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OP0276-PARE More participation, better health – promoting public involvement in health
  1. S Crisostomo1,
  2. M Santos1,
  3. M Serapioni2,
  4. AR Matos2,
  5. EF Mateus3,
  6. on behalf of MAIS PARTICIPAÇÃO, melhor saúde
  1. 1GAT - Grupo de Ativistas em Tratamentos, Lisboa
  2. 2Centro de Estudos Sociais da Universidade de Coimbra, Coimbra
  3. 3Liga Portuguesa Contra as Doenças Reumáticas, Lisboa, Portugal

Abstract

Background In Portugal, the National Health Plan for 2012–2016 (1) and its extension to 2020 (2) consider citizenship-based strategies, including the involvement of patients/citizens and their representatives, as a key strategic axis to maximize health gains. However, actual policy initiatives and concrete actions have been limited to a couple initiatives without significant patient or public involvement. On the other side, several patient and citizen organizations (3–6) have been advocating for increased and meaningful involvement in health decision-making.

Objectives To develop a Charter for Public Involvement in Health that is widely accepted and recognized by health stakeholders.

Methods A working group was established with representatives from 13 patient organizations, 1 consumer organization and a research centre. A participatory action research methodology was used. The draft Charter was circulated for review and signature amongst more than 200 non-for-profit health-related organizations and over 50 key individuals publicly renowned for their work in health or public participation. The final version of the Charter was discussed with political and health stakeholders in a Forum held at the Portuguese parliament.

Results A Charter for Public Involvement in Health, including the principles, scope, guidelines and means of participation was developed. In January 2017, 30 individuals (former and current political decision-makers, health care professionals, researchers and patients) and more than 82 non-for-profit health-related organizations (the majority being Portuguese disease-specific patient organizations) had signed the Charter. The conclusions of the Forum show that the Charter was recognized as a very important initiative to promote public involvement in health in Portugal. Challenges and barriers to further advancing patient and public engagement were also identified (e.g. political will, recognitions of patients as partners, patient empowerment, capacity-building, etc.). The Charter and the Forum were covered in the media and follow-up initiatives with health care professionals and hospital administrators are ongoing.

Conclusions A patient-led Charter, developed by patient and consumer representatives, in collaboration with academia, and the public discussion with other health care stakeholders have proven successful to put public participation in the political and health care agenda.

References

  1. Direção-Geral da Saúde – Ministério da Saúde. Plano Nacional de Saúde 2012–2016. Lisboa, Portugal; 2012.

  2. Direção-Geral da Saúde – Ministério da Saúde. Plano Nacional de Saúde – Revisão e Extensão a 2020. Lisboa, Portugal; 2015.

  3. European Patients Forum. The Value+ Policy Recommendations: Patient Involvement in Health Programmes and Policy [Internet]. Available from: http://www.eu-patient.eu/globalassets/projects/valueplus/doc_epf_policyrec.pdf.

  4. European Patients Forum. Patient Empowerment Campaign [Internet]. Available from: http://www.eu-patient.eu/campaign/PatientsprescribE/.

  5. International Alliance of Patients' Organisations. Policy statement. Patient Involvement [Internet]. 2005. Available from: http://iapo.org.uk/sites/default/filesfiles/IAPO Policy Statement on Patient Involvement.pdf.

  6. Terzi A. The patients' involvement in health policies in Europe. Roma; 2013.

References

Disclosure of Interest S. Crisostomo Grant/research support from: Abbvie, Brustol-Meyers Squibb, Janssen, GSK, Pfizer, Roche and ViiV, M. Santos Grant/research support from: Abbvie, Brustol-Meyers Squibb, Janssen, GSK, Pfizer, Roche and ViiV, M. Serapioni: None declared, A. Matos: None declared, E. Mateus: None declared

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