P2. Create an environment conducive to CSO participation in research

As existing institutional and funding arrangements are often not conducive to the inclusion of CSOs, a key recommendation to policymakers is to foster an environment that allows CSO inclusion. This means rethinking of current arrangements and being sensitive to whether they unjustifiably favour research institutions. Many of the more detailed recommendations below contribute to the overall aim of creating an environment where CSOs can positively contribute to research.

Guiding Questions

Policymakers devising research policy of relevance to CSO involvement should ask themselves:

  • Do you understand the goals of CSOs and how these can be reflected in research policy? If CSOs can see that their goals are taken up by policy and that research with CSOs influences policy agenda, then this will be a great motivation for CSOs to get engaged.

  • Do you understand the range of different types of CSOs and how research fits their needs and agendas? While there are some large and prominent CSOs, the majority are relatively small and have limited financial and organisational resources. This means that bureaucratic requirements such as financial reporting can cause significant problems for them. They also often lack the capacity to follow research calls and react to them.

  • Is your view of science compatible with the ethos of CSOs? At present most research funding allocations are highly competitive and this is desired as it promises high quality research. While scientific excellence is a cornerstone of all publicly funded research, it is important to consider what constitutes such excellence in particular in research addressing societal problems. The current funding regime promotes a particular view of science and research that some of the CSOs we encountered were not comfortable with. CSOs are often community-oriented and inclusive rather than competitive. For such CSOs to feel welcome, research should aim at collaboration rather than competition. While there are doubtlessly benefits to be derived from scientific competition, more collaborative views of research could foster CSO engagement.

Example: Limited engagement of informal patient group

A collaborative EU funded project looking at an ICT enabled system for patients with a chronic disease incorporated a CSO for trial and feedback purposes. The CSO which was a patient support group had an indirect role in the project because it had no budgetary allocation and therefore did not constitute part of the consortium. Although the patient support group contributed significantly to the research, their participation could have been made better. This could have been achieved especially through a conducive environment which should have factored in funding for the CSO's research efforts in the project. As it was, the arrangements were more favourable towards researchers and therefore privileged them over CSOs who had no funding outside reimbursement of travel for their part in the research.

A conducive environment would entail policy makers recognising the different status that CSOs hold. Our research has shown that CSOs without the required EU demand of a legal entity struggle to be recognised as bona fide partners in research because as one research participant observed they are seen as a ‘Club’ and not an official organisation.

This makes it difficult for them to acquire funding that scientific researchers are normally in a position to acquire. Due to this they are usually unable to co-fund research which leaves them with little or no influence in research, other than as entities that are there to give feedback as well as to help researchers establish links with interest groups that the CSOs represent.

'And there is no, there is no society for that. But this is only that club. They are not an organisation so they cannot receive funds or something like this. And this was the problem we had in ***** project somehow'. (Researcher)