At Reveles, we are pleased and proud to have many good friends doing great work in bringing hope closer to home for patients in need. Among them is Wes Michael, founder and president of Rare Patient Voice, an organization devoted to giving people living with rare diseases — and their advocates — the opportunity to voice their opinions and help to improve medical products and services.
Wes’ work with Rare Patient Voice has connected him to tens of thousands of patients, caregivers, and advocates across the country. He spoke with us recently about what the people he hears from want and need, and how this might be their time.
Reveles:
How did you get started in this work?
Wes:
I had been in market research for many years when a client approached me about putting together a panel of patients with hemophilia. I agreed to do it, and started out by getting a booth at the National Hemophilia Foundation’s annual conference. We ended up talking to a lot of people at that event, and we learned there was great interest among patients and caregivers in being heard. It all took off from there.
I would travel the country attending events like MS Walks. It was just me at the beginning, but patients would refer other patients, and it grew and grew. That was just seven years ago and today our network includes 100,000 patients and caregivers associated with rare diseases.
Reveles:
Although market research and giving people a voice has been your focus, you’ve talked recently about an interest in connecting people with rare diseases to clinical trials.
Wes:
We’re just starting to get into that. I think it is our obligation to let people know about research that could impact their lives. I’m not going to tell someone to do a clinical trial, but I can tell them about it. People simply aren’t aware of relevant clinical trials, and frankly, that’s killing people.
Reveles:
Even patients who know about a trial may find it difficult to participate. Can you comment on that?
Wes:
When I go to distant patient conferences, I fly. But I’ll meet people there who have driven half way across the country to attend. Some of us are fortunate enough to live in a little bubble where everyone has a certain level of resources. That’s not the case in the larger world. People say, “I can’t fly my whole family to this thing.” And while those people might make the sacrifice to attend a conference every so often, they can’t do that on a regular basis like you would need to to participate in a clinical trial. Travel costs alone are a huge barrier to many families.
Reveles:
And a challenge for sponsors is that patients with rare diseases are, by definition, few and far between, right?
Wes:
Right. Someone recently asked me if I could help recruit potential patients for a project based in Massachusetts. They wanted to know how many patients I knew of who lived within a half hour of Worcester. That’s going to be a very small number.
In market research, too, we have had clients who for very good reasons want to do in-person focus groups in Chicago or Dallas. That’s fine, but limiting. If they would do the research remotely, they could open it up to the entire country. Then instead of connecting with 50 people, they could connect with 500.
Reveles:
And that brings us to the subject of decentralized trials. Are your patients aware of this option?
Wes:
A few people are very knowledgeable, but by and large, people know very little at all about clinical trials. I don’t think the word is out. And we should never assume that people are aware. We should work at getting the word out.
There are already so many factors that rule people out of clinical trials: Do they have the right condition? Are they taking the right medications? Do they have any disqualifying comorbidities? And then there’s this: Do they live close to one of the research sites? Now, at least we can remove that last filter.
Reveles:
But how many people have access to the tech required to participate in a decentralized clinical trial?
Wes:
The key is the smartphone. That can be anyone’s computer. If you can make your research work on a mobile device, the whole world is yours. Everyone seems to have a phone.
Clinical trials don’t need to depend on people moving or traveling. We have artificially allowed distance to be a barrier. We don’t need to do that. We’ve got the technology. Let’s use it.
