ECPDC (European Cancer Patient Digital Centre)

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

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:

Enabling access to general and tailored information on treatment, care, outcome statistics, side-effects, late-effects and support
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
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
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.

The European Cancer Patient Digital Centre (ECPDC) study will conclude with a final event in which we propose an outline our suggestions, how an ECPDC could become reality. Results and implementation ideas will be presented and discussed with different relevant stakeholders.

The meeting will be held online on Monday, October 30^th 2023, from 2:00 pm to 5:00 pm.

Please contact ecpdc@charite.de to sign up.

EUROPEAN CANCER PATIENT DIGITAL CENTRE (ECPDC) FINAL EVENT PRELIMINARY AGENDA Monday, October 30^th 2023
Time	Talk
14.00-14.05	Welcome and introduction
14.05-14.15	Address from Cancer Mission and EU Beating Cancer Plan
14.15-14.25	Patients’ and Survivors’ needs for an ECPDC
14.25-14.45	Concept 1: ECPDC Information Portal
14.45-15.10	Panel discussion with relevant stakeholders
	What is a good ECPDC? Where is the need highest?
	How could KCC contribute to ECPDC and vice versa?
	How could collaboration between different Cancer Information Services be deepened? Why we use what is there?
15.10-15.15	BREAK
15.15-15.35	Concept 2: ECPDC Personal Health Data Space
15.35-16.00	Panel discussion with relevant stakeholders
	Could ECPDC be foreseen as a use case of EHDS?
	How could MyHealth@EU and HealthData@EU interact with data access and data management in ECPDC?
	Patient Reported Outcome Measures (PROMs), Patient Reported Experience Measures (PREMs) and EHDS: Why are they useful for patients / survivors? How do they fit together? What features would a safe community space within ECPDC need to help mitigating social isolation and discrimination?
16.00-16.05	BREAK
16.05-16.25	Concept 3: ECPDC Co-decision
16.25-16.50	Panel discussion with relevant stakeholders
	How to achieve patient agency?
	Can we expect patients to making meaningful decisions on treatment? If no, what is missing?
	Are researchers even prepared to explain their research to patients in a useful way? How can we help them? How can we make sure that research results contribute to the ECPDC info portal in a timely manner?
16.50-17.00	Wrap-up