As with most conferences and conventions, much of what researchers and clinicians (and patient advocates such as myself) took away from the recent European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) congress was acquired between sessions, in corridors and lobbies, and over coffee (or a beer).
But the sessions were informative, too. Case in point: one of the panels presenting at the closing Patients’ Day event.
MS Organizations Span the Globe
Through the course of the congress, I learned that there are more than just the American (ACTRIMS) and European (ECTRIMS) organizations in the world.
There are also committees (-CTRIMS) from Asia (PACTRIMS), Latin America (LACTRIMS), Middle East – North Africa (MENACTRIMS), Russia (RUCTRIMS), India (ICTRIMS), Brazil (BCTRIMS), Mexico (MEXCTRIMS), and Sri Lanka (SLCTRIMS).
At the Patients’ Day event, we heard the message from both leaders in MS research and the patient advocacy community that current studies don’t recruit broadly enough to take into consideration the diversity of the international MS community.
There are, obviously, a myriad of ways to expand research recruitment. There are likely nearly as many hindrances. I would have to suspect that there isn’t a “pull one lever” solution for this complex international issue. Rather, a series of levers affecting several different factors will likely need to be pulled to bring about the eventual desired result.
Add Patient Advocates to Research Studies
One of the easy wins that came to my mind was expanding the requirements for patient advocates on research studies sponsored (or supported) by patient advocacy organizations such as MS societies around the world.
I have been an active advocate on important studies, including a drug study for progressive forms of MS, myself. They can be intimidating affairs, as not all researchers are keen to have patients involved, as described by?Bioethics Today. The patient’s voice, however, is imperative when designing, recruiting, reviewing, and publishing the results of such studies.
It shouldn’t be done without us. But is one person with MS enough? I think perhaps not.
Add Diversity When Planning Research Projects
If diversity in study recruitment (thus results) is a goal, surely that diversity must be firstly represented in the panel of people developing the study criteria.
I’m not calling for a panel of advocates rivaling the investigators in size. I’m calling for simply expanding the requirement to (at least) two people who come from a diverse background (including sex, race, genetic susceptibility, geographic location, and others worth discussing) to help shape upcoming research projects to meet the admitted desire of researchers, patient advocacy organizations, and people with MS themselves.
If an MS society is going to help fund research, it should insist that new criteria for patient advocacy be met before the project is approved. This new requirement would rely on there being a broad base of engaged patients.
I look to the European Patients Academy on Therapeutic Innovation (EUPATI) as an excellent example for expanding such a base of patients.
A Worldwide Disease Deserves a Worldwide Effort
Being around the vast international representation of MS clinicians and researchers (and students and advocacy organizations) at the ECTRIMS congress showed me just how broadly the struggle with and effort to treat and cure MS goes. It’s a worldwide effort, to be sure. But the results of research studies do not cover the breadth of patients on our planet well enough.
By enticing a wider spectrum of people living with MS into the ranks of research patient advocates, we can begin to expand the potential impacts of research to a broader population of those affected by MS.
MS Organizations Can Take the First Step?
Knowing what I now do, I call on MS societies and the International MS Federation (MSIF) to begin the work of expanding the diversity (and number) of patient advocates on research they sponsor or fund.
It’s not a switch that can be turned on and the problem solved. It is, however, one of the levers that must be pulled to get us to the desired and required result.
It can start with them, and we’re ready to row in to support.
Wishing you and your family the best of health.
Cheers,
Trevis
