Description

The assumption of Athena’s research program is that in order to realize the development of ‘inclusive’ science and technology, the knowledge and expertise of a diverse group of non-scientific actors need to be integrated in decision making on innovation processes. The rationale for this is that these actors have relevant knowledge and different perspectives.

A further assumption is that this integration should take place early in the innovation trajectory through a well-designed interaction process. The interaction should lead to a gradual deepening of the understanding of different perceptions concerning the definition of the problem context and the desired outcomes. In addition it should lead to a joint vision on how to proceed. The key question then is: how to organize the interaction in such a way that meaningful exchange of knowledge and expertise between scientific and non-scientific groups can take place effectively. This requires:

  • an understanding of the dynamics within  and between science and society;
  • methodologies (principles and heuristics) that can guide multi-stakeholder innovation processes
  • strategies that can sustain and upscale such processes.

To realize such a structured interaction process, we have developed a model for understanding and influencing interaction between actors in science and society, as well as a methodology to operationalize the model (the ILA approach). The model integrates available knowledge and perspectives on societal needs and on potential innovations from relevant actors in societal and scientific fields (e.g. scientists, policy makers, societal organisations, companies, citizens, and consumers) on three levels of analysis.

Public involvement in research

The Athena Institute, VU University Amsterdam work on a great diversity of project concerning patient and public involvement:

  • research agenda setting/priority setting with multi stakeholder groups including patients
  • Patient involvement in care guideline development
  • Patient involvement in setting up quality criteria for care
  • patient involvement in developing self management tools
  • patient involvement in clinical trials
  • structural patient involvement in  health research
  • sustainable patient involvement
  • elderly involvement in home care
  • child involvement in health research

Prof.dr. Jacqueline Broerse is professor of ‘innovation and communication in the health and life sciences, in particular addressing issues of diversity and social inclusion’ at the Athena Institute, VU University, Amsterdam. obtained her doctorate in 1998 at the VU University with a thesis on participatory approaches to research priority setting in developing countries. Her research is focused on methodology development for realizing a science-society dialogue in new and emerging (system) innovations in the health and life sciences. She has developed methodologies to facilitate patient involvement in health research and care, and to realize multi-stakeholder participation in national health policy. She has been involved as advisor and facilitator in four interactive policy-making trajectories of the Dutch Ministry of Health, Welfare and Sports, in research agenda setting from patients persepctives, methodology development for structural and sustainable patient and public involvement and development of dialogue methods.

Janneke Elberse, PhD, MSc  is a researcher at the Athena Institute. She is working on improvement of patient participation in health research. Her main interest lies in enhancing a system innovation towards a more needs-oriented health research system assuming that inclusion of patients in the health research system could act as a leverage point inducing change. She is involved in various projects concerning patient involvement, including several health research agenda setting projects (eg. asthma/COPD, congenital heart disease, medical product development, Alzheimer’s’ disease), structural patient involvement by means of patients research partners (trained patients who join a research team), patient involvement clinical trials for people with breast cancer and a European project on patient reported outcomes (PRO) in clinical trials. By using these different case studies she tries to gain insight in enabling factors and barriers for structural patient participation in research in order to stimulate a shift towards needs-oriented health research.

Coverage

The Netherlands

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