CSOs should make sure any research which they support is relevant to their interests, cause, membership or beneficiaries in the first place. The research should also be a good fit with strategic priorities for a given period. CSOs should carefully analyse the research field, the research partners, expected results, possible innovations arising and the ultimate impact before they commit. It is also important to consider what benefit or harm participation in research may have for the CSO’s reputation.
The following questions could guide CSO leaders in their decision:
To what extent does the research further our organisation’s mission and priorities?
Are we clear about the limitations as well as the potential of the research and its likely results?
How might our participation affect the CSO’s reputation?
What is the risk that the research could harness our CSO for its own ends without real involvement?
Several CSOs representing patients with a chronic condition became involved in a research project without funding or being formal project partners. They did so because they had high expectations regarding the ultimate goal of the research. They were very keen to give their input and ensure that the research could improve the lives of patients suffering from the chronic disease by creating a new medical product. The CSOs influenced the project through patient feedback on the use of the product – this was vital to its success.
'I am listened to quite a lot. If I say that something is good, they will be happy to take it that way. But if I say things need tightening up, then I always feel that they go back to the drawing board and come back with ideas and ask what I think of these'.