1Faculty of Social and Political Sciences, University of Peloponnese, Corinth, Greece
2Community Mental Health Centre, University Mental Health Research Institute, Athens, Greece
3Department of Surgery, University of Rome Tor Vergata, Rome, Italy
4Europa Donna France, Paris, France
5Bulgarian National Patients’ Organization, Sofia, Bulgaria
6FSNB Health & Care, Paris, France
Background Even though there are many patient organizations across Europe, their role in impacting health policy decisions and reforms has not been well documented. In line with this, the present study endeavours to fill this gap in the international literature. To this end, it aims to validate further a previously developed instrument (the Health Democracy Index - HDI) measuring patient organization participation in health policy decision-making. In addition, by utilizing this tool, it aims to provide a snapshot of the degree and impact of cancer patient organization (CPO) participation in Italy and France.
Methods A convenient sample of 188 members of CPOs participated in the study (95 respondents from 10 CPOs in Italy and 93 from 12 CPOs in France). Participants completed online a self-reported questionnaire, encompassing the 9-item index and questions enquiring about the type and impact of participation in various facets of health policy decisionmaking. The psychometric properties of the scale were explored by performing factor analysis (construct validity) and by computing Cronbach α (internal consistency).
Results Findings indicate that the index has good internal consistency and the construct it taps is unidimensional. The degree and impact of CPO participation in health policy decision-making were found to be low in both countries; however in Italy they were comparatively lower than in France.
Conclusion In conclusion, the HDI can be effectively used in international policy and research contexts. CPOs participation is low in Italy and France and concerted efforts should be made on upgrading their role in health policy decision-making.
Coulter A, Parsons SJ. Where Are The Patients In Decision-Making About Their Own Care? Denmark: World Health Organization; 2008.
Souliotis K. Looking for democracy in health amidst the fiscal crisis: patient participation in health policy decision making. In: Souliotis K, ed. Democracy, Citizens and Health Policy: Participation in Decision Making, Lobbying and Patient Associations (in Greek). 1st ed. Athens Greece: Papazisis; 2016:23-51.
Souliotis K. The concept of Health Democracy: Documentation of a New Approach in Health Policy Decision Making. The Health Democracy Index. Paper presented at: 41 PanHellenic Medical Conference; 2015.
Van de Bovenkamp HM, Trappenburg MJ. Government Influence on Patient Organizations. Health Care Analysis. 2011;19(4):329-351. doi:10.1007/s10728-010-0155-7.
Ottawa Charter for Health Promotion. Ottawa, Canada: WHO; 1986.
Hunter DJ. Getting knowledge on 'wicked problems' in health promotion into action. In Clavier C, De Leeuw E, eds. Health Promotion and the Policy Process. Oxford: Oxford University Press;2013:131-153.
Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff. 2013;32(2):207-214. doi:10.1377/hlthaff.2012.1061
Conklin Α, Morris Ζ, Note Ε. Involving the Public in Healthcare Policy. An Update of the Research Evidence and Proposed Evaluation Framework. A Technical Report. Santa Monica; 2010.
Lenaghan J. Involving the public in rationing decisions. The experience of citizens juries. Health Policy. 1999;49(1-2):45-61. doi:10.1016/s0168-8510(99)00042-1
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
Höglund AT, Winblad U, Arnetz B, Arnetz JE. Patient participation during hospitalization for myocardial infarction: perceptions among patients and personnel. Scand J Caring Sci. 2010;24(3):482-489. doi:10.1111/j.1471-6712.2009.00738.x
Weingart SN, Zhu J, Chiappetta L, et al. Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care. 2011;23(3):269-277. doi:10.1093/intqhc/mzr002
Heisler M, Bouknight RR, Hayward RA, Smith DM, Kerr EA. The relative importance of physician communication, participatory decision making, and patient understanding in diabetes self-management. J Gen Intern Med. 2002;17(4):243-252. doi:10.1046/j.1525-1497.2002.10905.x
McCorkle R, Ercolano E, Lazenby M, et al. Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61(1):50-62. doi:10.3322/caac.20093
Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int. 2000;15(3):259-267. doi:10.1093/heapro/15.3.259
Hibbard J, Mahoney E, Stock R, Tusler M. Do Increases in Patient Activation Result in Improved Self-Management Behaviors? Health Serv Res. 2007;42(4):1443-1463. doi:10.1111/j.1475-6773.2006.00669.x
Sullivan M. The new subjective medicine: taking the patient's point of view on health care and health. Soc Sci Med. 2003;56(7):1595-1604. doi:10.1016/s0277-9536(02)00159-4
Bieber C, Müller K, Blumenstiel K, et al. Long-term effects of a shared decision-making intervention on physician–patient interaction and outcome in fibromyalgia. Patient Educ Couns. 2006;63(3):357-366. doi:10.1016/j.pec.2006.05.003
Elwyn G, Edwards A, Mowle S, et al. Measuring the involvement of patients in shared decision-making: a systematic review of instruments. Patient Educ Couns. 2001;43(1):5-22. doi:10.1016/s0738-3991(00)00149-x
van de Bovenkamp HM, Trappenburg MJ, Grit KJ. Patient participation in collective healthcare decision making: the Dutch model. Health Expect. 2010;13(1):73-85. doi:10.1111/j.1369-7625.2009.00567.x
Raingruber B. The Effectiveness of psychosocial interventions with cancer patients: an integrative review of the literature (2006–2011). ISRN Nurs. 2011;2011:638218. doi:10.5402/2011/638218
van Thiel G, Stolk P. Priority Medicines for Europe and the World. A Public Health Approach to Innovation. Update on 2004 Background Paper. Geneva: WHO; 2013.
INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh: INVOLVE; 2012.
Viergever R, Olifson S, Ghaffar A, Terry RF. A checklist for health research priority setting: nine common themes of good practice. Health Res Policy Syst. 2010;8:36.
Wood B. Patient Power? The Politics of Patients’ Associations in Britain and America. 1st ed. Buckingham: Open University Press; 2000.
Harrison S, Barnes M, Mort M. Praise and damnation: mental health user groups and the construction of organisational legitimacy. Public Policy Adm. 1997;12(2):4-16. doi:10.1177/095207679701200202
Baggott R, Allsop J, Jones K. Speaking for Patients and Carers: Health Consumer Groups and the Policy Process. 1st ed. Palgrave Macmillan; 2005.
Allsop J, Jones K, Baggott R. Health consumer groups in the UK: a new social movement? Sociol Health Illn. 2004;26(6):737-756. doi:10.1111/j.0141-9889.2004.00416.x
Jemal A, Center M, DeSantis C, Ward E. Global Patterns of Cancer Incidence and Mortality Rates and Trends. Cancer Epidemiol Biomarkers Prev. 2010;19(8):1893-1907. doi:10.1158/1055-9965.epi-10-0437
Hendren S, Chin N, Fisher S, et al. Patients’ barriers to receipt of cancer care, and factors associated with needing more assistance from a patient navigator. J Natl Med Assoc. 2011;103(8):701-710. doi:10.1016/s0027-9684(15)30409-0
Jemal A, Ward E, Wu X, Martin H, McLaughlin C, Thun M. Geographic patterns of prostate cancer mortality and variations in access to medical care in the United States. Cancer Epidemiol Biomarkers Prev. 2005;14(3):590-595. doi:10.1158/1055-9965.epi-04-0522
Souliotis K. The involvement of Patient Groups in health policy decision making: Pilot Study in Greece. Paper presented at: II Therapeutic Coalition Conference; 2015.
Thouvenin D. French Medical Malpractice Compensation since the Act of March 4, 2002: Liability Rules Combined with Indemnification Rules and Correlated with Several Kinds of Proceedings. Drexel Law Review. 2011;4(165):165-197.
Ferré FB, Valerio L, Longhi S, et al. Italy: Health System Review. Copenhagen, Denmark: World Health Organization; 2014.
Baggott R, Forster R. Health consumer and patients' organizations in Europe: towards a comparative analysis. Health Expect. 2008;11(1):85-94. doi:10.1111/j.1369-7625.2007.00472.x
WHO. Exploring Patient Participation in Reducing Health-Care-Related Safety Risks. Copenhagen, Denmark: WHO Regional Office for Europe; 2013.
Council of Europe. Recommendation on Patient Safety, Including the Prevention and Control of Healthcare Associated Infections. Brussels, Belgium: Council of the European Union; 2009.
WHO. Cross-Border Health Care in the European Union Mapping and Analysing Practices and Policies. Copenhagen, Denmark: World Health Organization on behalf of the European Observatory on Health Systems and Policies; 2011.
O'Connor A, Rostom A, Fiset V, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. Cochrane Database Syst Rev. 2003;2(CD001431). doi:10.1002/14651858.CD001431
Eliasoph H, Monaghan B, Beaudoin R, et al. "We are all in this together": integrated health service plans in Ontario. HCQ. 2007;10(3):82-87. doi:10.12927/hcq.2007.18938
Wiseman V, Mooney G, Berry G, Tang K. Involving the general public in priority setting: experiences from Australia. Soc Sci Med. 2003;56(5):1001-1012. doi:10.1016/s0277-9536(02)00091-6
Oliver S, Clarke-Jones L, Rees R, et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess. 2004;8(15):1-148. doi:10.3310/hta8150
Legare F, Stacey D, Forest PG. Shared decision-making in Canada: update, challenges and where next! Z Arztl Fortbild Qualitatssich. 2007;101(4):213-221. doi:10.1016/j.zgesun.2007.02.024
Goold SD, Biddle AK, Klipp G, Hall CN, Danis M. Choosing health plans all together: a deliberative exercise for allocating limited health care resources. J Health Polit Policy Law. 2005;30(4):563-602. doi:10.1215/03616878-30-4-563
Sheridan SL, Harris RP, Woolf SH. Shared decision making about screening and chemoprevention. Am J Prev Med. 2004;26(1):56-66. doi:10.1016/j.amepre.2003.09.011
Vega A. Healthcare democracy and society's challenges with regard to medicines (French). Soins. 2014;784:31-34.
National Institute for Health and Clinical Excellence. Patient and Public Involvement Policy. United Kingdom: NICE; 2016.
European Union. European Charter of Patients’ Rights. European Commission; 2002.
World Health Organization. The Ljubljana Charter on Reforming Health Care in Europe. Copenhagen: WHO; 1996.
Council of Europe. The Development of Structures for Citizen and Patient Participation in the Decision-Making Process Affecting Health Care. Strasbourg; 2000.