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Project

ECPDC-study

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:

  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.

 

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.

 

ECPDC FINAL EVENT – PRELIMINARY AGENDA

Monday, October 30th, 2023

 

Time

Talk

 

14.00-14.05

Opening

Charité & EC

14.05-14.15

Address from Cancer Mission and European Health Data Space

Barbara Kerstiens (DG RTD),
Guillaume Byk (DG SANTE)

14.15-14.25

Patients’ and Survivors’ needs for an ECPDC

Gilliosa Spurrier-Bernard (Patient Organisation)

14.25-14.45

Concept 1: ECPDC Information Portal

Roland Eils 

14.45-15.10

Panel discussion with relevant stakeholders 

STC + guests 

 

·      What is a good ECPDC? Where is the need highest?

Penilla Gunther/ Christine Chomienne (MOC Board)

 

·      How could KCC contribute to ECPDC and vice versa?

Magdalena Stepien (KCC, DG JRC)

 

·      How could collaboration between different Cancer Information Services be deepened?

Susanne Weg-Remers (German Cancer Information Service)

 

·      Why we use what is there.

Harald Wagener

15.10-15.15

BREAK

 

15.15-15.35

Concept 2: ECPDC Personal Health Data Space

Harald Wagener

15.35-16.00

Panel discussion with relevant stakeholders

STC + guests 

 

·      Could ECPDC be foreseen as a use case of EHDS?

Guillaume Byk (DG SANTE)

 

·      How could MyHealth@EU and HealthData@EU interact with data access and data management in ECPDC?

Guillaume Byk (DG SANTE), Zoltan Lantos (PATHeD / POTENTIAL)

 

·      Patient Reported Outcome Measures (PROMs), Patient Reported Experience Measures (PREMs) and EHDS: Why are they useful for patients / survivors? How do they fit together?

Fabian Prasser (H2O), Jack Latteur (smartCARD)

 

 

·      What features would a safe community space within ECPDC need to help mitigating social isolation and discrimination?

Jack Latteur (smartCARD)

16.00-16.05

BREAK 

 

16.05-16.25

Concept 3: ECPDC Co-decision

Roland Eils

16.25-16.50

Panel discussion with relevant stakeholders 

STC + guests

 

·      How to achieve patient agency?

Gilliosa Spurrier-Bernard (PO)

 

 

·      Can we expect patients to making meaningful decisions on treatment?
If no, what is missing?

Jan-Willem van de Loo (DG RTD)

 

·      Are researchers even prepared to explain their research to patients in a useful way? How can we help them?

Benedikt Westphalen (MOC Board)

 

·      How can we make sure that research results contribute to the ECPDC info portal in a timely manner?

Salvador Capella (EOSC4Cancer)

16.50-17.00

Wrap-up

Roland Eils

 

 

 

 

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