Department of Health Management and Policy, College of Public Health, University of Iowa, Iowa City, IA, USA
Efforts to achieve effective and meaningful patient and public involvement (PPI) in healthcare have existed for nearly a century, albeit with limited success. This brief commentary discusses a recent paper by Carter and Martin exploring the “Challenges Facing Healthwatch, a New Consumer Champion in England,” and places these challenges in the context of the broader struggle to give a voice to healthcare consumers and citizens. With an overview of what can go right and—perhaps more importantly—what can go wrong, the question remains: will Healthwatch—and other PPI efforts in healthcare—represent the voice of consumers or citizens and will it matter?
Contandriopoulos D. A sociological perspective on public participation in health care. Soc Sci Med. 2004;58(2):321-330.
Cross M. Should consumers be present on an HMO's board of directors? Manag Care. 2002;11(11):22-28.
Pickard S, Marshall M, Rogers A, et al. User involvement in clinical governance. Health Expect. 2002;5(3):187-198.
Robins AJ, Blackburn C. Governing boards in mental health: Roles and training needs. Adm Policy Ment Health. 1974;2(1):37-45.
Schwartz JL. Participation of Consumers in Prepaid Health Plans. J Health Hum Behav. 1964;5(2/3):74-84.
Vladeck BC. Interest-group representation and the HSAs: health planning and political theory. Am J Pub Health. 1977;67(1):23-29.
Stewart EA, Greer SL, Wilson I, Donnelly PD. Power to the people? An international review of the democratizing effects of direct elections to healthcare organizations. Int J Health plan Manag. 2015;31(2):e69-e85. doi:10.1002/hpm.2282.
Stewart E. What is the point of citizen participation in health care? J Health Serv Res Policy. 2013;18(2):124-126.
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.
Chesney JD. Strategies for building representative HSAs: The impact of legal structure. J Health Polit Policy Law. 1982;7(1):96-110.
Morone JA, Kilbreth EH. Power to the people? Restoring citizen participation. J Health Polit Policy Law. 2003;28(2-3):271-288.
Carter P, Martin G. Challenges facing Healthwatch, a new consumer champion in England. Int J Health Policy Manag. 2016;5(4):259-263. doi: 10.15171/ijhpm.2016.07
Pitkin H. The Concept of Representation. Berkeley: The University of California Press; 1967.
Martin GP. Citizens, publics, others and their role in participatory processes: A commentary on Lehoux, Daudelin and Abelson. Social Sci Med. 2012;74(12):1851-1853.
Windle C, Bass RD, Taube CA. PR aside: Initial results from NIMH's service program evaluation studies. Am J Community Psychol. 1974;2(3):311-327.
Wright B. Do patients have a voice? The social stratification of health center governing boards. Health Expect. 2015;18(3):430-437.
Berger J, Cohen BP, Zelditch Jr M. Status characteristics and social interaction. American Sociological Review. 1972;37(3):241-255.
Webster M Jr, Driskell Jr JE. Status generalization: A review and some new data. Am Sociol Rev. 1978;43(2):220-236.
Dovi S. In Praise of Exclusion. J Polit. 2009;71(3):1172-1186.
Greer SL, Stewart EA, Wilson I, Donnelly PD. Victory for volunteerism? Scottish health board elections and participation in the welfare state. Social Sci Med. 2014;106:221-228.
Litva A, Canvin K, Shepherd M, Jacoby A, Gabbay M. Lay perceptions of the desired role and type of user involvement in clinical governance. Health Expect. 2009;12(1):81-91. doi:10.1111/j.1369-7625.2008.00530.x
Wright B. Who Governs Federally Qualified Health Centers? J Health Polit Policy Law. 2013;38(1):27-55.
Learmonth M, Martin GP, Warwick P. Ordinary and effective: the Catch‐22 in managing the public voice in health care? Health Expect. 2009;12(1):106-115.
Gaventa J. Poverty, participation and social exclusion in North and South. IDS Bull. 1998;29(1):50-57.
Dudley JR. Citizens'boards for Philadelphia community mental health centers. Community Ment Health J. 1975;11(4):410-417.
Grant J. The Participation of Mental Health Service Users in Ontario, Canada: A Canadian Application of the Consumer Participation Questionnaire. Int J Soc Psychiatry. 2007;53(2):148-158.
Scherl DJ, English JT. Community mental health and comprehensive health service programs for the poor. Am J Psychiatry. 1969;125(12):1666-1674.
Thomson R. The whys and why nots of consumer participation. Community Ment Health J. 1973;9(2):143-150.
Ives J, Damery S, Redwod S. PPI, paradoxes and Plato: who's sailing the ship? J Med Ethics. 2013;39(3):181-185.
Staley K. There is no paradox with PPI in research. J Med Ethics. 2013;39(3):186-187.