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:
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 30th 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 30th 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 |
|
|
|
|
|
|
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 |
|
|
|
|
|
|
16.00-16.05 |
BREAK |
16.05-16.25 |
Concept 3: ECPDC Co-decision |
16.25-16.50 |
Panel discussion with relevant stakeholders |
|
|
|
|
|
|
16.50-17.00 |
Wrap-up |
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