Project Timeline

Stakeholder Conference: “Shaping Digital Health Research Together”

Welcome to the information section of our stakeholder conference on “Shaping Digital Health Research Together”, which took place on 3–4 June 2024 in Hamburg.

Here, we provide a detailed insight into the core themes and objectives of the conference, which focused on promoting patient participation and optimising the digital transformation of healthcare.

Conference Report and Further Project Steps

The event brought together 39 representatives from patient organisations and self-help organisations from across Germany.
At the Körber Haus in Hamburg-Bergedorf, 27 participants attended in person, while 12 participated online.

Fig. 1: Participants of the stakeholder conference “Shaping Digital Health Research Together”.

Over two days, participants worked in small groups to engage in intensive discussions on key topics, including:

  • Informed consent and information processes,
  • Research data management,
  • Participation in research,
  • Digital inclusion, and
  • Ethical values relevant to participatory research.

The goal of these discussions was to develop a consensus-based position paper. The PANDORA research team supported the participants through facilitation and by drafting the initial version of the position paper.

At the end of the second day, participants were able to present a first preliminary draft of the position paper.
To finalise this draft, the participants elected an editorial team made up of four representatives from POs and SHOs.

The editorial team then sent the draft to all participating organisations for feedback and comments. These responses were carefully reviewed and incorporated into the final version of the paper. The completed position paper will be presented to the public and political stakeholders in November 2024 during a press conference in Berlin.

For a comprehensive overview and detailed information on the discussion topics, we invite you to download our information PDF, which includes in-depth insights and additional background on the conference.

Online Training: Data Protection in Healthcare

To support participants in understanding the legal and practical aspects of data use in healthcare research, the PANDORA team organised a two-part online workshop.

Part 1: 1 July, 15:00 – 16:00

Prof Dr Sebastian Graf von Kielmansegg
Topic: “Legal foundations for data processing in medical research”

Prof Kielmansegg teaches and conducts research at the Christian-Albrechts-University of Kiel and has extensive experience in the legal evaluation and regulation of data processing in medical contexts.
Further information: University Profile

Part 2: 3 July, 15:00 – 16:00

Jürgen Kretschmer, Dipl. oec. troph.
Topic: “Practical aspects of patient consent and opt-out for the use of data in research (e.g., information, consent formats, transparency)”

Jürgen Kretschmer is a research associate at the Institute for Epidemiology, Social Medicine and Health System Research at Hannover Medical School (MHH).
He is also a patient advisor at Gesundheitsladen München e.V., and a patient representative for the Federal Association of Patient Centres (BAGP), where he serves as spokesperson for digital health.

In addition, he is a member of several national committees, including:

  • Advisory Board of gematik,
  • Working group on healthcare data at the Health Research Data Centre (FDZ Gesundheit),
  • Working group on “Digitalisation” in the Coordinating Committee for Patient Representation at the Federal Joint Committee (G-BA), and
  • Deputy patient representative on the new Digital Advisory Board of gematik (§ 318a SGB V).

Further information: Profile at MHH

Further Information (only available in German)

  • Background on the Stakeholder Conference:
    Learn about the aims of the conference and why it was important to involve patient and self-help organisations.
    [Background Information (PDF)]
  • Detailed project outline and methodology:
    For a comprehensive overview of the conference methodology and planned process.
    [Project Outline (PDF)]
  • Recommended literature:
    Additional reading on the methodology and key topics of the stakeholder conference.
    [Literature Recommendations (PDF)]