R1: Clarify your reasons for CSO involvement

The crucial recommendation for researchers when deciding whether and how to work with CSOs in research is to come to a clear view of why this is an option worth pursuing. Clarity of purpose is key to formulating expectations and preparing required actions. There are a variety of possible general advantages of CSO engagement that have been identified as part of the CONSIDER project, and there may be others that are linked to a particular topic or context. Additionally, it is important not only that the researchers are clear about why they wish to involve CSOs in the project, but also that such reasons are shared openly and discussed with other project partners.

It is important that all parties build in dedicated time at the start of the project to clarify the roles, responsibilities and expectations of all project members - researchers and CSOs alike. This is particularly important if CSOs were originally included in the project in order to fulfil funding requirements or other externally-driven motivations; in such cases the researchers need to make their expectations of the CSOs explicit in order to avoid later conflict. If CSOs are actively contributing to the research process, respective expectations should be discussed and overlapping elements identified.

Including CSOs does not imply that the research must focus solely on market-oriented outcomes. Within CONSIDER there is evidence that CSOs are just as interested in expanding the boundaries of our knowledge as researchers. According to both project coordinators and CSO members, they consider the primary outcome of the project to be to enhance scientific knowledge (75% and 50% respectively). Both groups are also keen on policy-oriented outcomes.

Guiding Questions

When starting a new research project researchers should consider questions such as:

  • What added value would CSO involvement be expected to contribute to the project? The answer to this key question should be communicated to potential partners as part of the initial negotiation and bid preparation processes.

  • Why would a CSO want to participate? CSOs normally have social aims and the project needs to contribute to these.

  • Which types of CSOs exist in the field and which CSOs would fit the requirements of the project?

  • Are there any potential disadvantages to the CSO in being involved? If the research takes place in a highly contested field, the CSO’s engagement should be well defined to protect both the CSO and the project.

  • Is there an existing relationship in place, and/or sufficient time available to develop trust between the researchers - CSO partners? If the involvement of CSOs is expected to be of high importance for the production of knowledge, then the researchers need to trust in the CSOs. This trust can be based on shared experiences of cooperation which take place before the start of the project.

Example: Engaging a local patient group to prepare a European proposal

A southern European research institution decided to develop a proposal for a European call that sought to develop ICT applications for stroke victims. The coordinator of the proposal was an experienced researcher but her main expertise was in a related field, not exactly in the area of the call. However, as a senior scientist in a well-run research centre, she was confident enough to approach some of the leading research centres in the technical area and convince them of the value of collaboration.

As the project was aimed at a particular patient community, it was clear to the consortium members from the outset that these potential users and beneficiaries of the project would need to be represented in the project. This was also a requirement of the call. Here the reason for CSO involvement was the need for an intermediary role, linking scientists and patients and helping to build trust relationships, as well as a call prerequisite.

The coordinator included two CSOs in the consortium. One was a specialist healthcare foundation in another country. The second one was a smaller patient organisation that was located in close proximity to the coordinator. This second CSO was not research-oriented but had worked with the coordinator on previous occasions. The shared language and physical proximity facilitated discussions and the collaboration history had created mutual trust. This set-up was evaluated positively by both the coordinator and the patient groups. It did create some problems later on, however, when the lack of a shared language made collaboration of the smaller CSO with other consortium partners from different countries more difficult.

'I think they [the CSO partners] were very important and the project could not have been possible without them. They helped in the writing of the proposal first of all, identifying precisely who would be our target users and also helping to define a methodology. ... When we started the first thing we did was meet with them, do some focus groups both with clinicians and also with carers and patients and end users. They helped us define the road map of the project, and there were continuous interactions with them in the development and testing of the prototypes and getting feedback. So they were key in the whole project'. (Project Coordinator)