From patient experience to targeted research – podcast
What happens when patients not only participate in research, but actually help shape it? In this podcast, hosted by PROMINET, the spotlight is on user participation in research. The goal is simple but ambitious: to make research more relevant to those it concerns most.
In the picture, Joachim Sagen, Ingvild Kjeken and Kenth-Louis H. Joseph.
– Good research is improved when patients contribute their views and experiences, says Ingvild Kjeken, senior researcher at Diakonhjemmet Hospital and professor at OsloMet.
Collaboration with patients
She has worked with user participation for many years and explains how input from patients early in research projects can change both the questions asked – and the answers found.
– It's about collaborating, not just collecting data.
What user participation is – and is not
The episode clearly explains what user participation is – and what it is not.
User participation in research means that people with their own experience of illness collaborate with researchers as equal partners, from project idea to finished results.
When it works best, it contributes to research that is easier to understand, easier to use – and faster to implement in healthcare.
Other questions – other answers
Joachim Sagen, head of research at the Norwegian Rheumatology Association, knows this both from the patient side and from the research field.
“When users have an actual voice in the projects, other questions are asked. Often it is more about everyday life, coping and quality of life – not just medical goals,” he says.
He believes that user participation makes research more democratic and helps ensure that the results reach more people.
How user participation can work in practice
The episode also provides concrete examples of how user participation can be implemented in practice, and what it takes to make it work over time.
Early role clarification, good communication and organization are crucial. As are support, training and recognition of the expertise user collaborators bring to the research.
A necessary part of modern research
In the end, the message is clear: User participation is a necessary part of modern research, and contributes to better treatment and better healthcare services.
Listen to the episode here:
