About seventy Portuguese patient and public health organisations and a number of individual key opinion leaders– including two former Portuguese Health Ministers – have signed a petition requesting more citizens’ involvement in the development of health policies.
The petition asking for the adoption of a “Charter for Public Participation in Health” was presented to the public at an open Conference held at the Portuguese National Assembly on Tuesday 18 October 2016.
“Our objective is for the Parliament to take over this Charter and promote citizens’ participation in health through legislation“, said Sofia Crisostomo from the patient organisation GAT, representing people affected by HIV and AIDS, leading the project.
From contributing to the national health plan to representation in advisory boards – 10 priorities for more participation
The document, elaborated within the project “More Participation, Better Health”, identifies ten areas where there are needs to be more patient participation, such as the elaboration of the national health plan. The Charter also demands a greater representation of patients and users in the advisory boards of the regional health authorities and health centres groupings (ACES) and national ethics councils. “The health centres groupings already foresee the participation of users in advisory boards, but it is residual. We want a better balance in terms of representation of users in the Boards of these health centres“, Sofia said, adding that the same applies to hospitals, where in most cases the users are left out.
Patients point out the absence of a collaboration culture as the main barrier to users’ involvement
The presentation of this petition was accompanied by the publication of the results of a survey on public participation in health decision-making carried out among more than 600 citizens and 78 patient organisations and other associations active in the field of health.
About half of the organisations believe they have no influence in health policy-making, and less than 10% report having been consulted by Members of the Parliament or by the parliamentary Commission on health. Finally, more than 80% of the organisations report that in the cases where there has been some kind of involvement, these contacts happened on the associations’ own initiative.
The absence of a collaboration culture between civil society organisations and public institutions, as well as the excess of bureaucratic procedures in the health system, are pointed as the main barriers to involvement in decision-making.
“Decision-makers need to realise that patient involvement is not a favour they are doing to civil society organisations, but a process through which they gain the insights of true health experts, the patients themselves.”, argued Camille Bullot from the European Patients’ Forum at the Conference.
The petition has already collected half of the 4000 signatures necessary for the Charter to be discussed in the plenary session of the Portuguese Parliament, the Assembleia da República.
Contact person:
Camille Bullot, Membership and Stakeholders Relationship Manager
