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Patients need to be at the centre of digital transformation of health and care

On 25 April, the European Commission presented its Communication on Digital Transformation of Health and Care in the Digital Single Market. With this Communication the European Commission sets out measures to make it possible for citizens to access and share health data safely. It puts forward actions to pool data across Europe to boost research and spur the development of personalised medicine. It also presents new ways to promote the scaling up of digitally-enabled patient-centred care models.

The Communication shows investment and coordination is needed both at European and national levels to implement the right solutions that will benefit patients. 

The three pillars are all relevant to EPF’s vision of digital health, including patient-driven digital healthcare solutions and services; patients’ access to their own health data; and effective and ethical sharing of and (re)use of health data. We are pleased that patient-centredness and patient involvement are addressed in all areas of the Communication.

Giving citizens better access to their health data, everywhere in the EU

Currently, patients are not routinely able to access their health records; often, access is not easy, timely, or free. Use of medical jargon can be a barrier to understanding. We therefore welcome the recognition that “citizens have the right to access and share their health data”, as well as all the current issues regarding accessibility and interoperability as well as the steps the Communication outlines to tackle those problems. EPF stresses that access to one’s own health information in an understandable language is a basic patient’s right and a crucial precondition to patient empowerment, shared decision-making and truly collaborative care. Solutions exist to enable patients not only to access but also to add their own comments and observations to their health records; implementing good practices in this area should be a focus for the Commission and Member States.

Use digital services for citizen empowerment and person-centred care

Patient-centeredness is a core component of high-quality healthcare. Digital health can enable care to be structured around a person’s needs and preferences, improve the coordination of care and have more effective exchange of information between care professionals and patients, and the actions referred to by the European Commission in this context are strongly encouraged and supported. EPF believes that truly integrated care requires recognition that the patient is part of the healthcare team, and therefore welcomes the emphasis on “integration and coordination of services along the continuum of care” that the Communication calls for.

Connect and share health data for research, faster diagnosis and better health outcomes

The advancement of research, faster diagnosis, and ensuring of better outcomes are essential for patients, and it is clear that this is a priority for the Commission. Patients want healthcare systems that address the outcomes that matter to them; systematic collection and use of data such as patient-prioritised clinical and quality-of-life outcomes will be of vital importance. EPF therefore calls for a stronger role of patient involvement in setting the priorities of research activities.

Patients are usually willing to share their data as long as appropriate safeguards are in place, an area where the entry into application of the General Data Protection Regulation will play a significant role. To build trust, protection of personal data must be ensured, and its use must not result in any discrimination on the grounds of health status. Patients should also have a say in how their data is shared and used, being considered co-owners of their data. Appropriate informed consent mechanisms and embedding patient involvement in data governance and development of good practice guidelines will be key. We welcome the fact that cybersecurity is addressed in a cross-cutting way in the Communication, as this is an important area of vulnerability for patients who rely on secure transfers of very personal data. Data security therefore must be built in to all data-sharing systems.

A holistic patient perspective to digital health

Building on our long-standing engagement in eHealth, we are launching an internal working group with 9 patient representatives from EPF members and 3 external experts that will help drive forward a patient-centred vision of digital health.

The working group will meet in the coming weeks and one of its first tasks will be undertaking a thorough analysis of the Commission’s communication and proposing patient-centred principles for taking digital health forward. Furthermore, the working group will also work on a survey for patient organisation on electronic health records.