PILOT STORY: Discussing practical experiences with user involvement and ethics

Early 2022, the Research Council of Norway (RCN) invited a selection of inspiring projects within the health care sector to share their experiences with user involvement and ethical dilemmas. This was a first, small gathering in the Involve Hub RCN is undertaking as a pilot in PRO-Ethics.

The Involve Hub is meant to be a network for sharing and developing knowledge on ethical challenges related to user involvement in research and innovation. The learnings will inform RCN's continuous work to improve its funding tools and processes. They will also feed into PRO-Ethics' work to test and further develop the draft framework for ethical citizen and stakeholder participation. The seminar was recorded with informed consent for the purpose of knowledge sharing in future hub gatherings.

Four project leaders and a user representative from one of the projects shared and discussed their experiences with us at the digital gathering. They were all enthusiastic to learn about the PRO-Ethics ethical framework. They appreciated that the format invites to reflection on central issues, rather than trying to give conclusive answers. They also said that in retrospect, it would have been very helpful to have access to such a framework when designing their projects. Maybe RCN should refer to the framework in future calls for project with user participation? As for other input, one of the project leaders wished for more focus on vulnerable groups when further developing the framework.

All in all, this little gathering served as an inspiring start of RCN's hub activities. There were good discussions and reflections on ethical dilemmas connected to participation, we got relevant feedback to our own processes and to the PRO-Ethics framework. We also shared relevant learnings from another RCN-funded project with the participants, who were enthusiastic about continuing the knowledge sharing in forthcoming hub activities.

New call
Another important milestone in RCN's pilot, was launching a call for proposals for communication and collaboration activities within the field of health and care in early January. User involvement and engagement as method and practice was among the aspects emphasized in the call guidelines. Projects that qualify for funding and address or apply user involvement are invited to dialogue and knowledge exchange, as well as to bring their feedback on the ethical framework to RCN's PRO-Ethics team. This collaboration is to be continued throughout 2022, and perhaps also extended to other topics than health and care.

Photo: Project leaders of inspiring projects within the health care sector are sharing their experiences with user involvement with RCN. Copyright: RCN

Published: 26.04.2022

Pilot stories
In the pilot stories, PRO-Ethics' RFO partners tell tales from behind the scenes during the planning and implementation of their pilot projects, offering a peek into how the pilots develop practically and over time. The goal is to better represent and learn from insights and tacit knowledge, some of which might be seen as smaller issues and hence downplayed or forgotten in official reporting, despite the learnings they may bring to others. The stories are fully available to all the project partners and support cross-learning activities and ultimately the ethics framework. Some of the stories will also be shared online with the wider public.