ArticleHealth expectations : an international journal of public participation in health care and health policy2018
Health democracy in Europe: Cancer patient organization participation in health policy.
Article in Health expectations : an international journal of public participation in health care and health policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 17 citations in OpenAlex.
- Patient perspectives on the use of artificial intelligence to support treatment decision making in renal cancer: findings from the KATY project.BMC medical informatics and decision making · 2026Article
- Barriers and opportunities for participation in health policy decision-making by civil society groups organized for cancer in Chile: a qualitative study.Health research policy and systems · 2026Article
- Methods for Involving People With Dementia in Health Policy and Guideline Development: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient organisations' views, motivations and experiences on patient involvement in cancer research: a pilot study in Portugal.BMJ open · 2024Review
- Patient involvement at the managerial level: the effectiveness of a patient and family advisory council at a regional cancer centre in Sweden.BMC health services research · 2021Article
- The Precision Health and Everyday Democracy (PHED) Project: Protocol for a Transdisciplinary Collaboration on Health Equity and the Role of Health in Society.JMIR research protocols · 2020Article
- Shared decision-making in mental health care: have we overlooked the collective level?European archives of psychiatry and clinical neuroscience · 2019Article
- Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives.Journal of bioethical inquiry · 2018Article
- Cancer patients' organisation participation in heath policy decision-making: a snapshot/cluster analysis of the EU-28 countries.BMJ open · 2018Article
- Health democracy in Europe: Cancer patient organization participation in health policy.Health expectations : an international journal of public participation in health care and health policy · 2018Article
Corrections and comments
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Authors and funding
7 authors at 6 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient organization participation in health policy decision making is an understudied area of inquiry. A handful of qualitative studies have suggested that the growing number of patient organizations in Europe and their increasing involvement in policy issues do not result in high political effectiveness. However, existing research is largely country-specific.
objectiveTo examine the degree and impact of cancer patient organization (CPO) participation in health policy decision making in EU-28 and to identify their correlates.
methodsA total of 1266 members of CPOs participated in this study, recruited from a diversity of sources. CPO participation in health policy was assessed with the Health Democracy Index, a previously developed instrument measuring the degree and impact of patient organization participation in various realms of health policy. Additional questions collected information about participants' and the CPO's characteristics. Data were gleaned in the form of an online self-reported instrument.
resultsThe highest degree of CPO participation was observed with respect to hospital boards, reforms in health policy and ethics committees for clinical trials. On the contrary, the lowest was discerned with regard to panels in other important health-related organizations and in the Ministry of Health. The reverse pattern of results was observed concerning the Impact subscale. As regards the correlates of CPO participation, legislation bore the strongest association with the Degree subscale, while organizational factors emerged as the most important variables with regard to the Impact subscale.
conclusionsResearch findings indicate that a high degree of CPO participation does not necessarily ensure a high impact. Efforts to promote high and effective CPO participation should be geared towards the establishment of a health-care law based on patient rights as well as to the formation of coalitions among CPOs and the provision of training to its members.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.