As the National Institutes for Health (NIH) appointed patient advocate for a breakthrough MS study that was recently published in the New England Journal of Medicine, it has become very clear to me the importance and difficulty of recruiting people with chronic conditions into research. Whether we take disease modifying therapies (DMTs), symptom management medications, or use complementary and alternative medicine (CAM) to cope with your disease, we are all the beneficiaries of medical research studies.
Our obligation to give back
It leads me to question our responsibility or obligation to give back to the well of knowledge from which we often dip. While donating our own money or raising funds for research might come under this heading, it is active participation in research projects toward which I am aiming that question.
It’s a hard question to ask of ourselves, one I have asked of myself in the mirror more than once.
First, I believe it is important to understand that not all research studies are drug trials. For a number of personal (and valid) reasons, many people with chronic illnesses like MS wouldn’t want to or may be unable to take part in those trials. Many people shy away from the very idea of being a “guinea pig,” thinking that they might be injured by a dangerous, unproven medicine or (and some think this worse) be given a placebo in lieu of real treatment.
One can be involved in a number of arms of non-pharmacological research, from exercise or nutrition to genetics or quality-of-life issues. I have been a subject in around a dozen studies in my life with MS and only two of them involved medication, none of which were DMT.
Particularly when it comes to issues of research into progressive MS – which all of us will agree lags behind that of the relapsing form of the disease – if we want more data on the topic, we must be willing to involve ourselves in the studies.
An inside view of the recruitment process
As the patient advocate for this most recently published study, I can tell you that I learned much about the process from design and ethics to recruitment and retention of subjects. Every detail of how the study was to be organized was scrutinized and the patient perspective was held in high regard at every stage. From the difficulty one may have at opening blister packs of tablets and time commitments to procedures involved, studies are scrutinized from every angle.
Even if one is quite a physical distance from a research site, there are other options: Online, phone-in, and even written survey studies exist. Here’s a perfect example. A university in Limerick, Ireland is looking for people with MS from around the world to complete an online survey to help them to better understand the barriers and facilitators of physical activity with MS so they can design treatments tailored for people with the disease.
Think of it! You can participate in an Irish study from the comfort of your favorite chair and influence how studies are carried out around the world.
What you need to know about participating in a study
The best way to find out about studies currently recruiting for MS research is on the site ClinicalTrials.gov. A quick search showed 302 MS studies currently recruiting. At a glance you can even see where that research is taking place by using their interactive map feature.
If you are considering taking part in a study or trial, know that the you will be completely informed of the process of the research as part of the required informed consent agreements you will read and sign. Organizations like the International Advisory Committee on Clinical Trials in Multiple Sclerosis and several of its national member organizations “provide perspective and guidance to the multiple sclerosis scientific and clinical community related to planning and implementation of clinical trials of MS therapies and allied topics.”
Pragmatically speaking, it is important to understand that research studies take months to years to prepare, years to complete, and sometimes even decades to fully understand. It’s also important to realize that not all studies have positive outcome.
But like any good pragmatist, we must understand that every “no” is one step closer to a “yes.” Every avenue closed by negative outcome is a road other researchers won’t have to waste time traveling.
Finally, and rather altruistically, we must consider our responsibility to those who will come after us as we weigh the decision whether or not to participate in research studies. I firmly believe that we owe it, not only to ourselves but to one another, to consider participation. I believe that we have an obligation to leave the state of MS understanding in a better place than we found it.
The question is if you believe the same and what you’ll do about it.
Wishing you and your family the best of health.