Co-creating the Patient Partner Guide by a Multiple Chronic Conditions Team of Patients, Clinicians, and Researchers: Observational Report

Constance van Eeghen, Juvena R Hitt, Douglas J Pomeroy, Paula Reynolds, Gail L Rose, Jennifer O'Rourke Lavoie, Constance van Eeghen, Juvena R Hitt, Douglas J Pomeroy, Paula Reynolds, Gail L Rose, Jennifer O'Rourke Lavoie

Abstract

Background: Engaging patients as partners can influence research, with rewards and deterrents. The authors are researchers and patient co-investigators who collaborated on a comparative effectiveness, randomized controlled study of a structured quality improvement (QI) process to improve behavioral health and primary care integration for people managing multiple chronic conditions (MCC). Patient co-investigators responded to a gap in available resources to support study clinics in partnering with their own patients in QI and co-created the Patient Partner Guide (PPG).

Objective: Describe the development of the PPG, its use by clinics undertaking the QI project, and research team partnerships.

Design: Observational report of study intervention component.

Participants: Diverse patients and family members managing MCC and members of their primary care clinics.

Intervention: The PPG component of the study intervention is a five-step workbook providing practical tools and resources to sustain partnerships across clinic QI team members, including patient partners. The process of developing the PPG relied on relationship-building tools that were iteratively assessed, practiced, improved, and incorporated into the PPG under the leadership of patient co-investigators.

Main measures: Observations related to PPG use and patient partner inclusion in clinic QI; impact on the research team.

Key results: Of 20 clinics, 6 engaged patients as full partners on QI teams. Clinics found resistance in partnering and challenges in using the PPG but valued the material and their partners' contributions. Similarly, engagement of patient co-investigators in research brought a shift in perspective to team members. The PPG is available and was adapted for use by research teams.

Conclusions: Engagement of patients and other stakeholders in research can be transformative and productive. Building relationships through meaningful work benefits others, and in turn, the research process. This approach can enhance clinical care QI and may result in substantial contributions to the conduct of research.

Clinical trial registration: https://ichgcp.net/clinical-trials-registry/NCT02868983.

Keywords: Behavioral health integration; Multiple chronic conditions; Patient engagement; Research team development; Stakeholder participation.

Conflict of interest statement

All authors received funding support through the study on Integrating Behavioral Health and Primary Care funded by the Patient-Centered Outcomes Research Institute. No other conflicts of interest were identified.

© 2021. The Author(s).

Figures

Figure 1
Figure 1
Overview of the patient partner guide.
Figure 2
Figure 2
Use of the patient partner guide by clinic QI teams.

