Involving patients in health technology funding decisions: Stakeholder perspectives on processes used in Australia

Health Expectations

Volumn 19, Issue 2, 2016, Pages 331-344

  Lopes, Edilene ^a   Street, Jackie ^a   Carter, Drew ^a   Merlin, Tracy ^a  

^a UNIVERSITY OF ADELAIDE   (Australia)

Author keywords

Australia; Decision making; Evaluation; Health policy; Health technology assessment; Public and patient involvement

Indexed keywords

ADULT; ADVISORY COMMITTEE; AGED; AUSTRALIA; BIOMEDICAL TECHNOLOGY ASSESSMENT; DECISION MAKING; ECONOMICS; FEMALE; GOVERNMENT; HEALTH CARE FINANCING; HEALTH CARE POLICY; HUMAN; MALE; MANAGEMENT; MEDICAL TECHNOLOGY; MIDDLE AGED; PATIENT PARTICIPATION; YOUNG ADULT;

ADULT; ADVISORY COMMITTEES; AGED; AUSTRALIA; BIOMEDICAL TECHNOLOGY; DECISION MAKING; FEDERAL GOVERNMENT; FEMALE; HEALTH POLICY; HEALTHCARE FINANCING; HUMANS; MALE; MIDDLE AGED; PATIENT PARTICIPATION; POLICY MAKING; TECHNOLOGY ASSESSMENT, BIOMEDICAL; YOUNG ADULT;

EID: 84961215417     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/hex.12356     Document Type: Article

References (65)

