Making empowerment a reality: Patients as partners

In a nutshell: The European Patients’ Forum (EPF) launched its Patient Empowerment campaign in May 2015. At the closing ceremony on June 22nd, 2016 at the European Parliament in Brussels, EPF presented the Roadmap for action, a policy tool to help stakeholders and policy-makers to move towards a coherent EU strategy on Patient Empowerment.

Patient empowerment is at the root of the European Patients’ Forum’s vision and mission (see also: Patient Empowerment: selbstbestimmt leben). The aim is to support policies and programmes that enable patients to take their place in society as equal citizens. EPF promotes collective involvement of patients at all levels of health policy to develop patient-centred health systems. As such, empowerment is embedded in all the policy work: from information and health literacy to safety and quality of healthcare, through to patients’ meaningful participation in research and EPF’s work in eHealth and mHealth (see also: EPF’s work in different policy areas)

Following a decision by its members to set patient empowerment as a key thematic priority, EPF launched a one-year Patient Empowerment Campaign in 2015, building on the previous year’s Manifesto for the European Parliament elections: «Empowered patients are an asset to society».

The five «E» of Patient Empowerment

The aim of this new campaign was to promote the development and implementation of policies empowering patients in Europe, so they can be involved in the decision-making and management of their condition. «Patients prescribe E5 for sustainable health systems» was the tagline of the EPF campaign.

The five «E» of Empowerment are education, expertise, equality, experience and engagement. It demonstrates that patients are active people who can, if supported and according to their individual capabilities and situation, make a positive difference to the sustainability of healthcare systems.

The five «E» of Patient Empowerment
The five «E» of Patient Empowerment

Empowerment to patients!

On May 20th – 21st, 2015 EPF officially kicked-off the Patient Empowerment Campaign with a conference involving EPF’s members and stakeholders. The main objectives of the conference were to 1) explore the concept of empowerment and to 2) seek existing good practices, challenges and pitfalls related to empowerment from the perspectives of different stakeholders.
The conference succeeded in gathering many powerful and insightful contributions that teased out the various threads of patient empowerment: patient involvement, health literacy, self-management and shared decision-making. From there, all that was needed was more coherence and more political commitment at all levels to really make it work for everybody.

After the kick-off conference, patient organisations and other stakeholders embraced the campaign and spread the message in up to 32 events in 11 countries. EPF and other supporters of the campaign also helped to raise awareness about patient empowerment with publications in different media. In total, the EPF campaign was mentioned in 35 articles/publications both in national and European media. Regarding dissemination, online activities were crucial to keep the community posted and engaged. Through different tools and platforms, the campaign reached a significant number of people all around the EU who showed their commitment by signing the pledge, using the hashtag #PatientsprescribE or sharing the leaflets.

Patient Empowerment Campaign_socialmedia

 

Empowerment goes European Parliament

On a more political level, another strategy was to approach policy-makers, in particular Members of the European Parliament. In this regard, a delegation of EPF (accompanied by a real patient) managed to meet 12 MEPs from different countries and parties. In these individual meetings, EPF presented the concept of patient empowerment, updated on the campaign and asked for support in including the concept in the future shaping of the EU health policy. The result of the round of meetings was fairly positive, as most of the MEPs fully embraced EPF’s advocacy work. It also helped to increase visibility and create stronger links. After one year advocating for patient empowerment, EPF decided to organise a high-level roundtable to share the results of the campaign and gather stakeholders and policy makers to discuss further steps on how to take patient empowerment to the next level.

The closing event of the campaign took place on June 22nd, 2016 at the European Parliament in Brussels, and was co-hosted by three MEPs: Andrey Kovatchev (EPP, Bulgaria), Karin Kadenbach (S&D, Austria) and Roberta Metsola (EPP, Malta). A high-level policy roundtable under the title «Making Empowerment a Reality: Patients as Partners» congregated around 70 participants in a productive discussion. Health professionals, policy makers and patients agreed on the need of empowering patients to build a better and more sustainable healthcare system. Panellists and participants debated different approaches of empowerment – such as access to quality healthcare for all, health literacy and patient education – and shared perspectives from their different backgrounds.

The highlight of the event was the official presentation of the two campaign policy instruments: the Charter on Patient Empowerment and the Roadmap for Action.

Charter on Patient Empowerment

The Charter on Patient Empowerment encapsulates the «cardinal rules» of patient empowerment and outlines what really matters to patients. Co-developed with EPF members, the Charter defines the fundamental principles of patient empowerment from the patients’ perspective. The document aims to be «owned» by patient communities across the EU, and supported by other stakeholders to ensure concrete commitment from the different actors. The Charter can be used as an advocacy and political tool to promote action and culture change «on the ground» in the healthcare environment, or at policy level. It is  available in several languages.

Charter on Patient Empowerment

 

The Roadmap for Action

In order to apply the Charter’s principles in policy and practice, the Roadmap for action assigns them to eight priority action areas, which need to be referred to on different levels.

EPF Roadmap for Action

 

The Roadmap is the result of the EMPATHIE study, which recommends the development of a European strategy on patient empowerment to inform policy, practice and further research. It should be used to identify key areas for such a strategy. The priority areas and actions in this Roadmap are highly complementary and identify multiple paths to achieve high-quality, patient-centred, participatory and sustainable European health systems.

The Roadmap is therefore intended to provide direction and inspiration for action. EPF has not indicated any specific timelines in order to take on a long-term view. EPF has also not provided specific instructions on who should take which action, based on the belief that the engagement of a wide range of stakeholders – patients, policymakers, different health/social care professionals, and sometimes commercial actors – is required in each area. There is a need to develop a new, more collaborative mind-set to cut through existing «silos» and develop solutions together – always with patients and their representative organisations as partners. Many of the key areas identified in the Roadmap contain existing examples of good practice and innovation. EPF will continue to collect these good practices and case studies, available at a later stage.

Even after the official closing of the campaign, EPF will continue advocating for patient empowerment and will make the best use of these tools to take it to the next level.

»We need a joint strategy on Patient Empowerment, led by the EU Commission, which involves stakeholders and Members States.« Nicola Bedlington, EPF Secretary General

Your Feedback and Thoughts? Let’s discuss!

  • What does patient empowerment mean to you? Have you ever experienced it? If so, what was its impact on your life?
  • In your opinion, how can patient empowerment be promoted by the different stakeholders (healthcare professionals, pharma industry, patient organisations)?
  • What do you expect from European leaders in this regard?

Further information

A full report and pictures of the closing event are available on EPF’s website.

 

 

Sara Gayarre

Communications Assistant, European Patients' Forum

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