Today, we're excited to hand the 'Mine mic over to Amanda Sheldon, who for close to a decade was marketing and communications lead at Medtronic Diabetes and worked closely with our D-Community during that time.
In October, Amanda joined the LA-based startup Science 37, aimed at bridging the gap between the patient community and clinical trial researchers through mobile technology, instead of having these studies tethered to a fixed location as they've traditionally been setup. This two-year-old startup has been in the news recently for scoring $38 million in venture capital funding, and it's intriguing to think about this shift of bringing clinical trials to where the patients are, instead of the reverse.
We were thrilled to hear how much our collective voices played a role in Amanda's move to this innovative, patient-focused outfit.
Without further ado, here's Amanda...
A Guest Post by Amanda Sheldon
I am so excited to have the opportunity to ask the Diabetes Community about your perspectives on how to change the clinical trial process.
When I reached out to Mike and Amy here at the 'Mine a few weeks ago to tell them about my new role at Science 37, I knew one of the first things I wanted to do was get their feedback and insights on what Science 37 -- and the industry -- could do better for study participants. Mike immediately responded with: “Why not just ask our entire community?”
“Of course!,” I thought, “That’s a no-brainer.”
For those of you who do not know me, I spent the last seven years at Medtronic as a public affairs specialist. This role is where I created many patient engagement efforts, starting with Medtronic’s first foray into social communications, The Loop blog, in 2011. From there, I created social communities on Facebook and Twitter, founded and ran the Diabetes Advocate Forums, and worked with multiple patient advocates and advocacy groups.
The Diabetes Online Community (DOC) was of course a pivotal part of that, and I learned a great deal from the PWDs (people with diabetes) involved.
From large, intense discussions on product design and marketing “do’s” and “don’ts” to hearing perspectives on how companies can work with the community on education, awareness and advocacy, my interactions with DOC members really influenced the programs and platforms I put in place to help the company interact with and support the community.
I could fill a notebook with all I learned from the DOC during this timeframe. One of the most important lessons, though, was to be willing, as a brand or company, to have an open dialogue with the community and to get feedback early and often.
I learned that no detail of the development process is too big or too small to get feedback on, and that only by walking in the other’s shoes can you actually improve the patient experience. From that emerged a philosophy that has influenced how I work with patient communities: that when something appears to be a “burden,” it is really an opportunity to make a change that can improve someone’s life. For instance, a customer service issue or complaint really represents an opportunity to help someone in need. In the same way, a product design issue is really an opportunity to continue to iterate to reduce steps or complexity.
Someone once told me, “We don’t often talk about burden, because we don’t want to remind people of the burden that diabetes places on their daily life.” Yet burdens are what patients think about most, and look what addressing those burdens can do to advance science and technology!
One of my good friends and former colleagues, Lane Desborough, shared an article once on the 600 daily tasks that a child with diabetes deals with on a daily basis. This is one insight that spurred him and (Artificial Pancreas startup) Bigfoot Biomedical, as well as Medtronic, to further science and advancements to create a closed loop system.
That line of thinking is what led me to where I’m at today.
During Medtronic’s last Diabetes Advocate Forum in April 2016, a key discussion point was the clinical trial process. How could we build more awareness? How could outcome measures important to people with diabetes, like quality of life, be incorporated into study designs? Why couldn’t people with diabetes be more involved in the process?
While working with the JDRF this summer, I learned about their efforts to build awareness and make connections for people who want to be in clinical trials. In fact, the JDRF just rolled out in July the Clinical Trial Connections tool, which is a great resource to simplify the discovery of trials. I was energized by thinking about how participating in clinical trials is the ultimate act of volunteerism – furthering science, helping to discover cures, and bringing new advances to people, everywhere.
Then I met Noah Craft, the CEO of Science 37, a company founded by physician-scientists who wanted to make it easier for people to participate in clinical trials and ultimately to accelerate biomedical discovery so new treatments could be made available faster to the people who need them most. He and co-founder Belinda Tan are both physicians with experience in telemedicine and clinical trials. As scientists, they wanted to be able to test their own ideas in clinical trials and knew that many other researchers had the same dream. The problem is that they were limited by the fact that most patients don’t live near a major research center. Two years ago while consulting for a large pharmaceutical company, they learned that the entire industry shared in this problem.
In a sense, it was a patient access problem for them all.
Science 37 wanted to create a way for all the patients who want to take part in trials to connect with the researchers who are running the trials. So, Science 37 began with the simple question: “What is best for the participant?”
As many in the Diabetes Community know all too well, clinical trials are designed around research centers and participants may have to travel several times a week to distant clinics. Often, people can’t even participate at all because they do not live near a research site. This isn’t good for people who want to participate, and it isn’t good for the science, since only certain populations of people may get studied which may not be a true representative sample.
Science 37 designs trials around the patient by leveraging mobile technology and telemedicine to connect participants with our physician-researchers and study staff, anytime and anywhere throughout the research study. We work with a network of physicians across the country and across specialties (e.g., neurology, dermatology, oncology, psychiatry, rare diseases across multiple therapeutic areas) and connect them to people who want to participate in their homes, reducing the need to travel. In addition, participants can stay under the care of their local physician while in the trial.
My new role as Vice President of Patient Engagement involves many things, but the most important, in my opinion, is ensuring that the voices of participants and their caregivers are heard throughout the trial process – from study development with our sponsors, to recruitment, to trial participation and on into completion. My aim is to bring the voice of the participant into everything, whether that is trial recruitment, communications, or the development of our technology platform, NORA (Network Oriented Research Assistant).
In addition, I will be working with advocacy groups, and other groups in the industry who are trying to transform the clinical trial process.
But enough about me. As I said at the beginning, I’m writing this because I’m looking for your help within the DOC.
So here’s where I open it up to you: What can we improve about the clinical trial process? How can we help you? Are there better ways to build awareness? What can we do to better educate patients about the clinical trial process and about getting involved? Have you ever participated in a study? If you have, what did you like or dislike. If you haven’t, why not?
I put these questions forward as the beginning of a discussion – a discussion that I hope that can help Science 37 and all scientists create a better clinical trial process that can ultimately help deliver new and better ways to manage, treat and perhaps one day cure diseases like diabetes.
Thank you in advance for any and all feedback either through the comments, via email at email@example.com or @ams9 on Twitter. I feel truly blessed for all that I have already learned from interacting with this community.
btw, if you peruse the participants section of our web site, you will see that we currently are not running any diabetes studies, but with all my passion for curing diabetes, I hope that will change in near the future.
Thank you for the update and the ask, Amanda, and we look forward to seeing how Science 37 develops!