Research impact assessment studies show that to achieve more impact on society the participation of ‘people that can provide value’ is an important factor. What these studies show us is that making key actors participate in the long process of research can improve the efficacy of its application and its impact on society. In the conference which AQuAS organised on Participation in Research last April 4, Derek Stewart, very much involved in Patient and Public Involvement and Engagement at the NIHR Nottingham Biomedical Research Centre, told us that participation provides different perspectives to research. In addition, Derek Stewart explained that “while patients have the opportunity to configure the future and make sense of what is happening to them in their day to day, researchers have the opportunity to legitimate what they do and make their results visible.”
So what have we learnt from all this? Firstly, that there is diversity of participation in research with a wide range of ways of interaction that are inserted in the different levels of the research process. Secondly, that despite individual idiosyncrasies, a global and shared approach is needed to avoid contradictions and to take advantage of mutual learning. Thirdly, that a commitment is needed on the part of all the different institutions and the research community in order to favour participation in research and to have an impact on society. This is why a Work Group on Participation in Research has been created, (#SomRecerca). Under the initial coordination of AQuAS, different health research institutions have come together to promote actions, agents or strategies that facilitate participation and that foster more awareness of the research community. The principles that accompany this group are based on mutual support and the acceptance that diversity and different realities exist within each context.
The first step taken by this group has been to hold conferences in two institutions (IMIM and IDIBELL), last 22 and 23 of January, under the title Shall we go one step further? Placing the patient at the centre of research. These conferences have been a good opportunity to present experiences that were already on the go within the institution itself which place the patient at the centre of research.
The conferences have made the different experiences stemming from individual motivations worthwhile, of researchers or users themselves, and they have been inspirational as examples of where one can start. The patient has been placed at the centre of research in these experiences: to obtain resources, to generate ideas, to prioritise research or to be a part of the research team, among others.
And more specifically, actions have been proposed that help develop the participation of patients which provides value in research:
- Informing patients of the research that is being carried out in institutions; that is, bringing research closer to citizens
- Communicative skills of the researcher towards a non-scientific audience
- Effective communication channels between patients and researchers, be they via an associative network or via other activities or means of communication such as conferences with patients, etc…
- Support for all those involved in participation: of recruitment, of time, of resources, between researchers or with a guide.
- Stable work groups that include the participation of different profiles (basic and clinical researchers, assistants, managers and patients) so as to identify needs, come up with ideas or make proposals, for example.
In short, the synergies between patients and researchers must be sought out in those cases where value can be provided. It is not always and easy path but one which makes a whole lot of sense.