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Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research

  • James D. Harrison
  • Wendy G. Anderson
  • Maureen Fagan
  • Edmondo Robinson
  • Jeffrey Schnipper
  • Gina Symczak
  • Catherine Hanson
  • Martha B. Carnie
  • Jim Banta
  • Sherry Chen
  • Jonathan Duong
  • Celene Wong
  • Andrew D. Auerbach
Original Research Article

Abstract

Objective

The aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context.

Methods

We formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate. All participants were asked a standard set of questions exploring the study question. We used content analysis to analyze data.

Results

Eighty PFAC members and other stakeholders (45 patient/caregiver members of PFACs, 12 PFAC leaders, 12 hospital leaders, 11 researchers) participated in eight focus and 19 individual interviews. We identified ten barriers to PFAC member engagement in research. Codes were organized into three categories: (1) individual PFAC member reluctance; (2) lack of skills and training; and (3) problems connecting with the right person at the right time. We identified ten strategies to support engagement. These were organized into four categories: (1) creating an environment where the PFAC members are making a genuine and unique contribution; (2) building community between PFAC members and researchers; (3) best practice activities for researchers to facilitate engagement; and (4) tools and training.

Conclusion

Barriers to engaging PFAC members in research include patients’ negative perceptions of research and researchers’ lack of training. Building community between PFAC members and researchers is a foundation for partnerships. There are shared training opportunities for PFAC members and researchers to build skills about research and research engagement.

Notes

Acknowledgements

We would like to thank all stakeholders who participated in interviews and focus groups. Special thanks to all the patient partners for their time and for sharing their perspectives. Additional thanks for Tweedie Gaines, Ann-Marie Baker, Karen Anderson, Jason Selinger, Joanna Laffrey, and Teri Rose for assistance in organizing the focus groups. The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

Author contributions

JDH, WGA, MF, ER, JS, GS, CH, MBC, JB, and ADA contributed to the concept, study design, study implementation, data collection, data analysis/interpretation and manuscript preparation. CW contributed to study implementation, data collection, data analysis/interpretation and manuscript preparation. SC and JD were involved in the data analysis/interpretation and manuscript preparation.

Funding

This study was funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (Harrison #3455).

Compliance with Ethical Standards

Ethical approval

This study was reviewed and approved by the University of California San Francisco (UCSF), Brigham & Women’s Hospital (BWH), and Christiana Care Health System (CCHS) Committees on Human Research.

Conflict of interest

All authors support patient stakeholder engagement in research and patient-centered care. JDH, WGA, MF, ER, JS, GS, CH, MBC, JB, CW, SC, JD and ADA have no other conflicts of interest to declare.

Supplementary material

40271_2018_298_MOESM1_ESM.docx (139 kb)
Supplementary material 1 (DOCX 138 kb)
40271_2018_298_MOESM2_ESM.docx (94 kb)
Supplementary material 2 (DOCX 94 kb)

