b. Patient collaboration

The UMCs encourage all researchers to involve patients and patient organisations in their research, from design until completion. This will improve the quality, quantity, and real-world relevance of your research data.

Patients and patient organisations can:

  • suggest research questions;
  • help recruit study subjects;
  • select relevant outcome measures;
  • help design the informed consent procedure;
  • advise on policies, for instance regarding incidental findings;
  • help to communicate research results back to study subjects.

Frequently Asked Questions

Contact the appropriate patient organisation (e.g., VSOP, Diabetes Foundation) at the start of your research project.

Yes. For instance, the scientific journal BMJ Open demands a PPI statement (PPI = Patient and Public Involvement) in the methods section of all its publications.

This statement should answer these questions:

  • How was the development of the research question and outcome measures informed by patients’ priorities, experience and preferences?
  • How did you involve patients in the design of this study?
  • Were patients involved in the recruitment to and conduct of the study?
  • How will the results be disseminated to study participants?
  • For randomised controlled trials, was the burden of the intervention assessed by patients themselves?
  • Patient advisers should also be thanked in the contributorship statement/ acknowledgements.
  • If patients were not involved, authors must state this.

The PGD (persoonlijk gezondheidsdossier, personal health record) debate is about the right of citizens and patients to manage their own medical data. This will change the hierarchy between the current stakeholders in research because patients will join as important new stakeholders. As a consequence, the (re)use of data may become a more transparent and democratic process. For instance, the Medmij programme will ensure that people can collect and use their health data from various sources in a safe online environment. Also, a dynamic consent procedure is being developed and tested.

Your DMP may include a Privacy Impact Assessment, to ensure that you handle personal data in accordance with the General Data Protection Regulation.

Please have a look at the Participatiekompas, where you can find knowledge and best practices on patient and client participation in scientific research, policy and quality of care. For more inspiration, you can consult the publication BBMRI-NL: The donor as partner. How to involve patients and the public in the governance of biobanks and registries.