Involvement of patient organisations in digital health research : consensus position paper on the current status with demands for the future

Abstract

As part of a discourse process, patient organisations/self-help groups in Germany (see section D) have drawn up a position paper on the involvement (participation) of patient organisations/self-help groups in digital health research. Based on the current situation, the following points were identified:

- Participation and compensation in research

- Information and consent processes in the context of digital health research

- Research management and data sharing

With this position paper, patient organisations/self-help groups are formulating important demands to health policy decision-makers. These are the key points in summary:

- In order to ensure success and achieve a minimum level of cooperation between patients and researchers, patients and their representatives must be actively involved in digital transformation processes from the outset.

- The participation of patient organisations, affected individuals and relatives in the application of digital research processes must be designed realistically by all parties involved. This requires, in particular

- a clear definition of the scope and form of participation, transparent involvement of patient organisations from start to finish, from planning and application to research results,

- the empowerment of patient organisations to participate in the research process,

- an understanding of the specificity and variability of voluntary structures, and

- target group-oriented, barrier-free preparation and communication of research results.

- Professional, financial, personnel, structural and technical resources are a basic requirement for the involvement of patient organisations.

- Increased attention must be paid to vulnerable groups. Stigmatisation and discrimination must be prevented.

In principle, patients should be the owners of their health data, contrary to the current legal situation. Only patients themselves should be able to decide on the further use of their data.