SP0082 How a user-led organisation for rmds enables citizen participation in portugal
Authors: E.F. Mateus
Journal: Annals of the Rheumatic Diseases (2018)

<h3></h3> One of the first challenges faced by patients' organisations may be to become a user-led organisation. In Portugal, for instance, there is still a strong culture of paternalistic relationship between doctors and patients, which can be a barrier when it comes to recognising leadership skills in a patient. This means that achieving a user-led model within the organisation depends on a) at least one person (patient or carer) feeling able to come forward and assume the leadership, b) this person's ability to gather more peers for the governing bodies, and c) that this team is accepted by the members of the organisation who are used to the paternalistic model. The important role of PARE and EULAR in providing tools and opportunities for developing skills for the empowerment of patients in advocacy, lobbying and as research partners, will be addressed in this lecture, since it can contribute to overcome some of the identified barriers. Another challenge may be that the desirable concept of patients' organisations as user-led organisations should be duly recognised, for their acknowledgement as stakeholders in the decision-making processes, representing the people affected by those processes. In Portugal, although the National Health Plan for 2012–2016 and its extension to 2020 considers citizenship-based strategies, the predicted involvement of patients/citizens and their representatives, as a key strategic axis to maximise health gains, had been limited to a couple initiatives without significant patient or public. Several patient and citizen organisations have been advocating for increased and meaningful involvement in health decision-making. In 2015, a working group was established with representatives from 13 patient organisations (including the Portuguese League Against Rheumatic Diseases – LPCDR), one consumer organisation and a research centre. The main objective was to develop a Charter for Public Involvement in Health that could be widely accepted and recognised by health stakeholders. However, the group also felt the need to define a consensus on Eligibility Criteria for the Representation of People with or without Disease in Health Decision-Making in Portugal. The final version of the Charter was discussed with political and health stakeholders in a Forum held at the Portuguese parliament that count about 150 participants. The document will now be presented for a legislative procedure in Portugal and it has been accepted in the public consultation on information to be considered during the preparation of the draft guidelines on the effective implementation of the right to participate in public affairs by the Office of the United Nations High Commissioner for Human Rights (OHCHR). This lecture will also focus on lobbying with several tools, from EULAR EU Affairs, Stene competition, PARE conferences and engagement programme, to patients' organisations networks, as a process for a user-led organisation to be acknowledged as such. The final challenge to be addressed will be the need to empower the citizens' involvement, through education, training and networking for patient advocacy, patients' involvement on health policy decision-making processes and on research. Several empowerment tools to help applying the «users'» arguments and getting involved in multiple areas, to improve access to care, social protection, sustainability, citizens' rights and patients' quality of life will be presented. This lecture aims to address some strategies, sharing the Portuguese League Against Rheumatic Diseases (LPCDR) experience on engaging the «users», changing mindsets and tackling the citizen participation of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Portugal. <h3>Disclosure of Interest</h3> None declared