U.S. modules developed using the internationally vetted DIPEx methodology.

Grob, R., Wise, M., Braithwaite, L., Schlesinger, M., Tevaarwerk, A., Jacobson, N., Rozmovits, L., Wynn, M., Warne, E., McCarthy, T. Breast Cancer. HealthexperiencesUSA. https://www.healthexperiencesusa.org/Breast-Cancer/overview. Published October 2021. Accessed October 28, 2021.

Grob, R., Wise, M., Braithwaite, L., Schlesinger, M., Tevaarwerk, A., Jacobson, N., Rozmovits, L., Wynn, M., Warne, E., McCarthy, T. Cancer Risk that Runs in Families. HealthexperiencesUSA. http://www.healthexperiencesusa.org. Published 2020. Accessed June 1, 2022.