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'The public is too subjective': public involvement at different levels of health-care decision making

Author

Listed:
  • Litva, Andrea
  • Coast, Joanna
  • Donovan, Jenny
  • Eyles, John
  • Shepherd, Michael
  • Tacchi, Jo
  • Abelson, Julia
  • Morgan, Kieran

Abstract

There are a number of impulses towards public participation in health care decision making including instrumentalist, communitarian, educative and expressive impulses and the desire for increased accountability. There has, however, been little research looking systematically at the public's preferences for being involved in particular types of rationing decisions, nor indeed, has there been a critical examination of the degree of involvement desired by the public. The research reported here uses findings from focus groups and in-depth interviews to explore these questions. Eight focus groups were conducted with a total of 57 informants, four amongst randomly selected members of the public and four with informants from health and non-health related organisations. Nineteen interviews were conducted to allow the elaboration of focus group comments, to probe views more deeply and to pursue emerging themes. The findings show variations in the willingness of members of the public to be involved in health care decisions and consistency across the different forms of the public as represented by the focus groups with randomly selected citizens and pre-existing organisations. There was a strong desire in all the groups for the public to be involved both at the system and programme levels, with much less willingness to be involved at the individual level. At the system and programme levels informants generally favoured consultation, without responsibility for decisions, but with the guarantee that their contribution would be heard and that decisions taken following consultation would be explained. At the patient level informants felt that the public should participate only by setting criteria for deciding between potential beneficiaries of treatment. The public has much to contribute, particularly at the system and programme levels, to supplement the inputs of health care professionals.

Suggested Citation

  • Litva, Andrea & Coast, Joanna & Donovan, Jenny & Eyles, John & Shepherd, Michael & Tacchi, Jo & Abelson, Julia & Morgan, Kieran, 2002. "'The public is too subjective': public involvement at different levels of health-care decision making," Social Science & Medicine, Elsevier, vol. 54(12), pages 1825-1837, June.
  • Handle: RePEc:eee:socmed:v:54:y:2002:i:12:p:1825-1837
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    Cited by:

    1. van Exel, Job & Baker, Rachel & Mason, Helen & Donaldson, Cam & Brouwer, Werner, 2015. "Public views on principles for health care priority setting: Findings of a European cross-country study using Q methodology," Social Science & Medicine, Elsevier, vol. 126(C), pages 128-137.
    2. Nasim Gholami & Mojtaba ANSARI & Mohammadjavad MAHDAVINEJAD, 2018. "A Scientometric Review Of Citizen Participation Research: World Trend," Theoretical and Empirical Researches in Urban Management, Research Centre in Public Administration and Public Services, Bucharest, Romania, vol. 13(3), pages 37-53, August.
    3. John Brazier & Donna Rowen & Milad Karimi & Tessa Peasgood & Aki Tsuchiya & Julie Ratcliffe, 2018. "Experience-based utility and own health state valuation for a health state classification system: why and how to do it," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 19(6), pages 881-891, July.
    4. Gauvin, Francois-Pierre & Abelson, Julia & Giacomini, Mita & Eyles, John & Lavis, John N., 2010. ""It all depends": Conceptualizing public involvement in the context of health technology assessment agencies," Social Science & Medicine, Elsevier, vol. 70(10), pages 1518-1526, May.
    5. Pivik, Jayne & Rode, Elisabeth & Ward, Christopher, 2004. "A consumer involvement model for health technology assessment in Canada," Health Policy, Elsevier, vol. 69(2), pages 253-268, August.
    6. Darker, Catherine D. & Donnelly-Swift, Erica & Whiston, Lucy, 2018. "Demographic factors and attitudes that influence the support of the general public for the introduction of universal healthcare in Ireland: A national survey," Health Policy, Elsevier, vol. 122(2), pages 147-156.
    7. Jane Robertson & Emily J Walkom & David A Henry, 2011. "Health Systems and Sustainability: Doctors and Consumers Differ on Threats and Solutions," PLOS ONE, Public Library of Science, vol. 6(4), pages 1-9, April.
    8. Degeling, Chris & Carter, Stacy M. & Rychetnik, Lucie, 2015. "Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research," Social Science & Medicine, Elsevier, vol. 131(C), pages 114-121.
    9. Malfait, S. & Van Hecke, A. & De Bodt, G. & Palsterman, N. & Eeckloo, K., 2018. "Patient and public involvement in hospital policy-making: Identifying key elements for effective participation," Health Policy, Elsevier, vol. 122(4), pages 380-388.
    10. O'Meara, Wendy Prudhomme & Tsofa, Benjamin & Molyneux, Sassy & Goodman, Catherine & McKenzie, F. Ellis, 2011. "Community and facility-level engagement in planning and budgeting for the government health sector - A district perspective from Kenya," Health Policy, Elsevier, vol. 99(3), pages 234-243, March.
    11. Broqvist, Mari & Garpenby, Peter, 2015. "It takes a giraffe to see the big picture – Citizens' view on decision makers in health care rationing," Social Science & Medicine, Elsevier, vol. 128(C), pages 301-308.
    12. Chung, Phillip & Grogan, Colleen M. & Mosley, Jennifer E., 2012. "Residents' perceptions of effective community representation in local health decision-making," Social Science & Medicine, Elsevier, vol. 74(10), pages 1652-1659.
    13. Thurston, Wilfreda E. & MacKean, Gail & Vollman, Ardene & Casebeer, Ann & Weber, Myron & Maloff, Bretta & Bader, Judy, 2005. "Public participation in regional health policy: a theoretical framework," Health Policy, Elsevier, vol. 73(3), pages 237-252, September.
    14. Rosenberg-Yunger, Zahava R.S. & Thorsteinsdóttir, Halla & Daar, Abdallah S. & Martin, Douglas K., 2012. "Stakeholder involvement in expensive drug recommendation decisions: An international perspective," Health Policy, Elsevier, vol. 105(2), pages 226-235.
    15. Malcolm Anderson & Jeff Richardson & John McKie & Angelo Iezzi & Munir Khan, 2011. "The Relevance of Personal Characteristics in Health Care Rationing: What the Australian Public Thinks and Why," American Journal of Economics and Sociology, Wiley Blackwell, vol. 70(1), pages 131-151, January.
    16. Lea de Jong & Jan Zeidler & Kathrin Damm, 2022. "A systematic review to identify the use of stated preference research in the field of older adult care," European Journal of Ageing, Springer, vol. 19(4), pages 1005-1056, December.

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