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Does involving people living with diabetes in research improve health outcomes?

A review by Australian and European researchers explores factors behind successful involvement and makes recommendations to increase participation

By Dr Amelia Lake [1]


Best practice health research ensures involvement of people with health conditions (known as ‘Patient and Public Involvement’ or PPI).  It has been shown that PPI results in better program uptake (particularly for vulnerable and hard to reach groups [2]) and in the content or materials appropriate to their needs. While PPI is recommended [3] and well-accepted, there is a lack of evidence on effective PPI strategies in diabetes research. A recent review [4] by Dr Janet Harris [5] (University of Sheffield) and colleagues published in Health Expectations [6], aimed to shed light on key elements of PPI in reducing risk for developing diabetes and promoting diabetes self-management.

In their wide-ranging realist review, the study authors identified three PPI elements that were positively associated with study involvement and participation. Firstly, frequent contact between researchers and people with diabetes and/or their communities contributed to high rates of research participation. Regular contact allowed development of relationships between the parties involved. Second, when the programs were delivered by local workers retention was higher. Third, reciprocal relationships (whereby people with diabetes were equal members of the team) and cultural adaptation improved program relevance. The successful projects identified in the review incorporated overarching principles associated with feasible and relevant diabetes health programs. These were understanding of community context, trusting relationships across sectors and productive partnerships.

The authors also highlighted several issues in regard to best-practice PPI-based research. These included overall low proportion of diabetes studies which incorporated these PPI elements and relatedly, lack of detailed explanation within those studies which did. Finally, with a key element of successful PPI being a wide- and long-term approach, the authors called for greater prioritisation of funding [7] for research designs which allow the time needed for long-term, relationship-building activities.

Harris J, Haltbakk J, Dunning T, Austrheim G, Kirkevold M, Johnson M, Graue M. How patient and community involvement in diabetes research influences health outcomes: a realist review [8]Health Expectations, 2019; Jul 8 (Epub ahead of print): doi.org/10.1111/hex.12935.