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From Research Participant to Advocate + Beyond

From Research Participant to Advocate Beyond Feature Image

Editor's Note: The following interview is with Jeri Burtchell, a renowned patient advocate with first-hand experience participating in clinical trials. She spreads awareness of clinical research among the public and educates clinical researchers on the needs of the patient. Jeri is also the founder of Partners in Research and Director of Patient Initiatives at HealthiVibe. She regularly speaks and writes about clinical trials.

You wrote a guest blog for Lilly in January of 2013, a few months after your very first appearance at an industry conference. For people who haven’t read the blog or don’t know your story, can you give us a bit of background on how you became involved in clinical trials?

I was diagnosed with multiple sclerosis (MS) in 1999. At the time, there were only 3 drugs available for treating the disease and all of them were injectables. I had a “very aggressive” case of MS according to my neurologist, and, although I started treatment right away, I was continually relapsing. I spent eight years in a constant state of relapse or recovery, and I was needle-weary. My quality of life was so poor I wanted to give up. I daydreamed about suicide.

But then, almost by chance, after switching neurologists I was introduced to the idea of a clinical trial for a new medication. If approved, it would be the first oral treatment for MS. My new doctor was very excited about the study and thought I would make a great candidate.

It was a comparator trial and I would not be at risk of being on a placebo—a huge plus from my perspective. Although there were lots of risks involved, I was already at a point in my life where suicide was a viable option, so while it was scary, it was also my ray of hope.

When you first wrote for us, you also shared some ideas for improving the clinical trial experience for patients. What do you think about how the industry has progressed since then?

I remember when I wrote that, it was my “wish list” and I wasn’t sure how the industry would respond. It was obvious from the interaction with researchers at the Disruptive Innovations in Clinical Trials (Dpharm) conference in 2012 that they were keenly interested in patient-centricity, but implementation was the road block. After a lifetime career of keeping the research participant at arm’s length, and referring to them as “subjects”, just how were they going to immerse themselves in the patient perspective?

Now, three years later, I have seen real progress. Some sponsors are at the forefront while others seem stuck in the old, “comfortable” models, but for the most part I think the industry as a whole is making real strides to include patients.

You began your clinical trial journey by documenting your own experience but became someone who actually influences how clinical trials are run. Can you tell us a little more about this work?

Craig Lipset, Head of Global R&D for Pfizer really set it all in motion when he reached out to me through Twitter to ask for an interview. That led to my appearance at Dpharm where many of the pharma audience (who had dedicated their lives to research) were, for the first time, hearing the patient perspective on trial participation.

One of the people attending the conference was Abbe Steel, who was working with UBC at the time. We spoke during a network break and hit it off so well we continued the conversation over dinner that night. It was obvious to me that she felt passionately that the industry as a whole needed a shot in the arm when it comes to making “patient-centricity” more than a catch phrase.

We stayed in touch and then in early 2014 she reached out to ask if I would want to work with her to bring the patient voice to clinical trials. Neither of us really knew how that would happen, but how could I say no? It meant having a real platform for helping pharma implement the ideas I had been suggesting all along.

Dubbed Director of Patient Initiatives, with Abbe at the helm as Founder and CEO, we launched HealthiVibe, LLC in April 2014. Our guiding premise is that patients should play a more instrumental and active role in clinical studies before they're designed and conducted—and throughout the patient journey. image002-2 There is no “model” for this type of business since the idea of including patients is so new. We are charting new territory and learning what works – and what doesn’t – as we go. We have grown to nearly a dozen employees in less than two years. It is very exciting and empowering to be part of this. I wake up every morning feeling enthusiastic about how we are making a difference.

The accomplishment I’m proudest of to date is our launch of HealthiPerspectives™, which is a measure of participants’ insights regarding their clinical trial experience. It’s a validated, IRB-approved survey that is given during the patient’s closeout visit and allows them a chance to reflect on what they thought of everything from compensation to travel.

From the patient point of view, I was surprised that this wasn’t already being done. I remember the end of that first trial, when all of the tests and questionnaires were done, I was unceremoniously cut loose. It was so anti-climactic to me, after all I had been through, and in retrospect I think this was the piece that had really been missing for me—having anyone care enough to ask for my opinion on the experience.

It gives me goosebumps to know that this is being implemented in clinical trials already, and that something I’d played a role in developing is empowering patients as we speak.

We’ve seen the power of social media in connecting patients to each other and to information and potential treatments. How have you used social media in your own chronic disease and clinical trial experience?

In July, 2014 I was interviewed for an article in the Wall Street Journal regarding the intersection of social media and clinical trials. The piece published on July 30th and made the front page of the paper. Social media, while empowering for patients, is capable of derailing an entire study—years-worth of work—through careless sharing of information. At the very least you can skew the public perception of a study drug by sharing your one-sided experience. I didn’t realize this when I first began blogging.

There’s no way to keep people off social media, however, especially when they are fearful of the unknown that lies ahead in the trial and are seeking camaraderie.

When you live with a chronic condition that keeps you housebound for much of the time, social media may be the only opportunity you have to connect with others. Participating in a clinical trial can add an additional layer of isolation. Not only do those around you not understand your condition, they also have no idea what being in a study is like. It’s only human to seek that connection.

If I had it to do over again I’m not sure I would have blogged my trial, but the point is that nobody comes into a study knowing the impact their social media activities could have.

We need to educate patients on responsible use of social media and sponsors need to provide monitored communities where patients can go to gain the same sense of community with those who understand what they are going through. If you build it, they will come. If you don’t build it, they are going to find their own pathways on which to connect.

Think back to the Jeri Burtchell of January 2013 and all you’ve learned and accomplished since that time. What advice would you give to patients who are where you were then and just beginning advocacy work?

Looking back over my advocacy journey, I’m amazed at all the opportunities I’ve had to grow and share my views regarding the importance of including patients in trial design. I’ve also met a lot of other amazing advocates who are influencing health care in their own ways.

My advice for other patients who want to use their voices to make a difference it would be this: step outside your comfort zone. It can be terrifying to engage with larger audiences, especially if you are afraid of public speaking. But if you push beyond that I guarantee you will grow as an advocate. When you have a passion and a compelling message, there’s nothing you can’t accomplish.

Blog post originally appeared on LillyPad.

Tags: Advocacy,

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