The European Patients’ Forum has set down ten fundamental principles it says should underpin practical measures to move from treating patients as passive recipients, to recognising their active involvement is a route to both improving the quality of care and promoting the sustainability of Europe’s health systems.
The EPF’s Charter on Patient Empowerment, launched at a high level policy round table in the European Parliament in Brussels last week, is intended to help patients become active participants in their care.
It is time for a shift from organising care around structures to organising it around patients, said Vytenis Andriukaitis, Commissioner for Health, in his opening speech. “To tackle the burden of chronic diseases, healthcare systems need to shift from organisation-centered to patient-centered healthcare,” he said. “I will continue to promote this necessary shift and assist the member states to change.”
Andruikaitis has personal experience from both ends of the system, both as a medical doctor, and recently, as a patient himself. He told the roundtable, “Patients are active people. They can, if supported according to their individual capabilities, make a difference to their health and well-being, as well as to the sustainability of healthcare systems.”
The charter was endorsed by Martin Seychell, Deputy Director General for Health at DG Sante, who said taking account of the patient perspective on care quality is, “A matter of sustainability of healthcare systems.”
Jurate Svarcaite, Secretary General of the Pharmaceutical Group of the European Union said the one-size-fits-all care currently provided is an obsolete approach. “Different patients have different needs,” she said.
EPF, an association of patients’ groups that represents 150 million patients across Europe, has drawn up the charter following a year-long campaign of engagement with stakeholders, to assess views on how to move empowerment on from rhetoric to reality.
Patient Experience
The starting point for EPF is that patients who have experience of living with chronic disease become experts in dealing with their conditions and all the surrounding issues. This expertise should be tapped and applied to improve service design, reduce waste and contribute to the sustainability of health care systems.
There is evidence that listening to patient preferences and involving them in decision-making leads to better health outcomes and also to lower costs. However, to date there has been little attempt to systematically capture these benefits. There is much talk about encouraging patients to become more involved in managing their own health but they are rarely supported to do that.
EPF recognises that moving from passive to empowered may be as challenging to patients as to healthcare professionals, and it aims to provide support to organisations across Europe that are seeking to advance the agenda. In particular, Nicola Bedlington, EPF’s Secretary General notes there is a need for capacity building to increase patients’ influence in central and eastern Europe.
Digital Health
Moves to empower patients go hand-in-hand with advances in the digital healthcare tools and devices that provide the means for patients to monitor their own health and report back to their carers.
Such devices also provide the real world evidence that is required to assess how drugs perform in the context of different national healthcare systems.
“Mobile devices, and eHealth in general, have the potential to empower citizens, to help them better manage their health and well-being by tracking their fitness and monitoring their daily parameters. They also help to improve the communication between healthcare professionals and patients,” Andruikaitis said.
Driving the uptake of digital health technologies will require time and effort on the part of both patients and healthcare providers, Seychell said. Doctors need training and patients must be prepared and ready to use these new tools.
Austrian MEP Karin Kadenbach of the S&D group, said improved health literacy should be a top priority in the implementation of patient-centred digital health. Without this, the potential for innovation in the organisation of healthcare would not be realised, she said.
A further concern is the protection of individual patient data. Although there is an undeniable need to take into account patient-reported experience and individual preferences in healthcare decision-making, there are fears about privacy invasion and the use of data in non-consented ways.
While saying that data can serve the rights of patients, Svarcaite warned appropriate safeguards must be in place to give patients the confidence to share their data in a way that contributes to research and improving the quality of healthcare services.
There is some way to go in successfully capturing patient-reported data and using it to inform new approaches to the delivery of healthcare. However, the consensus of the meeting was that moves to make patients more active participants in their own healthcare are gathering momentum.
The EPF Charter is here.
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