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The patient as partner in Danish health research

In the past 10-15 years, the importance of patient and public involvement (PPI) in health research has become widely recognised, in particular in the UK and Northern America. In Denmark, the first coordinated PPI initiative was made in 2012, when the National Forum for Health Research under the Ministry of Health issued a report with a set of recommendations for PPI. The report gave the first set of recommendations on a national level for the implementation of PPI. It also stressed the need for coordination of activities and sharing of experiences of PPI in research in Denmark.

However, the recommendations from the report were not followed up at the level of health and research policy. This was recognised in 2016 and as a result the project “The Patient as Partner in Danish Health Research” was established and funded by the National Board of Health. The aim is to ensure a coordinated collection and sharing of experiences among actors of PPI in Denmark. The project has four main activities:

1) Mapping of planned and ongoing PPI activities at the research project level and at the level of organisations for research funding and research policies.

2) Systematic collection of existing knowledge on user involvement in research from the international literature as well as guidelines published by PPI organisations.

3) Organisation of a series of knowledge sharing workshops for groups of research units and for Danish research organisations and research funders with the aim of sharing experiences and developing new skills.

4) Establishment of a digital platform providing a set of “best practice” recommendations for PPI.

“The Patient as Partner in Danish Health Research” project is based at University of Southern Demark in the Research Unit of User Perspectives, led by Professor Mogens Hørder, and carried out in collaboration with The Danish Knowledge Center for User Involvement in Health Care (ViBIS) and INVOLVE, UK.

Contact person: Mogens Hørder