From Craft to Reflective Art and Science; Comment on “Metrics and Evaluation Tools for Patient Engagement in Healthcare Organization- and System-Level Decision-Making: A Systematic Review”

Document Type : Commentary

Author

Center of Excellence on Partnership with Patients and the Public, University of Montreal Hospital Research Center (CRCHUM), Montreal, QC, Canada

Abstract

Patient engagement practices are increasingly incorporated in health research, governance, and care. More recently, a large number of evaluation tools and metrics have been developed to support engagement evaluation. This growing interest in evaluation reflects a maturation of the patient engagement field, moving from a “craft” to a reflective “art and science,” with more explicit expected benefits and risks, better understood conditions for success and failure, and increasingly rigorous evaluation instruments to improve engagement theories and interventions. It also supports a more critical view of engagement science, moving beyond reductionist views of engagement as a “black box technology” to a more subtle view of this broad category of complex interventions. Structured evaluation can advance patient engagement by supporting more reflective partnerships between patients, clinicians, health system leaders and citizens. This can help clarify mutual (and potentially contradictory) expectations toward engagement, provide a reality check toward claims of benefits and harms, and increase health systems’ capacity to implement effective engagement practices over time. To do so, closer collaborations are required between engagement scientists and practitioners to align the theories, practice and evaluation of patient and community engagement.

Keywords

Main Subjects


  1. Conklin A, Morris ZS, Nolte E. Involving the Public in Healthcare Policy. RAND Europe; 2010:1-83.
  2. Bombard Y, Baker GR, Orlando E, et al. Engaging patients to improve quality of care: a systematic review. Implement Sci. 2018;13(1):98. doi:10.1186/s13012-018-0784-z
  3. Facey K, Boivin A, Gracia J, et al. Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation. Int J Technol Assess Health Care. 2010;26(3):334-340. doi:10.1017/s0266462310000395
  4. Boivin A, Currie K, Fervers B, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care. 2010;19(5):e22. doi:10.1136/qshc.2009.034835
  5. Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. doi:10.1186/1472-6963-14-89
  6. Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: A scoping review. Health Policy. 2009;91(3):219-228. doi:10.1016/j.healthpol.2009.01.005
  7. Olsson LE, Jakobsson Ung E, Swedberg K, Ekman I. Efficacy of person-centred care as an intervention in controlled trials - a systematic review. J Clin Nurs. 2013;22(3-4):456-465. doi:10.1111/jocn.12039
  8. 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
  9. Boivin A, L'Esperance A, Gauvin FP, et al. Patient and public engagement in research and health system decision making: A systematic review of evaluation tools. Health Expect. 2018. doi:10.1111/hex.12804
  10. Bowen DJ, Hyams T, Goodman M, West KM, Harris-Wai J, Yu JH. Systematic Review of Quantitative Measures of Stakeholder Engagement. Clin Transl Sci. 2017;10(5):314-336. doi:10.1111/cts.12474
  11. Phillips NM, Street M, Haesler E. A systematic review of reliable and valid tools for the measurement of patient participation in healthcare. BMJ Qual Saf. 2016;25(2):110-117. doi:10.1136/bmjqs-2015-004357
  12. Donabedian A. Evaluating the quality of medical care. Milbank Mem Fund Q. 1966;44(3):Suppl:166-206.  
  13. Martin GP. Representativeness, legitimacy and power in public involvement in health-service management. Soc Sci Med. 2008;67(11):1757-1765. doi:10.1016/j.socscimed.2008.09.024
  14. Declaration of Alma-Ata. International Conference on Primary Health Care, Alma-Ata, USSR; September 6-12, 1978:1-3.
  15. Health Promotion. The Ottawa Charter for Health Promotion. http://www.who.int/healthpromotion/conferences/previous/ottawa/en/.  Published 1986.
  16. Rosener JB. User-oriented evaluation: A new way to view citizen participation. J Appl Behav Sci. 1981;17(4):583-596. doi:10.1177/002188638101700412
  17. Dentzer S. Rx for the 'blockbuster drug' of patient engagement. Health Aff (Millwood). 2013;32(2):202. doi:10.1377/hlthaff.2013.0037
  18. Crawford MJ, Rutter D, Manley C, et al. Systematic review of involving patients in the planning and development of health care. BMJ. 2002;325(7375):1263.
  19. Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006(3):Cd004563. doi:10.1002/14651858.CD004563.pub2
  20. Abelson J, Gauvin F. Assessing the Impacts of Public Participation: Concepts, Evidence and Policy Implications. Research Report P06. Canadian Policy Research Networks. http://www.cprn.org/documents/42669_fr.pdf.  Accessed March 12, 2014. Published March 2006.
  21. Edelman N, Barron D. Evaluation of public involvement in research: time for a major re-think? J Health Serv Res Policy. 2016;21(3):209-211. doi:10.1177/1355819615612510
  22. Boivin A, Lehoux P, Burgers J, Grol R. What are the key ingredients for effective public involvement in health care improvement and policy decisions? A randomized trial process evaluation. Milbank Q. 2014;92(2):319-350. doi:10.1111/1468-0009.12060
  23. Jagosh J, Bush PL, Salsberg J, et al. A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects. BMC Public Health. 2015;15:725. doi:10.1186/s12889-015-1949-1
  24. Evans D, Coad J, Cottrell K, et al. Public involvement in research: assessing impact through a realist evaluation. Health Services and Delivery Research. 2014;2(36):1-128. doi:10.3310/hsdr02360
  25. Rowe G, Frewer LJ. Evaluating public-participation exercises: a research agenda. Sci Technol Hum Values. 2004;29(4):512-556. doi:10.1177/0162243903259197
  26. Schon DA. The Reflective Practitioner: How Professionals Think in Action. Routledge; 2017.
  27. Abelson J, Forest PG, Eyles J, Casebeer A, Martin E, Mackean G. Examining the role of context in the implementation of a deliberative public participation experiment: results from a Canadian comparative study. Soc Sci Med. 2007;64(10):2115-2128. doi:10.1016/j.socscimed.2007.01.013
  28. Wimbush E, Montague S, Mulherin T. Applications of contribution analysis to outcome planning and impact evaluation. Evaluation. 2012;18(3):310-329. doi:10.1177/1356389012452052
  29. Carel H, Kidd IJ. Epistemic injustice in healthcare: a philosophial analysis. Med Health Care Philos. 2014;17(4):529-540. doi:10.1007/s11019-014-9560-2
  30. Becker S, Sempik J, Bryman A. Advocates, agnostics and adversaries: Researchers' perceptions of service user involvement in social policy research. Soc Policy Soc. 2010;9(3):355-366. doi:10.1017/S1474746410000072
  31. Foley T, Fairmichael F. The Potential of Learning Healthcare Systems. The Learning Healthcare Project; 2015.
  32. Gancia A, David G, Gregoire A, Wong C, Boivin A. Evaluating patient partnerships formed within Quebec’s SPOR Support Unit at the research project, network and governance levels. Vancouver, BC, Canada: KT Canada Annual Scientific Meeting; 2018.
Volume 8, Issue 2
February 2019
Pages 124-127
  • Receive Date: 30 August 2018
  • Revise Date: 29 October 2018
  • Accept Date: 31 October 2018
  • First Publish Date: 01 February 2019