The importance of patients participating in clinical trials can not be underestimated. Just ask Alicia Staley, the Vice President of patient affairs at Science 37, who believes, “It is our obligation as patients, at the end of a treatment journey, to turn around and hold the hands of others.”
At Your Autoimmunity Connection we have long been talking about harnessing the power of patients’ real experiences in order to teach them how to better care for themselves while also lifting up their fellow chronic disease warriors. In light of our mission to reimagine research, diagnosis, and treatment of autoimmune disease, the patient voice is invaluable.
I was excited to meet a fellow visionary to this goal when I was introduced to Science 37, a company that has not only recognized this power of the patient voice but is also using it to radically reshape clinical trial recruitment – moving science forward, at last!
Science 37 was formed in 2014 with a mission of “accelerating biomedical research by putting patients first”. Since then, the company has worked to simplify clinical trial participation by bringing trials directly to patients’ homes and local healthcare systems.
Overcoming Existing Obstacles
In the current state of research, clinical trials take a long time and drug development is expensive.
→ Drug development takes an average of 15-18 years, with the average clinical trial running 6-9 years. Failure rates are high, recruitment failure in particular.
What’s more, the pervasive pattern seems to be one of high subject interest but low participation with a lack of diversity in subjects.
→ Less than 30% of patients live near a clinical trial site, and it is currently estimated that only 5% of participants represent minorities.
Science 37 analyzed these startling statistics and asked “Why?” They pinpointed distance, awareness and trust as crucial factors for patient access. Then, they developed a solution.
Streamlining the Process
While the traditional model of clinical research is investigator and site-based, Science 37’s model puts the patient at the center. By bringing trials to patients, enrollment and subsequent processes may be accelerated. With this newly streamlined process, we may be able to redirect more resources towards rare diseases that have previously been granted less attention.
Implementing the Solution
How does this “streamlining” actually happen?
Science 37 has built NORA (Network Oriented Research Assistant) to connect patients with both trial physician investigators and the Science 37 team.
The goal is to turn more patients into subjects, by recruiting people over a broader geographic reach and making participation in the trial largely virtual. Subjects travel less (or not at all), using teleconferencing to meet with trial investigators. Drugs are shipped to the subject, and data is collected using the NORA app.
NORA personalizes the process of clinical trials – investigators can easily customize trials, and patients can digitally complete sign-ups, pre-screening, consent forms and more. At the end of a trial, results can even be exported for FDA review.
Delving Deeper
To get a better understanding of their work, I recently sat down for an interview with Alicia Staley, Vice President of Patient Affairs at Science 37. As a 3-time cancer survivor with an extensive engineering background, Alicia understands the obstacles patients face in seeking clinical trial involvement, and applies her skills and passions to improve the patient experience
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How does NORA work?
Alicia described NORA as a clinical trial in your hand and an ecosystem based around the patient. Essentially, prospective subjects utilize the NORA on a phone, and the platform enables customization for each trial and subject. Science 37 believes that reducing some of the barriers to clinical trial participation will translate to higher subject recruitment and retention rates.
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What is unique about the Science 37 approach?
Alicia pointed out that Science 37 avoids a “cookie-cutter” approach. Rather, they rethink existing models and practices, and integrating both telemedicine and a holistic systems view of the body in their adaptive approach.
In developing their unique meta-site, user-centric model, Science 37 collaborated with clients, investors, partners, supporters, and others shown below:
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What has been successful, and what directions do you hope to take in the future?
Science 37 has already incorporated patient-generated data to better understand the needs of the community, and address how clinical trials can fill these needs.
The Science 37/NORA model has already demonstrated itself to be faster than the average traditional site, with up to an estimated 50% savings in enrollment time.
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What excites you about coming to work each day?
Science 37 represents not only an opportunity to do clinical research, but to engage directly with patients. Alicia admits that working with patients presents a different challenge every day, but this is part of what makes the job exciting.
“Small advocacy can bring big changes.”
Alicia sees her advocacy as an opportunity to do something special, unique, and impactful, and as she reflects upon her work with Science 37 she can already see positive changes put in motion.
Having survived cancer three times herself, Alicia spoke with conviction, passion, and a strong sense of purpose about the patient-centered mission of Science 37 and her role within the company.
Why Science37 is Different
Many companies claim to value “putting patients at the center”, but few seem to actually implement this concept, with patients taking pivotal roles in the organization. Science 37, however, is one of these few.
Similar to Alicia, Liza Bernstein is another patient advocate, who serves as the manager for the patient engagement program. Additionally, Liza runs one of Science 37’s new initiatives called the Clinical Research Advocacy program, which utilizes the stories and voices of advocates such as Emily Bradley, Jamie Holloway, and Casey Quinlan to help empower patients in their self care journey. Having personally met many of these advocates at Stanford Medicine X, it is hard not to endorse their heartfelt work.
It was invigorating to find that the same spirit of empathy, open-mindedness, and innovation central to our work at Your Autoimmunity Connection is at the core of another company’s mission. Collaboration is key!
Interested in learning more? Check out Science 37 in the news:
