Health democracy in Europe: Cancer patient organization participation in health policy

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.

Indices and Indicators Developed to Evaluate the “Strengthening Community Actions” Mechanism of the Ottawa Charter for Health Promotion: A Scoping Review

“…72 “Health democracy” was another index that was measured in two studies. In both studies, the index was clearly described and measured to assess the degree and the impact of patients’ organization participation in health policy decision-making 80,81 (Supplementary material—part 3). To measure the index, none of the studies validated the measurement tools before use.…”

Cancer patients’ organisation participation in heath policy decision-making: a snapshot/cluster analysis of the EU-28 countries

“…Therefore, one should investigate further what happens in these countries and endeavour to identify the determinants of impactful participation overall. 24 …”

Chilean experience with national cancer plan and law: a cooperative bridge between the civil society and the government.

“…In countries that are moving towards more sustainable economies, non-governmental organisations (NGOs) and patient groups, as representatives of civil society, have held a crucial role in the construction and implementation of different health-associated laws and strategies. In Chile, patients are more aware of their rights and duties (7) and are moving forward to an active role in health decisions, promoting the patient perspective and transforming the health services into a "patient-centred care" health service (8)(9)(10)(11). Several social movements, NGOs and patient associations have claimed to increase the coverage for cancer and other diseases, provide more healthcare specialists, decentralisation of their services, waiting-lists reduction, and expand the expenditure on public health, which has resulted in two crucial laws (Ricarte Soto and the National Cancer Law).…”