Patient Advocacy - an update

Patient advocacy from the front lines:

To all my RA friends: Getting better treatment for Rheumatoid Arthritis and chronic pain is hard and the pharmaceutical treatment often has a lot of side effects.

I have had RA since the age of 19. I've been disabled and was given up by the health care system, but with hard work, some treatment, dietary changes and maybe a bit of luck, I've been in deep remission for many years. I am now able to use my experience to help others. For the last 10 years I've worked for the Norwegian Rheumatics Association - where we lobby for better treatment, more research and access to rehabilitation, benefits etc.

In my job I work closely with scientists to apply for funding for new projects. The scientists working on new projects have to have support from patients in order to get funding now, after studies have shown that 85% of all research is wasted. Over the years I keep seeing that the doctors & scientists are unwilling to do research that would actually make any big difference. They keep doing the same kind of studies.

"What drug works better to lower inflammation a little bit? Drug X og drug Y?"

Then they spend 6-10 years and several million $$ on a study to see if that drug helps 2% more than the last one. Maybe it does, maybe it doesn´t.

--> Progress is SO SLOW!!!

After getting tired of seeing this I decided to turn the tables. I went straight to the research council, and the Ministry of Health here and said that we want money to find out what the PATIENTS want more research on. As a chief advisor of the biggest patient org on rheumatic illness in Norway, they listened to me. I wrote an application for a James Lind Alliance process, to do this in a structured way, and we got funding.

In Spetember 2022 we finished the project, with 5346 patients from 5 different patient orgs participating. The resulting Top-10 list of questions that the patients want more research on was astounding!

WE want more research on how to PREVENT rheumatic illnesses. We want to know how chronic pain affect patient's general health. We want to know more about gut health and rheumatic disease. Why does RA flare - why do these diseases vary so much in intensity?

We want less funding for new programs on positive psychology and empowerment programs and more funding for finding root causes. This was actually said because lately a lot of research has been focused on positive thinking - after health politicians started grouping musclo-skeletal disease with anxiety and depression (seriously, they DO!).

Long story short: I presented this project at the Research Council, who funds new research, and for all the scientists at the centre for musclo-skeletal health. The Research council loved it, and the scientists were quite taken aback. They seemed shocked that the patients would come with their own demands, not just nod and smile and gratefully accept whatever was offered.

We are now working to get this project published in scientific journals. The James Lind Alliance method is extremely thorough and is the gold standard of patient involvement in research - it's been extremely interesting to learn about it.

I just wanted to share this with you - my fellow patients. Often it feels like we are alone, fighting our pain and fatigue without anyone knowing what we are going through.

I want you to know you are not alone.

We are so many - all over the world - who are fighting for you

There are exciting things happening in research on rheumatic disease, if we stand together, we can make these changes come faster.