1. Charles C, Demaio S. Lay participation in health-care decision-making - a conceptual-framework. Journal of Health Politics Policy and Law, 1993; 18: 881-904.
2. Rowe G, Frewer LJ. A typology of public engagement mechanisms. Science, Technology, & Human Values, 2005; 30: 251-290.
3. Zakus JDL, Lysack CL. Revisiting community participation. Health Policy and Planning, 1998; 13: 1-12.
4. Abelson J, Gauvin FP. Watling. Primer on public involvement. Toronto, ON: Health Council of Canada, 2006.
5. Beierle TC, Konisky DM. Values, conflict, and trust in participatory environmental planning. Journal of Policy Analysis and Management, 2000; 19: 587-602.
6. Conklin A, Morris ZS, Nolte E. Involving the Public in Healthcare Policy: An Update of the Research Evidence and Proposed Evaluation Framework. Santa Monica, CA: RAND Corporation, 2010.
7. Cuthill M, Fien J. Capacity building: facilitating citizen participation in local governance. Australian Journal of Public Administration, 2005; 64: 63-80.
8. Cuthill M. Exploratory research: citizen participation, local government and sustainable development in Australia. Sustainable Development, 2002; 10: 79-89.
9. Gagnon MP, Lepage-Savary D, Gagnon J et al. Introducing patient perspective in health technology assessment at the local level. BMC Health Services Research, 2009; 9: 54.
10. Head BW. Community engagement: participation on whose terms? Australian Journal of Political Science, 2007; 42: 13.
11. Organisation for Economic Co-operation and Development (OECD). Citizens as Partners - Information, Consultation and Public Participation in Policy-Making. Paris: OECD Publishing, 2001.
12. Abelson J, Forest PG. Towards more meaningful, informed, and effective public consultation. Ottawa: Canadian Health Services Research Foundation, 2004.
13. Baggott R. A funny thing happened on the way to the forum? Reforming patient and public involvement in the NHS in England. Public Administration, 2005; 83: 533-551.
14. Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. "It all depends": conceptualizing public involvement in the context of health technology assessment agencies. Social Science & Medicine, 2010; 70: 1518-1526.
15. Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. Moving cautiously: public involvement and the health technology assessment community. International Journal of Technology Assessment in Health Care, 2011; 27: 43-49.
16. Bombard Y, Abelson J, Simeonov D, Gauvin FP. Eliciting ethical and social values in health technology assessment: a participatory approach. Social Science & Medicine, 2011; 73: 135-144.
17. Menon D, Stafinski T. Role of patient and public participation in health technology assessment and coverage decisions. Expert Review of Pharmacoeconomics & Outcomes Research, 2011; 11: 75-89.
18. Menon D, Stafinski T. Engaging the public in priority-setting for health technology assessment: findings from a citizens' jury. Health Expectations, 2008; 11: 282-293.
19. Organisation for Economic Co-operation and Development (OECD). Evaluating Public Participation in Policy Making. Paris: OECD Publishing, 2005.
20. Rowe G, Frewer LJ. Public participation methods: a framework for evaluation. Science, Technology, & Human Values, 2000; 25: 26.
21. Rowe G, Frewer LJ. Evaluating public-participation exercises: a research agenda. Science, Technology, & Human Values, 2004; 29: 512-557.
22. Whitty JA. An international survey of the public engagement practices of Health Technology Assessment organizations. Value in Health, 2013; 16: 155-163.
23. Abelson J, Forest PG, Eyles J, Smith P, Martin E, Gauvin FP. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Social Science & Medicine, 2003; 57: 12.
24. Lehoux P, Blume S. Technology assessment and the sociopolitics of health technologies. Journal of Health Politics Policy and Law, 2000; 25: 1083-1120.
25. Hailey D. The history of health technology assessment in Australia. International Journal of Technology Assessment in Health Care, 2009; 25: 61-67.
26. International Network of Agencies for Health Technology Assessment (INAHTA). About INAHTA. 2014. Available online at: http://www.inahta.org/about-inahta/
27. Facey K. Health Technology Assessment (HTA). HTA Glossary. International Network for Agencies in Health Technology Assessment, 2006. Available online at: http://htaglossary.net/HomePage
28. Patton MQ. Qualitative Research & Evaluation Methods/Michael Quinn Patton, 3rd edn. Thousand Oaks, CA: Sage Publications, 2002.
29. Foucault M. The subject and power. Critical Inquiry, 1982; 8: 19.
30. Foucault M. Fearless Speech. Los Angeles, CA: Semiotext(e), 2001.
31. Foucault M. The Essential Works of Michel Foucault, 1954-1984, Vol. 3. London: Penguin, 2000.
32. Foucault M. Ethics: Subjectivity and Truth. New York: New Press, 1997.
33. Foucault M. The Birth of the Clinic: An Archaeology of Medical Perception. London: Routledge, 1989.
34. Foucault M. The Archaeology of Knowledge. New York: Pantheon Books, 1972.
35. Foucault M, Gordon C. Power/Knowledge: Selected Interviews and Other Writings, 1972-1977. New York: Vintage, 1980.
36. Foucault M. On governmentality. Ideology & Consciousness, 1979; 6: 5-21.
37. Abelson J, Forest PG, Eyles J et al. Will it make a difference if I show up and share? A citizens' perspective on improving public involvement processes for health system decision-making. Journal of Health Services Research and Policy, 2004; 9: 205-212.
38. Oxford University Press. Oxford American Large Print Dictionary. New York, NY: Oxford University Press, 2008.
39. Long S. The tyranny of the customer and the cost of consumerism: an analysis using systems and psychoanalytic approaches to groups and society. Human Relations, 1999; 52: 723-743.
40. Dugay P, Salaman G. The cult[ure] of the customer. Journal of Management Studies, 1992; 29: 615-633.
41. Freeman S. Deliberative democracy: a sympathetic comment. Philosophy & Public Affairs, 2000; 29: 371-418.
42. Barbot J. How to build an "active" patient? The work of AIDS associations in France. Social Science & Medicine, 2006; 62: 538-551.
43. Rabeharisoa V, Moreira T, Akrich M. Evidence-Based Activism: Patients' Organisations, Users' and Activist's Groups in Knowledge Society. CSI Working Papers Series. Paris: Centre de Sociologie de l'nnovation Mines Paris Tech, 2013.
44. Burls A, Caron L, de Langavant GC et al. Tackling ethical issues in health technology assessment: a proposed framework. International Journal of Technology Assessment in Health Care, 2011; 27: 230-237.
45. Hofmann B. Toward a procedure for integrating moral issues in health technology assessment. International Journal of Technology Assessment in Health Care, 2005; 21: 312-318.
46. Gagnon MP, Desmartis M, Lepage-Savary D et al. Introducing patients' and the public's perspectives to health technology assessment: a systematic review of international experiences. International Journal of Technology Assessment in Health Care, 2011; 27: 31-42.
47. Leys M. Health technology assessment: the contribution of qualitative research. International Journal of Technology Assessment in Health Care, 2003; 19: 317-329.
48. Messina J, Grainger DL. A pilot study to identify areas for further improvements in patient and public involvement in health technology assessments for medicines. Patient, 2012; 5: 199-211.
49. Oliver S, Milne R, Bradburn J et al. Involving consumers in a needs-led research programme: a pilot project. Health Expectations, 2001; 4: 18-28.
50. Royle J, Oliver S. Consumer involvement in the health technology assessment program. International Journal of Technology Assessment in Health Care, 2004; 20: 493-497.
51. Barnes M, Newman J, Knops A, Sullivan H. Constituting 'the public' in public participation. Public Administration, 2003; 81: 379-399.
52. Bulfone L, Younie S, Carter R. Health technology assessment: reflections from the Antipodes. Value Health, 2009; 12 (Suppl. 2): S28-S38.
53. Contandriopoulos D. A sociological perspective on public participation in health care. Social Science & Medicine, 2004; 58: 321-330.
54. Stronks K, Strijbis AM, Wendte JF, GunningSchepers LJ. Who should decide? Qualitative analysis of panel data from public, patients, healthcare professionals, and insurers on priorities in health care. British Medical Journal, 1997; 315: 92-96.
55. Hunter DJ. Rationing health care: the political perspective. British Medical Bulletin, 1995; 51: 876-884.
56. Giddens A. The Third Way and its Critics. Malden, MA: Polity Press, 2000.
57. Everingham C. Social Justice and the Politics of Community. Aldershot, Hants, UK, Burlington, VT: Ashgate, 2003.
58. Wait S, Nolte E. Public involvement policies in health: exploring their conceptual basis. Health Economics Policy Law, 2006; 1: 149-162.
59. Milewa T. Representation and legitimacy in health policy formulation at a national level: perspectives from a study of health technology eligibility procedures in the United Kingdom. Health Policy, 2008; 85: 356-362.
60. Martin GP. 'Ordinary people only': knowledge, representativeness, and the publics of public participation in healthcare. Sociology of Health & Illness, 2008; 30: 35-54.
61. World Health Organization (WHO). Declaration of Alma Ata. Alma Ata: International Conference on Primary Health Care, 1978: 3.
62. World Health Organization (WHO). Ottawa Charter for Health Promotion. First International Conference on Health Promotion. WHO, Ottawa, ON, 1986.
63. Street JM, Braunack-Mayer AJ, Facey K, Ashcroft RE, Hiller JE. Virtual community consultation? Using the literature and weblogs to link community perspectives and health technology assessment. Health Expectations, 2008; 11: 189-200.
64. Fair Work Commission. Glossary - Small Business Employer. Canberra, ACT: Fair Work Australia, 2012.
65. Lopes, Edilene, Carter, Drew, & Street, Jackie. Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia. Forthcoming.