Stakeholder workshop with patient representatives

Do biomaterial donors want to be informed of research findings achieved using their samples? What do patients think of possible online portals that allow them to manage things like their declarations of consent?

Dr. Cecilia Engels (IT Coordinator, German Biobank Node, GBN), Prof. Dr. Hans-Ulrich Prokosch (IT Director, German Biobank Alliance, GBA) and Christina Schüttler (also GBA) discussed both these and other questions with patient representatives at a stakeholder workshop held in Berlin on 17 October 2018.

Transparent, comprehensible communication

Hans-Ulrich Prokosch kicked off the workshop with an open brainstorming session. Dr. Katharina Glanz from the German restless legs association (RLS e. V.), Hermine Nock from the national association for children with heart diseases (Bundesverband Herzkranke Kinder e. V.) and Dr. Wiebke Papenthin from the association for Wilson’s disease (Morbus Wilson e. V.) all called for donors to be informed in clearly comprehensible language and for transparent communication, especially with regard to the use of biosamples.

Presentation of Jena’s pilot project

Andreas Henkel, who is the IT manager at the university hospital in Jena, presented the online portal being developed there as a “pilot project”: patients are able to use the portal to book hospital appointments, for example.

He proposed a model for adding a section containing information about donating biomaterials to such a portal. Donors could manage their declarations of consent and view information about research findings (but no individual results), for instance. Hans-Ulrich Prokosch presented preliminary ideas for an information film for potential donors.

Information and support from clinical staff

The patient representatives were impressed by the model for such a portal, but reminded of the stringent requirements for data protection and inclusion – to cater to older donors, for instance, who are not competent in the use of technology or the internet.

The success of such a portal would moreover largely depend on the clinical staff, who would have to use and promote it themselves. They expressed the wish for a modular declaration of consent to manage potential subsequent contact as well as information requests (for feedback on general research results) in several steps.

Discussion to be continued

The workshop outcomes will be included in future discussions on a donor portal. “We are very satisfied with the meeting outcomes and would definitely like to keep in touch with the patient representatives,” commented Hans-Ulrich Prokosch.

View the German-language press release about the stakeholder workshop published by the German restless legs association (RLS e. V.).