ECPDC (European Cancer Patient Digital Centre)

Study providing an operational concept for a European Cancer Patient Digital Centre (ECPDC)

Duration of the project: December 2022 - August 2023

The overall goal of the Mission on Cancer and Europe’s Beating Cancer Plan includes a better quality of life for patients and their families living with, and after, cancer. The European Cancer Patient Digital Centre (ECPDC) will be created as a federated network of national nodes and an overarching umbrella node to enable the patient controlled voluntary exchange of patients’ and survivors’ health data in a standardised approach for primary, secondary and personal use. The ECPDC will be a one-stop agency that empowers patients to access, control and share their own health data, as well as finding information and support.

The information platform of the ECPDC will address relevant aspects along the patient journey, i.e. prevention, diagnosis, treatment, rehabilitation, follow-up care, re-entry into the working life, forwarding to social and legal advice, long-term effects etc. The main functions of an ECPDC are:

1. Enabling access to general and tailored information on treatment, care, outcome statistics, side-effects, late-effects and support
2. Providing patients and survivors with access to their own clinical data, enabling them to combine them with self-generated health data, manage and share their own data with healthcare professionals, family, friends, researchers
3. Offering a safe community space where patients and survivors can share self-generated health data such as patient related outomes (PROs) and patient related experiences (PREs). This includes secondary health data from personal devices such as smart watches
4. Facilitating patient agency to manage their data, to co-decide on their treatment and to participate in studies. Enabling patients and survivors to actively participate in Quality of Life Real World Evidence Research

In the ECPDC study an operational concept is developed that assesses the potential of utilizing existing and planned federated infrastructures at EU and Member States’ level to contribute to an ECPDC and provides a blueprint for the development and long term strategy around patient digital centres.

Report on the ECPDC Implementation Study Final Event

The ECPDC Implementation Study culminated in a Final Event, introducing a wide audience to the results of eight months of intense work. Read along to get a glimpse about the insights we gathered in this period from all kinds of stake holders: Cancer Survivors, Medical Practitioners, Researchers. You will learn about our Implementation Proposal for A Good ECPDC in a three-phase approach that will culminate in delivering the core requirements set forth by the Mission on Cancer: Access to General and Tailored Evidence backed Information, Access To Your Own Data, Sharing Data with Third Parties, Safe Community Spaces, and Active Participation in Research and Treatment decisions.

Here you can find the agenda of the final event und here the report.

ECPDC Implementation Short Summary

In the ECPDC Implementation Short Summary, we present a high level overview of our findings and recommendations developed during the project. We recommend it for readers who do not need to get into the technical details of our recommendations and want a quick introduction into the goals of a Good ECPDC.

Executive Summary of the ECPDC operational concept

The Executive Summary of the ECPDC operational concept has been published by the European Commission, Directorate-General for Research and Innovation:

https://data.europa.eu/doi/10.2777/78242

Contact: ecpdc@charite.de