References

    1. Sheridan S, Schrandt S, Forsythe L, Hilliard TS, Paez KA. The PCORI Engagement Rubric: Promising Practices for Partnering in Research. Ann Fam Med. 2017;15(2):165–170. doi: 10.1370/afm.2042.
    1. Vat LE, Finlay T, Jan Schuitmaker-Warnaar T, Fahy N, Robinson P, Boudes M, et al. Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review. Health expectations: an international journal of public participation in health care and health policy. 2020;23(1):5–18. doi: 10.1111/hex.12951.
    1. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Services Research. 2014;14(1):89. doi: 10.1186/1472-6963-14-89.
    1. Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–66. doi: 10.1111/hex.12090.
    1. Hovén E, Eriksson L, Månsson D'Souza Å, Sörensen J, Hill D, Viklund C, et al. What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration. Research involvement and engagement. 2020;6:33–33. doi: 10.1186/s40900-020-00207-4.
    1. Ellis LE, Kass NE. How are PCORI-funded researchers engaging patients in research and what are the ethical implications? AJOB Empirical Bioethics. 2017;8(1):1–10. doi: 10.1080/23294515.2016.1206045.
    1. Poger JM, Mayer V, Duru OK, Nauman B, Holderness H, Warren N, et al. Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research. Med Care. 2020;58:S66–s74. doi: 10.1097/MLR.0000000000001264.
    1. Forsythe L, Heckert A, Margolis MK, Schrandt S, Frank L. Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute. Quality of Life Research. 2018;27(1):17–31. doi: 10.1007/s11136-017-1581-x.
    1. Beneciuk JM, Verstandig D, Taylor C, Scott D, Levin J, Osborne R, et al. Musculoskeletal pain stakeholder engagement and partnership development: determining patient-centered research priorities. Research Involvement and Engagement. 2020;6(1):28. doi: 10.1186/s40900-020-00192-8.
    1. Hemphill R, Forsythe LP, Heckert AL, Amolegbe A, Maurer M, Carman KL, et al. What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings. Health Expect. 2020;23(2):328–336. doi: 10.1111/hex.12979.
    1. Crocker AM, Kessler R, van Eeghen C, Bonnell LN, Breshears RE, Callas P, et al. Integrating Behavioral Health and Primary Care (IBH-PC) to improve patient-centered outcomes in adults with multiple chronic medical and behavioral health conditions: study protocol for a pragmatic cluster-randomized control trial. Trials. 2021;22(1):200. doi: 10.1186/s13063-021-05133-8.
    1. Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, et al. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expectations. 2019;22(4):785–801. doi: 10.1111/hex.12888.
    1. Hibbard JH. Engaging health care consumers to improve the quality of care. Med Care. 2003;41(1 Suppl):I61–70.
    1. Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood) 2013;32(2):223–31. doi: 10.1377/hlthaff.2012.1133.
    1. Han E, Scholle S, Morton S, et al. Survey Shows that Fewer than a Third of Patient-Centered Medical Home Practices Engage Patients in Quality Improvement. Health affairs (Millwood, Va.) 2013;32(2):1–9.
    1. Patel N, Rajasingam D. User engagement in the delivery and design of maternity services. Best Pract Res Clin Obstet Gynaecol. 2013;27(4):597–608. doi: 10.1016/j.bpobgyn.2013.04.006.
    1. Dickinson WP, Nease DE, Rhyne RL, Knierim KE, Fernald DH, de la Cerda DR, et al. Practice Transformation Support and Patient Engagement to Improve Cardiovascular Care: From EvidenceNOW Southwest (ENSW) The Journal of the American Board of Family Medicine. 2020;33(5):675–686. doi: 10.3122/jabfm.2020.05.190395.
    1. Roseman D, Osborne-Stafsnes J, Amy CH, Boslaugh S, Slate-Miller K. Early lessons from four 'aligning forces for quality' communities bolster the case for patient-centered care. Health Aff (Millwood) 2013;32(2):232–41. doi: 10.1377/hlthaff.2012.1085.
    1. Mende S, Roseman D. The Aligning Forces For Quality Experience: Lessons On Getting Consumers Involved In Health Care Improvements. Health Affairs. 2013;32(6):1092–1100. doi: 10.1377/hlthaff.2012.1079.
    1. Kemper C, Blackburn C, Doyle JA, Hyman D. Engaging patients and families in system-level improvement: a safety imperative. Nurs Adm Q. 2013;37(3):203–15. doi: 10.1097/NAQ.0b013e318295f61e.
    1. Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. Bmj. 2014;348:g1687. doi: 10.1136/bmj.g1687.
