Public Participation in Health Care Decision-Making
This term’s UCL/KCL series of Social Values Workshops will be dedicated to the role of public participation in health care decision-making.
The involvement of patients and the public in health care decision-making continues to receive much attention, both at a research and at a policy level. This attention arises against the background of financial pressures on health care budgets that make difficult choices on the allocation of health care resources inevitable. The question that emerges for commissioners and policy-makers alike is how to make legitimate and acceptable decisions in times of budget constraints. The participation of the public and patients is considered to be an important contributor to increased legitimacy of health care allocation decisions.
Each workshop will be a roundtable discussion of a core text along with additional materials. We hope that you will join us in shedding light on the current theories, practice and challenges on public involvement in health care in an effort to better understand how effective public participation strategies might be designed.
The seminar meets on Fridays, 13.00-15.00 in the School of Public Policy, in the ground floor seminar room.
Week One: October 17th 2014 [James Wilson]
‘Theories of deliberative democracy’
- Gutmann and Thompson: Why Deliberative Democracy? - esp. pp. 1-39.
- Dryzek, John S. (2000) Deliberative Democracy and Beyond: Liberals, Critics, Contestations (Oxford: Oxford University Press).
- Richardson, Henry S. (2002) Democratic Autonomy: Public Reasoning about the Ends of Policy (Oxford: Oxford University Press).
- Blattberg, C., ‘Patriotic, not deliberative, democracy’ Critical Review of International Social and Political Philosophy 6 (1):155-174 (2003)
Week Two: October 24th 2014 [Albert Weale]
‘Democratic Deliberation and Health Care Priority Setting’
- Abelson et al 2013: Public Deliberation in Health Policy and Bioethics: Mapping an emerging, interdisciplinary field
- Editorial to symposium on the topic (http://www.publicdeliberation.net/jpd/vol9/iss1/)
- Abelson, J., Giacomini, M., Lehoux, P. and Gauvin, F-P. 2007. Bringing the ‘public’ into health technology assessment and coverage policy decisions: From principles to practice. Health Policy, 82, pp. 37-50.
- Harrison, S. and Mort, M. 1998. Which Champions, which people? Public and user involvement in health care as a technology of legitimation. Social Policy and Administration, 32(1), pp. 60-70.
- Mitton, C., Smith, N., Peacock, S., Evoy, B. and Abelson, J. 2009. Public participation in health care priority setting: A scoping review. Health Policy, 91, pp. 219-228.
- Schmidt / Kreis 2013: Public engagement in HTA / coverage deiciosn in Germany / France / UK (http://jhppl.dukejournals.org/content/early/2012/10/09/03616878-1898812.full.pdf)
Week Three: October 31st 2014 [Peter Littlejohns]
‘The Evidence: Do deliberative processes make a difference?’
- Culyer, A.J. and Lomas, J. 2006. Deliberative processes and evidence-informed decision making in healthcare: do they work and how might we know? Evidence & Policy, 2(3), pp. 357-371.
- Whitty, J.A., Burton, P., Kendall, E., Ratcliffe, J., Wilson, A., Littlejohns, P. and Scuffham, P.A. 2014. Harnessing the potential to quantify public preferences for health care priorities through citizens’ juries. International Journal of Health Policy Management, 3(2), pp. 57-62.
- Papadopolous, Y. and Warin, P. 2007. Are innovative, participatory and deliberative procedures in policy making democratic and effective? European Journal of Political Research, 46, pp. 445-472.
- Litva et al. 2002. ‘The public is too subjective’: public involvement at different levels of health care decision making. Social Science & Medicine, 54, pp. 1825-1837.
- Abelson, J., Eyles, J., McLeod, C.B., Collins, P., McMullan, C. and Forest, P-G. 2003. Does deliberation make a difference? Results from a citizens panel study of health goals priority setting. Health Policy, 66, pp. 95-106.
- Wiseman et al. 2003. Involving the general public in priority setting: Experiences from Australia. Social Science & Medicine, 56, pp. 1001-1012.
