Privacy and usability challenges in setting up a European digital platform for cancer patients

To improve the care and quality of life of people living with and after cancer, the European Commission is exploring the possibilities of setting up a European Cancer Patient Digital Centre (ECPDC). This digital platform aims to ensure that people who have (had) cancer can access, add and share their own health data and make them available for research, if they wish. A quick scan of relevant existing initiatives conducted by the EUHealthSupport Consortium, led by Nivel, provides valuable lessons for developing the ECPDC.

The European Cancer Patient Digital Centre (ECPCD) is a digital platform, which will be set up from the perspective and information needs of the patient. A great benefit of a European platform is that it will facilitate the international exchange of data for improving healthcare and healthcare research. Furthermore, cancer patients and survivors can easily come into contact with each other and can easily get invited for international research, which may be particularly relevant for people with rare cancers.

Learning from the features of existing digital platforms

In the quick scan we conducted, we analyzed six digital platforms in which patients with various conditions manage their own health data. The platforms contained several functions, such as a health passport, a knowledge centre, a connecting device with other patients and the ability to make data available for research. Examining these features provide valuable lessons for the design of the ECPDC.

Challenges concern privacy and usability

A technical challenge in developing the ECPDC is the secure handling and storage of large amounts of health data of various kinds and from different sources. Options to consider for the ECPDC are to keep data in its original place and only connect the different sources, and to develop technical solutions that can handle both structured and less structured data. Another challenge is to make the platform user-friendly, so that people of all ages, education levels and nationalities can easily access and manage their data. Therefore, cancer patients and survivors, healthcare providers, scientists and IT-specialists should be involved in setting up the ECPDC right from the start.

Next step: optimising national infrastructures and integrating them into a European network

The European Commission aims to support Member States in setting up good infrastructures at a national level if these are not present yet. Also the commission intends to facilitate the integration of these national structures into a European network.

About the study

An independent committee of international experts, the Cancer Mission Board, has recommended the development of a European digital platform for people who have (had) cancer: the European Cancer Patient Digital Centre (ECPDC). This recommendation has been adopted in the EU Mission on Cancer and the Europe's Beating Cancer Plan. The EUHealthSupport Consortium explored six existing digital platforms in which patients have access to and control over their own health data. In the EUHealthSupport Consortium, Nivel works together with European partner institutes to support the European Commission in various policy areas, including the implementation of the EU Mission on Cancer and the Europe’s Beating Cancer Plan.

This research project relates to Nivel's research program General Practice Care (lead by Joke Korevaar, PhD).