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WP4: Collaboration platform on

"Citizens' secure access to and sharing of health data"

21st of March 2019

The EC Communication on Digital Transformation of Health and Care (25 April 2018) defines three priority areas: (1) citizens’ secure access to and sharing of health data, (2) better data for use in research, personalised medicine and public health, and (3) digital tools for citizen empowerment.

Following the DigitalHealthEurope-Blueprint Workshop on 20. March which highlights key issues in all three priority areas, today’s workshop aims to provide further insight and facilitate discussion on the first priority area Citizens’ Secure Access to and Sharing of Health Data. Special emphasis is put on the importance of citizens’ digital health literacy and empowerment to facilitate their active engagement in citizen-centred health and care.

Data governance models will be investigated with a focus on citizen-controlled data governance and data donation. GDPR and legal implications of health data sharing will be explored.

Workshop Goals:

  • Concepts alignement: the use of concepts such as citizens’ access to health data, digital health literacy and patient empowerment; citizen-controlled data governance; GDPR and legal implications of health data sharing; secondary use of data and data donation.
  • Good practice examples, key issues and success factors in:
    • digital health literacy and citizen empowerment.
    • citizen-controlled data governance and data donation: GDPR and legal implications of health data sharing

Agenda

9:00 – 9:15

Arrival

9:15 - 9:40

Welcome

Goals of the Workshop and organization of the day

Henrique Martins (SPMS)

9:40 - 10:20

Outcomes of the DigitalHealthEurope-Blueprint Workshop

Use case aproach

Blueprint scenarios

Link for today´s workshop

Veli Stroetmann (empirica)

Dipak Kalra (EuroRec)

10:20 - 11:00

Citizen-centred health and care - setting the scene and good practice examples (government- vs. citizen-driven approaches):

Introduction

NHS 24 and Electronic Health Record Citizen’s Area (Portuguese approach)

Policy framework on Patient Empowerment (PE)

 

 

Maria Cortes, Pavlo Figol (SPMS)

Hannalore Taal

(eHAction PE Lead)

 

11:00 – 11:30

Coffee break

11:30 –12:15

Citizen-controlled data governance; data donation, data cooperatives - setting the scene and good practice examples

Introduction

SALUS citizen cooperative of health data

HealtheIDeID for Citizens in Healthcare Sector

Petra Wilson (PCHA)

Bleddyn Rees (ECHA)

Joan Guanyabens (SALUS)

Zoi Kolitsi (EuroRec)

12:15 – 13:45

Lunch

13:45 – 15:15

Three working groups on citizens’ access to and sharing of health data

Based on existing practices and different approaches, identify key issues and success factors - explore enablers, challenges, incentives, motivation, organizational, legal, technical and interoperability issues

Group 1 – Digital health literacy and empowerment

Group 2 – Citizen-controlled data governance and data management

Group 3 - Data donation, future use and re-use of health data

Moderator(s), Rapporteur(s):

Group 1:

Diogo Martins (SPMS), Kostas Aligiannis (EPF)

Group 2:

Bleddyn Rees (ECHA)

Group 3:

Petra Wilson (PCHA)

15:15 – 15:45

Coffee break

15:45 – 16:45

Presentation of the main conclusions of each group

Rapporteurs

16:45 – 17:00

Wrap-up and next steps