ArticleInternational journal of health policy and management2018
Assessing Patient Organization Participation in Health Policy: A Comparative Study in France and Italy.
Article in International journal of health policy and management, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis.Annals of the rheumatic diseases · 2021Guideline
- Promoting Patient Safety Through Patient Engagement at the Organisational Level: A Delphi-Based Needs Assessment Among Patient and Family Advisory Councils.Health expectations : an international journal of public participation in health care and health policy · 2025Trial
- No time to wait: resilience as a cornerstone for primary health care across Latin America and the Caribbean, a World Bank-PAHO Lancet Regional Health Americas Commission.Lancet regional health. Americas · 2025Review
- Youth patient and public involvement in health research in the Netherlands: experiences from a multi-stakeholder interview study.Research involvement and engagement · 2025Article
- Digital Transformation in Patient Organizations: Interview and Focus Group Study.Journal of medical Internet research · 2025Article
- Routes of Well-Being, Spiritual Harmony and Recovery in Mental Health: The Community as a Policy-Maker.International journal of health policy and management · 2025Article
- Chronically ill patients' perspectives on support services and activities of patient organizations.Israel journal of health policy research · 2024Article
- LDL-C: The Only Causal Risk Factor for ASCVD. Why Is It Still Overlooked and Underestimated?Current atherosclerosis reports · 2022Review
- Editorial: Health care financing and affordability in the emerging global markets, Volume II.Frontiers in public health · 2022Article
- 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
- Italian Version of the Pittsburgh Rehabilitation Participation Scale: Psychometric Analysis of Validity and Reliability.Brain sciences · 2021Article
- Developing a Shared Decision-Making Model for Diabetic Patients: A Qualitative Study.Galen medical journal · 2021Article
- Adherence to safety barriers in medication administration: patients' perception.Revista latino-americana de enfermagem · 2021Article
- Public engagement in the development of the National Health Insurance: a study involving patients from a central hospital in South Africa.BMC public health · 2020Article
- The progress of, challenges faced by, and future of rare disease patient organizations in China.Intractable & rare diseases research · 2019Article
- Stakeholder opinions on value in healthcare.European journal of hospital pharmacy : science and practice · 2019Article
- 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
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEven 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.
methodsA 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).
resultsFindings 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.
conclusionIn 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.
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