    1. Kielmann T, Huby G, Powell A, Sheikh A, Price D, Williams S, et al. From awareness to involvement? A qualitative study of respiratory patients’ awareness of health service change. Health Expectations. 2011;14(3):321–333. doi: 10.1111/j.1369-7625.2010.00631.x.
    1. Maurer, M., Dardess, P., Carman K.L., et al., Guide to Patient and Family Engagement: Environmental Scan Report, in AHRQ Publication No. 12-0042-EF, A.I.f. Research, Editor. 2012, Agency for Healthcare Research and Quality: Rockville, MD.
    1. Simmons LB, Baker NJ, Schaefer J, Miller D, Anders S. Activation of Patients for Successful Self-Management. Journal of Ambulatory Care Management. 2009;32(1):16–23. doi: 10.1097/01.JAC.0000343120.07844.a9.
    1. Blueprint for the CMS Measures Management System, Version 17.0. 2021 [cited 2021 Dec 16]; Available from: .
    1. Sheridan NF, Kenealy TW, Kidd JD, Schmidt-Busby JIG, Hand JE, Raphael DL, et al. Patients’ engagement in primary care: powerlessness and compounding jeopardy. A qualitative study. Health Expectations. 2012;18(1):32–43. doi: 10.1111/hex.12006.
    1. PCORI Engagement Rubric. 2014 [cited 2021 Dec 16]; Available from: .
    1. Harboe, G. and E.M. Huang. Real-World Affinity Diagramming Practices: Bridging the Paper-Digital Gap. Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems 2015; pp. 95–104. Available from: 10.1145/2702123.2702561.
    1. Pomey, M.P., D.P. Ghadiri, P. Karazivan, N. Fernandez, and N. Clavel, Patients as partners: a qualitative study of patients' engagement in their health care. PLoS One, 2015. 10(4): p. e0122499.
    1. Karazivan P, Dumez V, Flora L, Pomey MP, Del Grande C, Ghadiri DP, et al. The patient-as-partner approach in health care: a conceptual framework for a necessary transition. Acad Med. 2015;90(4):437–41. doi: 10.1097/ACM.0000000000000603.
    1. Peikes, D., Genevro, J, Scholle, SH, Torda, P, The Patient-Centered Medical Home: Strategies to Put Patients at the Center of Primary Care, AHRQ, Editor. 2011: Rockville, MD.
    1. Scholle SH, Torda P, Peikes D, Han E, Genevro J, Engaging Patients and Families in the Medical Home, A.f.H.R.a. Quality, Editor. 2010: Rockville, MD.
    1. Johnson BH. Promoting Patient- and Family-Centered Care Through Personal Stories. Acad Med. 2016;91(3):297–300. doi: 10.1097/ACM.0000000000001086.
    1. Wiig S, Storm M, Aase K, Gjestsen MT, Solheim M, Harthug S, et al. Investigating the use of patient involvement and patient experience in quality improvement in Norway: rhetoric or reality? BMC Health Serv Res. 2013;13:206. doi: 10.1186/1472-6963-13-206.
    1. Sharma AE, Willard-Grace R, Willis A, Zieve O, Dubé K, Parker C, et al. "How Can We Talk about Patient-centered Care without Patients at the Table?" Lessons Learned from Patient Advisory Councils. J Am Board Fam Med. 2016;29(6):775–784. doi: 10.3122/jabfm.2016.06.150380.
    1. Black A, Strain K, Wallsworth C, Charlton S-G, Chang W, McNamee K, et al. What constitutes meaningful engagement for patients and families as partners on research teams? Journal of Health Services Research & Policy. 2018;23(3):158–167. doi: 10.1177/1355819618762960.
    1. Stephens KA, KP Osterhage, Fiore-Gartland B, Lovins TL, Keppel GA, Kim KK. Examining the Needs of Patient Stakeholders as Research Partners in Health Data Networks for Translational Research. in AMIA Jt Summits Transl Sci Proc. 2019: 363–369.
    1. Young K, Kaminstein D, Olivos A, Burroughs C, Castillo-Lee C, Kullman J, et al. Patient involvement in medical research: what patients and physicians learn from each other. Orphanet journal of rare diseases. 2019;14(1):21–21. doi: 10.1186/s13023-018-0969-1.
    1. Katzenbach, J., Smith, DK, The wisdom of teams: Creating the high-performance organization. 1993, Boston, MA: Harvard Business School Press.
    1. Patterson K. Crucial Conversations: Tools for talking when stakes are high. New York: McGraw-Hill; 2012.
    1. Esmail LC, Barasky R, Mittman BS, Hickam DH. Improving Comparative Effectiveness Research of Complex Health Interventions: Standards from the Patient-Centered Outcomes Research Institute (PCORI) J Gen Intern Med. 2020;35(Suppl 2):875–881. doi: 10.1007/s11606-020-06093-6.

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