What matters to patients

9 October 2018 | EPF Offices, Chaussee d’Etterbeek 180, 1040 Brussels

Our Manifesto calls on the political leaders of the EU, Members of the European Parliament and the future Commission, to ensure health is an EU policy priority and that patients’ rights are implemented across the EU, by taking concrete action on the issues that our members say matter most to patients

What matters to patients. Our five priorities:

Accessing the healthcare we need with no discrimination

Being empowered

Driving the development of digital health

Being a partner in driving better research

Helping make better health policy

Accessing the healthcare we need with no discrimination

“For a prosperous, inclusive and fair Europe, everyone, everywhere must have affordable access to the healthcare and support/social care they need.”

Healthier people contribute to economic growth and wealth. But even those who are not “healthy” have something to contribute to society. Patients are able to reach their individual potential for health and well-being when they have timely and affordable access to the full spectrum of care and services, based on need not means.

Equitable access boosts growth and contributes to a society that is productive, cohesive and inclusive.

Equitable access requires political and financial investment. It is also in itself an investment in the whole of society.

Being empowered

“All patients should have the right to define their own goals and participate as equal partners in care, supported by a new European charter of patients’ rights.”

Only patients know what matters to them most in the management of their health condition. Every patient across the EU deserves to benefit from empowering care practices and a culture of partnership, including shared decision-making and self-care support.

Different levels of empowerment depending on where you live are a specific inequality in the quality of care.

The EU must address this by actively promoting patient empowerment so that all patients everywhere have care that is person-centred and based on the same fundamental patients’ rights.

We want the EU to adopt a new, comprehensive and up-to-date European Charter of patients’ rights to bring the currently fragmented rights together in one document. Our pan-European patient community is ready to lead on this task.

Driving the development of digital health

“Digital technologies must be start from patients’ priorities and be co-developed with patients to bring real value.”

The purpose of digitalising healthcare is not only to ensure better quality, safety and sustainability for European health systems – but also to make care more person-centred. Patients are the owners of their health data. They should be able to freely and easily access all their information as well as decide who to share it with and on what conditions.

Electronic health records should not only be shared with patients. They should also be interactive, so that patients can contribute their own experience and knowledge. Access to safe and high-quality digital tools must be ensured across the EU.

Digital health literacy must be prioritised to really enable patients and citizens to get meaningfully involved in the digitisation process.

Being a partner in driving better research

“Patients’ priorities must drive research, with patients as equal and fully-resourced partners.”

To deliver high value, sustainable solutions, healthcare systems must be driven by patients’ needs and priorities. Meaningful patient involvement in research is a moral imperative – because research directly impact patients’ lives. It is also a practical imperative – because a meaningful definition of “added value” is only possible with patients.

More research needs to be directed towards non-pharmacological issues, such as patient-centred healthcare models, in order to inform policy and practice. The EU should adopt a coherent framework for involving patients meaningfully in all EU-funded research, working with patient organisations and compensating their expertise in EU-funded projects.

Publicly funded research also needs to be fully transparent on its results and data to reduce duplication and waste in research and produce better quality results for patients.

Helping make better health policy

“Patients’ experience and expertise will make health policy throughout Europe more effective, efficient and equitable. Patient organisations’ contribution to health policy should be valued and resourced.”

The EU Health Programme recognises the centrality of the patient perspective in health policy. It states that healthcare practices should be informed by feedback from and interaction with patients.

However, currently that is far from being the reality.

Patient organisations are a vital part of civil society. They bring a unique perspective of patients, which is an undervalued and underused resource in health systems. Patients should be represented in all health decision-making bodies, both at EU and national levels.

No health policy decisions should be made without the participation of patients’ representative organisations.

Most patient organisations function with minimal budgets and mostly voluntary staff. To really enable them to play their health policy role effectively, they need to be resourced through sustainable, ethical and diversified funding from EU and national sources.

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European Patients’ Forum

  Chaussée d’Etterbeek 180, 1040 Brussels

   + 32 2 280 23 34

   www.eu-patient.eu

A campaign of the European Patients’ Forum. Particular thanks to MSD Europe Inc and Abbvie SA, Amgen (Europe) GmbH, Bristol-Myers Squibb, Celgene International II Sarl, CSL Behring, Edwards Lifesciences SA, Lilly SA Eli Lilly Benelux, The European Nutrition for Health Alliance, Gilead Sciences Europe Ltd., Grunenthal GmbH, GlaxoSmithKlein Services Unlimited, Janssen Pharmaceutica NV, Medicines for Europe AISBL, Novartis Pharma AG, Novartis Group, Sandoz International GmbH, Pfizer Inc., F. Hoffman-La Roche Ltd., Sanofi-Aventis Groupe, Servier Monde, Shire International GmbH, Takeda Pharmaceuticals International AG, Teva Pharmaceuticals, UCB, Vertex Pharmaceuticals (Europe)Ltd.