Welcome to the

Stakeholfer-Conference
“Shaping Digital Health Research Together”

3–4 June 2024 | KörberHaus | Hamburg

What is it about? Digitalisation is fundamentally transforming many areas of health research and healthcare.
This transformation process requires the participation of key stakeholders, such as patient and self-help organisations.

Who is it for? Our stakeholder conference was aimed at representatives of national patient and self-help organisations.

When and where? The two-day stakeholder conference took place from 3–4 June 2024 at the fully accessible KörberHaus in Hamburg.

Goal of the conference: The aim of the conference was to develop recommendations and solutions to strengthen the involvement of patients in shaping the digitalisation of healthcare and health research.

Podcast: “Digital Pathways in Healthcare: Focus on Ethics, Patient and Self-Help Organisations” (in German only)

A special episode in German about the stakeholder conference held on 3–4 June 2024, featuring PANDORA project leaders Prof Dr Sabine Wöhlke and Prof Dr Silke Schicktanz.

Podcast-Episode-Stakeholderkonferenz_final_mp3Herunterladen

Step 1: Registration and initial statements


Patient and self-help organisations registered their general interest via email by 15 February 2024.

They submitted short position statements by 15 March 2024 and, if relevant, registered for participation in the conference.

Step 2: Discussions and development of a position paper

During the conference, representatives of these organisations discussed the submitted statements and jointly developed a position paper.

Step 3: Presentation to policy-makers and the public

After the conference, the position paper was presented to decision-makers in healthcare and health policy, as well as to the wider public.

Throughout this process, ethical and practical aspects and the challenges of digitalisation in healthcare were carefully examined.
The researchers took on a coordinating role, ensuring a structured and inclusive process.

Why is this important? We want to give patient and self-help organisations the opportunity to work together to develop solutions so that the opportunities of digitalisation in healthcare can be used optimally for the benefit of patients.

Online Training: Data Protection in Healthcare

The PANDORA team organised a two-part online workshop for conference participants on the legal foundations and practical aspects of data processing in medical research.

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.
More 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 serves as a patient representative for the Federal Association of Patient Centres (BAGP), where he is spokesperson for digital health.

His roles include:

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

Further information: Profile at MHH

The Organisers

The stakeholder conference was organised by the PANDORA research project (Patient-Oriented Digitalisation), funded by the Federal Ministry of Education and Research (BMBF).
You may have already heard about us, particularly through our recent online survey.

The research team includes experts from:

  • Hamburg University of Applied Sciences (HAW Hamburg)
  • University Medical Center Göttingen (UMG Göttingen)
  • Hannover Medical School (MHH Hannover)

The PANDORA Patient Advisory Board actively supported the conference to strengthen the patient perspective in the current discourse on digital health research.

Contact

If you have any questions or comments, please feel free to email us:

Prof Dr Sabine Wöhlke
Conference Lead, Sub-Project 1
Sabine.Woehlke@haw-hamburg.de

Paula Nadler, B.Sc.
Project Assistant, Sub-Project 1
Paula.Nadler@haw-hamburg.de