"European Citizens' rights: patients' involvement and Cross Border Care"
16th May 2013 – Brussels
The 2013 Conference promoted the involvement of citizens' and patients' organisations in health policies in Europe, both in general and in the implementation of the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare, which should be transposed in all EU Member States within 25 October this year.
The patients’ involvement on Health policies in Europe: the citizens voice in Cancer Care decision making process
Framework and rational
The patients' involvement and citizen participation are going to enter in the European Agenda of Health policy. Many studies have been promoted by scientists' society, private company, Public bodies, etc about the necessity of a citizens' engagement in the Health choices. The lack of financial resources and the economic crisis in one side and the growing of Health research and new requirements about diseases' treatments in the other side require different behaviors and innovative model of governance. Despite the studies and the widespread belief about citizens' engagement, there is not a systematic commitment on it at European and Member State level.
The commitment against unnecessary pain is going to enter in the European Agenda of Health policy. A lot of data have been collected by scientists' society, private companies and governments, etc. about the diffusion of chronic pain and its societal and economical impact. New laws, as the Italian one, have proposed innovative contents to put in practice.
At the same time the willing of patients' organizations to have an even more active role in the commitment for reducing pain and in the promotion of a new policy on pain relief is growing. Recently, it was founded a new coalition of patients' and citizens' organizations, named PAE (Pain Alliance Europe), with the mission to represent the point of view of patients in the European pain policies.
Cittadinanzattiva (Active Citizenship) and SiHTA (Italian Society of HTA)have signed an agreement for the promotion of a summer school for civic leaders HTA in November 2011. The agreement is focused on three shared issues: 1) the need to support the development of HTA as a tool of government qualified public spending in a context of strong reduction of resources, 2) the absence in Italy of the citizens' involvement in the processes of evaluation, and 3) the lack of civic leadership aware and sufficiently informed.
Cittadinanzattiva has a more than 30 year experience in the protection of citizens' rights in the health sector, which initiated with its Tribunale per i diritti del malato ("Tribunal for Patients' Rights" or TDM) in 1980 and was later strengthened through the Coordinamento nazionale Associazioni Malati Cronici (National Coordination Centre of Chronic Patients' Associations) in 1996.
Active Citizenship Network celebrated the 6th European Patients' Rights Day in Brussels, with a conference entitled "Active Ageing citizens at the center of EU health policy", last 15th and 16th of May 2012. The conference was fully focused on the European topic of the year “Active Ageing and Solidarity between Generations”. Insofar as the number of ageing citizens is rapidly increasing (Europeans aged 65+ is expected to increase by 45% between 2008 and 2030, and even further to over 30% of the population by 2060) the issues of their access to health care services and the respect of their rights as patients are becoming central and extremely challenging.
The objective of the conference was thus to demonstrate that part of the solution resides in a change of perspective vis-à-vis ageing citizens, from weak patients into "empowered users" of health care services, able to contribute to a better implementation of their rights. Best practices on Active Ageing citizens in health policies have been presented and discussed. The BP focused on what healthcare services, civic associations and governments are doing in this area to reveal the concrete benefits of this approach.
Putting Citizens at the center of Health Policy begins with guaranteeing patients rights are respected.
The reinforcement of Patients' rights will become effective only with the cooperation and commitment of all healthcare stakeholders in every EU country. It is thus essential to increase awareness regarding the importance of patients' rights and everyone's responsibilities in guaranteeing their respect.
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