International Journal of Health Policy and Management

International Journal of Health Policy and Management

Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative; Comment on “The Rise of the Consucrat”

Document Type : Commentary

Authors
Matthew DeCamp 1, 2
Sarah E. Brewer 3
Vadim Dukhanin 4
1 Division of General Internal Medicine, University of Colorado, Aurora, CO, USA
2 Center for Bioethics and Humanities, University of Colorado, Aurora, CO, USA
3 Department of Family Medicine, University of Colorado, Aurora, CO, USA
4 Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA
10.34172/ijhpm.2020.148
Abstract
Patient, public, consumer, and community (P2C2) engagement in healthcare delivery, research, and policy-making has been long considered an ethical obligation and is increasingly a regulatory requirement globally. The requirement to include a P2C2 member on various governing bodies may have inadvertently created what Evelyne de Leeuw calls the “consucrat” – a career consumer who has been designated and professionalized to function on behalf of a particular group or community. The concept of a consucrat can be problematic when a P2C2 member is co-opted by an institution governing body or in situations where institutions only seek and listen to the same voice over time. In this commentary, we suggest that one way to avoid these problems is to take seriously the concept and process of representation. Representation is only meaningful when P2C2 members are actively connected with those whom they represent. Doing so helps ensure P2C2 members remain grounded in the real-world concerns of their constituency and that representatives, backed by the voices of others, will be more powerful in effecting change.
Keywords
Patient Engagement
Patient Participation
Representation
Healthcare Governance
Consumer
  1. de Leeuw E. The rise of the consucrat. Int J Health Policy Manag. 2020; In Press. doi: 10.34172/IJHPM.2020.36
  2. Arnstein SR. A ladder of citizen participation. J Am Inst Plann. 1969;35(4):216-224. doi:10.1080/01944366908977225
  3. Dukhanin V, Topazian R, DeCamp M. Metrics and evaluation tools for patient engagement in healthcare organization- and system-level decision-making: a systematic review. Int J Health Policy Manag. 2018;7(10):889-903. doi:10.15171/ijhpm.2018.43
  4. Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool. Health Expect. 2016;19(4):817‐827. doi: 10.1111/hex.12378
  5. Boivin A, Dumez V, Fancott C, L'Espérance A. Growing a healthy ecosystem for patient and citizen partnerships. Healthc Q. 2018;21(SP):73-82. doi:10.12927/hcq.2018.25634
  6. Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013;32(2):223-231. doi:10.1377/hlthaff.2012.1133
  7. Sharma AE, Huang B, Knox M, Willard-Grace R, Potter MB. Patient Engagement in Community Health Center Leadership: How Does it Happen? J Community Health. 2018;43(6):1069-1074. doi:10.1007/s10900-018-0523-z
  8. Wright B. Do patients have a voice? The social stratification of health center governing boards. Health Expect. 2015;18(3):430-437. doi:10.1111/hex.12059
  9. Dresser R. When Science Offers Salvation: Patient Advocacy and Research Ethics. New York, NY: Oxford University Press; 2001.
  10. Hoffman B, Tomes N, Grob R, Schlesinger M, eds. Patients as Policy Actors. London: Rutgers University Press; 2011.
  11. Declaration of Alma-Ata. WHO Chron. 1978;32(11):428-430.
  12. Dumez V, Boivin A. A Canadian Take on the International Patient Engagement Revolution. Healthc Q. 2018;21(SP):1-6. doi:10.12927/hcq.2018.25643
  13. Culyer AJ. Involving stakeholders in healthcare decisions-- the experience of the National Institute for Health and Clinical Excellence (NICE) in England and Wales. Healthc Q. 2005;8(3):56-60. doi:10.12927/hcq..17155  
  14. Bath J, Wakerman J. Impact of community participation in primary health care: What is the evidence? Aust J Prim Health. 2015;21(1):2- 8. doi:10.1071/PY12164
  15. Peikes D, OʼMalley AS, Wilson C, et al. Early Experiences Engaging Patients Through Patient and Family Advisory Councils. J Ambul Care Manage. 2016;39(4):316-324. doi:10.1097/JAC.0000000000000150
  16. Swan LF. Meeting the challenges of medicine today. Address of the retiring president, National Medical Association. J Natl Med Assoc. 1968;60(5):424-passim.
  17. Jeppson ES, Thomas J. Essential Allies: Families as Advisors. Washington, DC: Institute for Family-Centered Care; 1995.
  18. Tsang VWL, Chew SY, Junker AK. Facilitators and barriers to the training and maintenance of young persons’ advisory groups (YPAGs). Int J Pediatr Adolesc Med. 2019; In Press. doi:10.1016/j.ijpam.2019.10.002
  19. Dukhanin V, Feeser S, Berkowitz SA, DeCamp M. Who represents me? A patient-derived model of patient engagement via patient and family advisory councils (PFACs). Health Expect. 2020;23(1):148-158. doi:10.1111/hex.12983
  20. Pitkin H. The Concept of Representation. Berkeley, CA: University of California; 1967.
  21. Castro EM, Van Regenmortel T, Sermeus W, Vanhaecht K. Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis. Soc Theory Health. 2019;17(3):307-330. doi:10.1057/s41285-018-0081-6
  22. DeCamp M, Dukhanin V, Hebert LC, Himmelrich S, Feeser S, Berkowitz SA. Patients’ views about patient engagement and representation in health care governance. J Healthc Manag. 2019;64(5):332-346. doi:10.1097/JHM-D-18-00152
  23. Madden EF. Healthcare workers mobilising cultural health capital to assist socially marginalised patients. Health Sociol Rev. 2018;27(2):214-228. doi:10.1080/14461242.2017.1387069
  24. Im H. Constructing health capital in ecological systems: A qualitative evaluation of community-based health workshops in the refugee community. Health Soc Care Community. 2018;26(4):e541-e551. doi:10.1111/hsc.12568
  25. Montreuil M, Martineau JT, Racine E. Exploring Ethical Issues Related to Patient Engagement in Healthcare: Patient, Clinician and Researcher's Perspectives. J Bioeth Inq. 2019;16(2):237-248. doi:10.1007/s11673-019-09904-6
  26. Fisher M, Brewer SE, Westfall JM, et al. Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks. J Am Board Fam Med. 2019;32(5):663-673. doi:10.3122/jabfm.2019.05.190038
  27. Harrison JD, Auerbach AD, Anderson W, et al. Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities. Health Expect. 2019;22(3):307-316. doi:10.1111/hex.12873
  28. Hamilton CB, Hoens AM, McQuitty S, et al. Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective. PLoS One. 2018;13(11):e0206588. doi:10.1371/journal.pone.0206588
  29. Bourque CJ, Bonanno M, Dumont É, et al. The integration of resource patients in collaborative research: a mixed method assessment of the nesting dolls design. Patient Educ Couns. 2020; In Press. doi:10.1016/j.pec.2020.04.011
  30. Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract. 2017;34(3):290-295. doi:10.1093/fampra/cmw097
International Journal of Health Policy and Management
Volume 10, Issue 8
August 2021
Pages 503-506

  • Received Date 16 June 2020
  • Revised Date 27 July 2020
  • Accepted Date 28 July 2020
  • First Published Date 01 August 2021
  • Published Date 01 August 2021