Patient organizations as (co-)founders of data registries. A pilot project for the in-depth research participation of their membership.

The starting point of our project ORIENTATE is the insight that patients rarely participate as co-researchers in quantitative research studies. So far, little is known about whether patients want to actively participate in this field of research, and if there is a need, what support they need as co-researchers. In our project, we are therefore using an online survey (needs assessment) to determine patients' needs for participation in quantitative studies. In addition, we are also determining which requirements are placed on patients from their point of view in the context of research participation. In collaboration with PRO RETINA, we are developing educational formats (2-hour workshop and podcasts), which will also be conducted jointly as part of the project. PRO RETINA members can participate in both the online survey and the workshop.

In addition, a handout for researchers on the topic of successful participatory collaboration will be created in the exchange and subsequently discussed with researchers and PRO RETINA members to include both perspectives. Further opportunities for member participation will be determined as the project progresses. PRO RETINA members will have the opportunity to contact project participants at any time to contribute their ideas and questions. In the spirit of participatory research, PRO RETINA will take an equal role throughout the course of the project, including the publication of the results. We are convinced that the chosen co-research approach helps to ensure that the tools developed (needs analysis, training formats, handout for researchers) are better tailored to our target group and, at the same time, can be more easily reused by other co-researchers.

Scientific background

Research question: How can the role and participation of patients in quantitative research studies be sustainably improved? We ask whether there is actually a need for patients to participate in all research phases of a research study. And what competencies do patients* need to have as co-researchers in order to participate in a study?
Objectives: Our project aims to analyze the participation needs of and requirements for patients in quantitative, complex research studies. Based on our analysis we develop
a continuing education format to promote improved participation for patients. In addition, we will create a handout for academic researchers with hints, suggestions and ideas that can be used for successful collaboration with patients.
Methods: Co-research (participatory implementation of the project); quantitative needs assessment in the form of an online survey; co-development and co-implementation of educational formats that will be evaluated; workshops.
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Figure 1: Desire for participation in three phases of a research study by PRO RETINA members.

Current status

The ORIENTATE project, jointly conducted by HAW Hamburg and PRO RETINA Deutschland e.V. and funded by NFDI4Health/DFG, aims to sustainably improve the role and participation of patients in quantitative research studies. Prof. Wöhlke, Professor of Health Sciences and Ethics, emphasizes: "Our project with PRO RETINA is a pilot project that makes an important contribution to the development of patient-oriented medical research, from which other patient* organizations can later benefit. We want to give patients a voice and ensure that their needs and perspectives are taken into account in research."
In June 2023, a face-to-face meeting of the project team, consisting of co-researchers from HAW Hamburg and PRO RETINA, took place in Hamburg. "The face-to-face meeting was a good opportunity for us to take a close look at the various aspects of the ORIENTATE project and take them one step further," says Thomas Duda, Head of Digitalization at PRO RETINA. "In addition, getting to know each other in person was very valuable. We are planning a next face-to-face meeting in October this year, this time at our PRO RETINA office in

At the face-to-face meeting, the results of the online needs analysis were discussed and the next steps for the joint development and implementation of the training formats were discussed. Dr. Henk J. van Gils-Schmidt, research associate at HAW Hamburg, is enthusiastic: "It is gratifying to see that our results show a strong interest among PRO RETINA members in actively participating in the various phases of quantitative research studies (see Fig. 1). This finding is valuable not only for our project, but also for other researchers in the quantitative field." In addition, it became clear that PRO RETINA members would like to see formats such as podcasts as well as workshops for the continuing education formats that will be developed-to strengthen patients* competencies for participation in research projects.

In the next phase of the project, the educational formats will be designed, implemented and evaluated. In addition, a handout for academic researchers will be created, which will provide impulses for a more in-depth discussion regarding successful collaboration with patients.


ORIENTATE is a participatory project jointly conducted by HAW Hamburg and PRO RETINA Deutschland e.V..
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