References

  1. 1.
    Duffett L. Patient engagement: what partnering with patient in research is all about. Thromb Res. 2017;150:113–20.CrossRefPubMedGoogle Scholar
  2. 2.
    Fagan MB, Wong C, Morrison CRC, Lewis-O’Connor A, Carnie MB. Patients, persistence and partnership: creating and sustaining patient and family advisory councils in a Hospital Setting. JCOM. 2016;23:219–25.Google Scholar
  3. 3.
    Pomey M, Hihat H, Khalifa M, Lebel P, Neron A. Patient partnerships in quality improvement of healthcare services: patients’ input and challenges faced. Patient Exp J. 2015;2:29–42.Google Scholar
  4. 4.
    Herrin J, Harris KG, Kenward K, Hones S, Joshi MS, Frosch DL. Patient and family engagement: a survey of US hospital practices. BMJ Qual Saf. 2015.  https://doi.org/10.1136/bmjqs-2015-004006.PubMedPubMedCentralCrossRefGoogle Scholar
  5. 5.
    Wolf JA. A report of the Beryl Institute benchmarking study state of patient experience 2015. Southlake Texas: Beryl Institute; 2017.Google Scholar
  6. 6.
    Haycock C, Wahl C. Achieving patient and family engagement through the implementation and evaluation of advisory councils across a large health care system. Nurse Adm Q. 2013;37:242–6.CrossRefGoogle Scholar
  7. 7.
    Fagan MB, Wong C, Carnie MB. Brigham and Women’s Hospital Patient and Family Advisory Council report. http://www.brighamandwomens.org/Patients_Visitors/patientresources/DPH_Report_Sept_2016.pdf. Accessed 07 Nov 2017.
  8. 8.
    Warren N. Involving patient and family advisors in the patient and family centered care models. MedSurg Nurs. 2012;21:232.Google Scholar
  9. 9.
    The Change Foundation. Patient/family advisory councils in Ontario hospitals: at work, in play. Part 1: emerging themes. http://www.changefoundation.ca/patient-family-advisory-councils-report/. Accessed 07 Nov 2017.
  10. 10.
    O’Leary KJ, Killarney A, Hanson LO, Jones S, Malladi M, Marks K, Shah HM. Effect of patient centered bedside rounds on hospitalised patients’ decision control, activation and satisfaction with care. BMJ Qual Saf. 2015.  https://doi.org/10.1136/bmjqs-2015-004561.CrossRefPubMedGoogle Scholar
  11. 11.
    Patient Centered Outcomes Research Institute (PCORI). What we mean by engagement. https://www.pcori.org/engagement/what-we-mean-engagement. Accessed 07 Nov 2017.
  12. 12.
    Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4:133–45.CrossRefPubMedGoogle Scholar
  14. 14.
    Sheridan S, Schrandt S, Forsythe L, Advisory Panel on Patient Engagement (2013 inaugural panel), Hillard TS, Paez KA. The PCORI Engagement Rubric: promising practices for partnering in research. Annals of Family Medicine. 2017;15:165–70.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Forsythe LP, Frank LB, Workman TA, Borsky A, Hilliard T, Harwell D, Fayish L. Health researcher views on comparative effectiveness research and research engagement. J Comp Eff Res. 2017;6:246–56.Google Scholar
  16. 16.
    Perez Jolles M, Martines M, Garcia SJ, Stein GL, Mentor Parent Group Members, Thomas KC. Involving Latina/o parents in patient-centered outcomes research: contributions to research study design, implementation and outcomes. Health Expect. 2017;00:1–9.  https://doi.org/10.1111/nex.12540.CrossRefGoogle Scholar
  17. 17.
    Holm KE, Casaburi R, Cerreta S, Gussin HA, Husbands J, Porszasz J, et al. Patient involvement in the design of a patient centered clinical trial to promote adherence to supplemental oxygen therapy in COPD. Patient Patient Cent Outcomes Res. 2016;9:271–9.CrossRefGoogle Scholar
  18. 18.
    Concannon TW, Meissner P, Grunbaum J, McElwee N, Guise J, Santa J, et al. A new taxonomy for stakeholder engagement in patient centered outcomes research. J Gen Intern Med. 2012;27:985–91.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Fagan MB, Morrison CRC, Wong C, Carnie MB, Gabbai-Saldate P. Implementing a pragmatic framework for authentic patient-researcher partnerships in clinical research. J Comp Eff Res. 2016;5:297–308.CrossRefPubMedGoogle Scholar
  20. 20.
    Auerbach A, Patel MS, Metlay JP, Schnipper JL, Williams MV, Robinson EJ, et al. The Hospital Medicine Reengineering Network (HOMERuN): a learning organization focused on improving hospital care. Acad Med. 2014;89:415–20.CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks: Sage Publications; 2002.Google Scholar
  22. 22.
    Forsythe LP, Ellis L, Edmundson L, Sabharwal R, Rein A, Konopka K, et al. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learnt. J Gen Intern Med. 2016;31:13–21.CrossRefPubMedGoogle Scholar
  23. 23.
    Forsythe LP, Frank L, Walker KO, Wegener N, Weisman H, Hunt G, et al. Patient and clinician views on comparative effectiveness research and engagement in research. J Comp Eff Res. 2015;4:11–25.CrossRefPubMedGoogle Scholar
  24. 24.
    Corbin J, Strauss A. Basics of qualitative research. 3rd ed. Los Angeles: Sage Publications; 2008.Google Scholar
  25. 25.
    Schreier M. Qualitative content analysis in practice. Los Angeles: Sage Publications; 2012.Google Scholar
  26. 26.
    Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes and theory. Health Serv Res. 2007;42(4):1758–72.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Supple D, Roberts A, Hudson V, Masefield S, Fitch N, Rahmen M, et al. From tokenism to meaningful patient engagement: best practices in patient involvement in a EU project. Res Involv Engagem. 2015;1:5.  https://doi.org/10.1186/s40900-015-0004-9.CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Cottrell EK, Whitcock EP, Kato E, Uhl S, Belinson S, Chang C, et al. Defining the benefits and challenges of stakeholder engagement in systematic reviews. Comp Eff Res. 2015;5:13–9.Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • James D. Harrison
    • 1
  • Wendy G. Anderson
    • 1
  • Maureen Fagan
    • 2
  • Edmondo Robinson
    • 3
  • Jeffrey Schnipper
    • 4
  • Gina Symczak
    • 5
  • Catherine Hanson
    • 6
  • Martha B. Carnie
    • 2
  • Jim Banta
    • 5
  • Sherry Chen
    • 1
  • Jonathan Duong
    • 1
  • Celene Wong
    • 2
  • Andrew D. Auerbach
    • 1
  1. 1.Division of Hospital MedicineUniversity of California San FranciscoSan FranciscoUSA
  2. 2.Center for Patients and Families, Brigham and Women’s HospitalBostonUSA
  3. 3.Department of MedicineChristiana Care Health SystemWilmingtonUSA
  4. 4.Department of MedicineBrigham and Women’s HospitalBostonUSA
  5. 5.Intensive Care Unit Patient and Family Advisory CouncilUniversity of California San FranciscoSan FranciscoUSA
  6. 6.University of Michigan Local Patient and Stakeholder CouncilAnn ArborUSA

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