Patients are more than just data points

At the end of 2017 I participated in an exercise study that would look to see if exercising would help delay the onset of Huntington’s Disease (HD). I was happy to participate in research and give back to the community since I thought it could help researchers learn more about the disease. Plus, I was already exercising three to four days a week, so this provided more motivation. It was during this time where I learned how studies need to stop treating patients as data points and start treating us as people.

I don’t recall the exact criteria to participate in the study, but I do know it wasn’t as stringent as most other studies. Since I am not diagnosed with HD (I am pre-symptomatic) I cannot take part in any interventional trials. This study was observational, meaning certain outcomes were being measured (i.e., exercise) and no drug was being delivered to participants.

Working with participants

I was looking back through my email at the interaction I had with the research coordinator and made an interesting observation. I was the one who started each conversation and checked in rather than the other way around. The only time the study coordinator reached out to me was to come back to finish the study but besides that I felt alone on an island to care for myself. I understand that everyone’s needs are different, but even a generic mass email to all participants with an update or checking in can go a long way.

Providing results to participants

The one thing I wish was to receive the results of the study. Even if the study didn’t show how exercise helps delay the onset of HD, it would have been great to at least be shown the results or receive a link to the publication. Letting the patients know about the results is something that all research studies should require. Without the patients, there are no studies! I bring this up after learning from a good friend that he learned about the failed results of the study he participated in from an article instead of from the company. I know that this isn’t what usually happens, but it is something to acknowledge and learn from. It is even worth thinking about sending out a pre-approved statement to community members around the same time as the company’s quarterly investor call.

Put yourself in the shoes of a patient for one moment. If you were to take risks by participating in a study that wasn’t guaranteed to work and then wasn’t informed about the results from the company themselves, how would you feel? I am sure the answer is you would feel pretty upset and perhaps even have some resentment towards companies.

I know it isn’t easy to give bad news but we need to be comfortable feeling uncomfortable at times. If we don’t have these important conversations with the community, then we aren’t going to be able to advance medical research and find effective treatments or even cures for rare diseases. So the next time you are planning or running a clinical trial, remember that there is a person behind each of those data points.