Marta Millaret, Communication and Documentation Unit, Agència de Qualitat i Avaluació Sanitàries de Catalunya (AQuAS)
To continue the analysis of the participation of citizens in health policies, a careful and wise consideration of who participates, for what reasons and from which location, is required. Let’s go a little further: The 2012 report from the Belgian Health Care Knowledge Centre and the report from the Australian Commission on Safety and Quality in Healthcare, 2010, deal with these issues. An article published in “The Milbank Quarterly” magazine and another one published in the “Health Policy” journal also shed light and shadows on the issue. Let’s see it in terms of successes, benefits and risks.
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What are the successful experiences of participation?
The successful participation at the political level lays in the formation of alliances and the recognition of the intrinsic value of working together, especially when dealing with common issues such as the implementation of new laws or government policies. Unfortunately, there is little knowledge about the impact that the groups of patients and users ultimately have in the political process.
Among the strategies used by these groups when trying to influence policy decisions, include the construction of links with government members, active presence in the media and the development of influential policies aimed at patients, users, carers and professionals. When it comes to successfully influencing, three strong aspects stand out: experience; promoting intra and intergroup relationships and the promotion of political relationships.
Quality criteria for patient organizations have been progressively defined in recent years. These quality criteria refer to having a code of ethics and good practice, transparency in economic management, public disclosure of conflicts of interest and received funding, elaboration of annual reports of undertaken activities and public access to these reports, flexibility when it comes to joining into a common front as opposed to acting in a fragmented way and a clear definition of roles based on objectives and results.
What are the expected benefits of participation?
The benefits of participation in the field of health services are in principle, improving the quality of care, public debate and/or the legitimacy of decisions, representativeness and increased competition, promoting confidence in health services and addressing inequalities and opportunities at health care level when it comes to supporting acting at individual and community level.
What are the risks of participation?
The risks of participation are in the imbalance of power and the lack of willingness to share this power, inadequate human and financial resources to make participation really effective, the difficulty of finding adequate representation that expresses the collective views, the risk of exploitation of patients by another participant (here it’s easy to think in the interests of the pharmaceutical industry), the exercise of pressure from powerful groups and generation of new power imbalances.
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