Dana Lewis has been a vocal proponent of the empowered patient movement and has assiduously chronicled her efforts in managing her Type 1 diabetes including building a better alarm for her continuous glucose monitor when traditional medtech manufacturers gave her unsatisfying answers.
On Friday, at the annual Stanford Medicine X conference at Stanford University in California that kicked off Friday and continues through the weekend, Lewis announced a new role for herself: the patient as principal investigator.
With the Rise of AI, What IP Disputes in Healthcare Are Likely to Emerge?
Munck Wilson Mandala Partner Greg Howison shared his perspective on some of the legal ramifications around AI, IP, connected devices and the data they generate, in response to emailed questions.
The study/project funded by Robert Wood Johnson Foundation is called”Learning to not wait: Opening pathways for discovery, research, and innovation in health and healthcare.” For the next 18 months, the project aims at studying data and innovation coming out of the diabetes community with a goal to eventually identify its needs and then create a resource framework that can help to scale such a community patient effort.
“This is significant because as patient I am the principal investigator of the project … and that project starts today,” Lewis declared to loud cheers and applause from the audience. ”
The genesis of the project occurred when Lewis was approached by Eric Hekler from Arizona State University at another conference who posed the tantalizing question to her: As a community, the diabetes patient group has achieved a lot — even a do-it-yourself-artificial-pancreas — but what more could be achieved if the community collaborated with researchers?
To that end, the project will have an on-call data science team that can answer thorny questions that may bubble up from the diabetes patient community who are DIY researchers in their own right. In a blog post, announcing the project Lewis points to some of these questions:
A Personalized Approach to Medication Nonadherence
At the Abarca Forward conference earlier this year, George Van Antwerp, managing director at Deloitte, discussed how social determinants of health and a personalized member experience can improve medication adherence and health outcomes.
- How does sensitivity change during growth spurts, during periods of inactivity, or when changing insulin types?
- What are some of the most successful mealtime insulin dosing strategies? Etc.
The project will also allow patients to submit a research question and have that research be done.
Other than having a data science team on board, the project also aims to document the barriers that patient-led research runs into in general and then more specifically in turning that research into scientific knowledge. And then to find solutions.
Perhaps most importantly, the project will create a tool-kit type resource that can help those new to DIY to innovate. Lewis envisions beta testing with two or three other patient communities, to obtain feedback and roll these new innovations out quickly.
On stage at Stanford, Lewis credited her interest in DIY research and tinkering to her parents who would encourage her to go up by herself to the concession stand as a child at a local sporting arena in Alabama and buy her favorite treat: crushed ice. If she didn’t ask for it herself, she wouldn’t get any.
Not surprisingly when the medtech manufacturers weren’t building a loud enough CGM alarm, she decided to get up and ask for one and when they didn’t she found a way to build one herself.
“This was a fundamental experience for me growing up not just because I got crushed ice and that was cool but also because later when I became a patient I realized that was one of the cardinal behaviors that allowed me to succeed and get what I need as a patient,”
Photo: Gam1983, Getty Images
