The Research Council of Norway: User involvement gave users real influence

Some of you might remember that the Research Council of Norway gave 30 million NOK (3 800 000 USD/ 2700000 GBP) to ME-research last year and invited ME-patients together with health personell and researchers to advice on how to distribute the funds.

This was a pilot project from the Research Council who never before has welcomed users to the table in this way.

They got an enormous amount of enthusiastic response from patients and seem pleased with the project and the process. They've now written an evaluation of the project (only available in Norwegian) and a news story about the evaluation.

The project has gotten a lot of criticism because an application on a trial on ME and LP by prof. Wyller got refused. Also some people are sharing the myth that it was ME-patients who made all the decisions. That's not true. Some health personell, researchers and patients were invited to a user panel in order to go through the suggestions from the public. The ME-patients in the user-panel were in minority. But they were AT the table for the first time ever - which in itself is huge progress (and apparently very provocative for some people who, for some reason and probably just by chance, all have a biopsychosocial approach to ME in common..).

Forskningsrådet: Brukerinvolvering ga brukere reell innflytelse
google translate: User involvement gave users real influence

"We have learned a lot about how we can become more open and involve users in the allocation processes and have greatly appreciated both the commitment and the level of knowledge among patients and relatives. We used this to design the invitation to the researchers and to identify the most relevant and useful project proposals in the first round, "says Research Council Director John-Arne Røttingen.

 

Things are things definitely afoot now on quite a lot of different fronts. The more things change, the faster things should change ... and the harder and harder it should become for those on the dark side to block change.

 

Probably overused but this quote fits well here:

"First they ignore you, then they laugh at you, then they fight you, then you win” (Gandhi, Klein)

 

With PACE - "First they ignore you, then they laugh at you, then they fight you, then you win a bit, then other people decide it would be really inconvenient if they were to acknowledge you winning, then you win even more, then you spend years walking around telling everyone you won while they say that they really don't have time to check whether that's true or not, then you realise you've got to win over a whole other group of people before you will have really won, first they ignore you...”

 

If anyone wants to give The Research Council a thumbs up for listening to patients and choosing ME as subject for this pilot project, you can do so here on Facebook. I believe they've really appreciated feedback on this project from the public, perhaps particularly from abroad. Please leave a comment as well. Lets hope Research Councils in other countries get inspired.

 

A news site about research has written about The Research Council of Norway's project and its evaluation. It gives a good summary of the process.

Forskning.no: Pasienter og pårørende får bestemme ME-forskning
google translate: Patients and carers gets to decide within ME-research

"We have learned a lot about how we can become more open and involve users in the allocation processes and greatly appreciate both the commitment and the level of knowledge among patients and carers," says director of The Research Council of Norway John-Arne Røttingen.
...

The four ME research projects currently under way will investigate the causes of the disease, how patients and carers deal with public services and test a new treatment. These are the four projects:

• University of Oslo: "Genetic studies in CFS / ME to investigate the potential involvement of the immune system and reveal biomarkers»

• University of Bergen: "Defective energy metabolism in ME / CFS"

• SINTEF: "Individuals and families affected by CFS / ME: Population characteristics, service use and needs"

• University Hospital Nord-Norge, Harstad: "Fecal microbiota transplant in chronic fatigue syndrome - an RCT"

 

An interesting letter-to-the-editor in the newspaper Dagsavisen by a professor, an associate professor and a dean from Oslo Metropolitan University.

The authors discuss who should make decision on research allocations and point to the fact that a lot of health research is basically useless. What kind of research projects that are initiated, and the needs of patients and in health care are not well balanced, according to the authors. They believe a solution can be thorough and systematic searches in current knowledge and solid methods for user involvement in order to secure that research questions haven't already been answered and that they are relevant for patients, carers and health care personell.

They refer to the debate following the Research Council of Norway's inclusion of ME patients in their pilot project on user involvement in research allocations.

The faculty of health sciences at Oslo Metropolitan University has now initiated a project called Building Bridges (Brobyggerprosjektet), where 8 fellows with background from municipalities and hospitals recently began their journeys to PhDs. They are going to find unanswered research questions which are important for patients, carers and relevant clinical milieus. The goal is that when they've finished their PhDs, they will become "bridge builders" in their professional environments, and push for user identified research and knowledge based practice, with close cooperation with academia.

Letter-to-the-editor: Bortkastet forskning
google translation: Wasted research. Who should decide what to research?