- Current work from the Stanford Centre for Deliberative Democracy (James Fishkin): http://cdd.stanford.edu/
Week Four: November 21st 2014 [Benedict Rumbold]
‘Eliciting Preferences: Why Not Just Ask?’
- Hausman, D., (unpublished?) ‘Why Not Just Ask? Preferences, “Empirical Ethics” and the Role of Ethical Reflection’ (http://philosophy.wisc.edu/hausman/papers/Hausman-why-not.pdf)
- Powers and Faden, 2006, ‘Justice, Democracy and Social Values’ in Social Justice: The Moral Foundations of Public Health and Health Policy.
- Jacobs, L., Marmor, T. and Oberlander, J. 1999. The Oregon Health Plan and the Political Paradox of Rationing: What Advocates and Critics have claimed and what Oregon did. Journal of Health Politics, Policy and Law, 24 (1), pp. 161-180.
- Torgerson D, Gosden T. Priority setting in health care: should we ask the tax payer? BMJ.2000;320:1679.
- Cookson, R., Priority setting in health care: Of course we should ask the tax payer BMJ. Oct 14, 2000; 321(7266): 954.
- Eric Nord?
Week Five: November 28th 2014 [Annette Rid]
‘Transparency and Appeal: Daniels’ and Sabin’s accountability for reasonableness framework’
- Daniels, N., (2008) “Just Health”
- Syrett, 2011: AFR and judicial model of procedural justice (http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=8368262)
- Ashcroft 2008: Fair process and redundancy of bioethics - a polemic (http://phe.oxfordjournals.org/content/1/1/3.short)
- Hasman / Holm 2005: Accountability for reasonableness - opening the black box of process (http://link.springer.com/article/10.1007/s10728-005-8124-2)
- Lauridsen / Lippert-Rasmussen 2009: Beyond AFR (phe.oxfordjournals.org/content/early/2009/02/05/phe.php001.short)
- Ford 2014: AFR and exceptionality in resource allocation (link.springer.com/article/10.1007/s11019-014-9592-7)
- Nunes / Rego 2013: Complemt to AFR (link.springer.com/article/10.1007/s10728-013-0243-6)
- Rid 2009: How does accountability for reasonableness result in fair limit-setting decisions? (jme.bmj.com/content/35/1/12.short)
- Friedman, A. 2008. Beyond accountability for reasonableness. Bioethics, 22(2), pp. 101-112.
- Sabik / Lie 2008: Conflict between principles and procedures in making health coverage decisions (http://link.springer.com/article/10.1007%2Fs11017-008-9062-4)
Week Six: December 5th 2014 [Katharina Kieslich]
‘Does Accountability for Reasonableness Work?’
- Hasman et al 2008: What reasons do those with practical experience use in deciding on priorities for healthcare resources? A qualitative study (http://jme.bmj.com/content/34/9/658.short)
- Kapirir et al 2009: Views on AFR in different health systems and levels of decision making (http://www.sciencedirect.com/science/article/pii/S0277953608006035)
- Maluka et al: Implementing AFR in Tansania (http://www.biomedcentral.com/content/pdf/1748-5908-6-11.pdf, http://www.sciencedirect.com/science/article/pii/S0277953610003849 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3211296/)
- Schlander 2007: NICE AFR (http://informahealthcare.com/doi/abs/10.1185/030079906X159461)
- Schlander 2008: NICE not yet exemplar of deliberative process (jme.bmj.com/content/34/7/534.short)
- Schlander: Health Technology Assesments by NICE: A qualitative study (http://books.google.co.uk/books?hl=en&lr=&id=6jCKL60D6f8C&oi=fnd&pg=PA3&ots=h69n8x37R8&sig=gBovp1jtb85aYEb1JQyGFJoFPBw#v=onepage&q&f=false)
Week Seven: December 12th 2014
‘What is ‘successful’ public participation in health care?’
Summary of foregoing discussions
Given limited available space, please confirm attendance for any of the seminars above with Benedict Rumbold (firstname.lastname@example.org).