Marta Millaret, Communication and Documentation Unit, Agència de Qualitat i Avaluació Sanitàries de Catalunya (AQuAS)
Beyond the cliché that says that participation is the important thing, the actual times suggest a thorough discussion of the issues, the controversies and the challenges that new participatory models with the promise of participation on the horizon, is on the table in many different areas, not only health.
What’s involved in participation?
It was 1969, when, Arnstein presented eight levels of participation, from low to high in the article “A ladder of citizen participation”.
Reference: Vancouver Community Network
According to him, participation was understood as the involvement of individuals in decisions that affect them and the effects of this participation can range from information (completely passive) through consultation to participation in decision-making (where participation is really effective). We found a good overview of Arnstein’s scale in the Canadian paper “The Citizen’s Handbook: A Practical Assistance for Those Who Want to Make a Difference”.
But let’s focus on health, and more specifically, on participation and health policy. The approach presented in the RAND Europe 2010 report on models of participation of patients and citizens in health policies is interesting.
Currently, the move from a paternalistic care model towards a more participatory model centred on the rights and duties of patients, reported a significant change in public health policy and, precisely in this context, it’s essential not to confuse the terms of information, consultation and participation, while an understanding of how participation ends up integrated into the decision space where participation was planned, is paramount. One has to explain very well before and after, how participation occurs, that is for good outcomes there ought to be a return of this participation and this return must be public.
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A lot of the literature refers to the public, citizens, consumers or users rather than patients. Each of these concepts involves a series of conditions and interests. For example, in the distinction between a patient and a health care consumer, the concept of “patient” has often been associated with a more passive component while the concept of “consumer” with a more active nuance of market and choice. In our case, in the context of a public financing system with progressive taxation, the main shareholders are the taxpayers from their different positions.
Why is there so much talk about participation right now?
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New technologies, technological changes and styles of relationship between individuals and organizations have led to the appearance of new opportunities for communication, knowledge and debate both from a welfare point of view and from a non-assistance perspective. We understand these technological and relational changes as potential facilitators of participatory processes.
What purpose of participation for those involved?
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The objectives of participation are diverse and can range from a sense of community responsibility up to a vested interest or may be a combination of both. The same individual can have different roles at different times; everyone can be patient and health service user.
In short, thinking of participation is to think of overlapping of roles and concepts certain confusion and related interests, easy to understand but worth keeping in mind at all times on a global, community and personal level. Health literacy and transparency policies should consider all these levels.
What is the aim of participation?
Based on the evidence provided, we pose three questions: what is being done, what can be done and what ought to be done with the knowledge derived from participation? We start here.