Epic’s Faulkner Shares Charitable Foundation Plans
In an interview with Modern Healthcare, Epic founder/CEO Judith Faulkner reveals that she will leave much of her wealth to a specially created charitable foundation that will operate and fund not-for-profit organizations in healthcare and other areas. The 71-year-old Faulkner says that almost all her shares of Epic stock will go to the foundation upon her death, or sooner if she chooses.
The plan is also designed to keep Epic private. “My stock will go to the foundation,” Faulkner said. “The foundation will control the stock. This plan is designed to preserve the company as a private company forever.”
Faulkner, who has an estimated worth of $2.8 billion, says she never wanted the money personally or for her family and wonders, “What would you want with all that money? It doesn’t seem right and I can’t tell you why.”
What’s not to like about Faulkner’s values or her plan?
I am a clinician and a clinical trialist. Medical research in some form or another (performing it, consuming it, reviewing it, editing it, etc.) occupies much of my time. Therefore, you can imagine my excitement while watching Apple’s product announcement yesterday when they introduced a new open source software platform called ResearchKit. Apple states ResearchKit could:
“revolutionize medical studies, potentially transforming medicine forever”
ResearchKit allows clinical researchers to have data about various diseases collected directly from a study participant’s iPhone (and perhaps other devices in the future — see below). The software is introduced as a solution to several important problems with current clinical studies, such as:
- limited participation (the software allows everyone to participate; anyone with an iPhone can download a specific app for every study they want to participate in)
- frequent data entry (patients can enter data as often as required/desired, rather than only at limited opportunities such as hospital or clinic visits)
- data fidelity (currently-used paper patient “diaries” are prone to entering implausible or impossible values — the iPhone can limit the range of data entered)
Specifically, the website states:
ResearchKit simplifies recruiting and makes it easy for people to sign up for a study no matter where they live in the world. The end result? A much larger and more varied study group, which provides a more useful representation of the population.
This is a bold claim. We’ll see below that it doesn’t yet ring true.
For now, the answer is “we don’t know”.
But… the question is very important and worth tracking over the coming months. Let’s not assume that open source will equate to “open”.
What is ResearchKit?
Apple’s press release provided an overview of ResearchKit:
Apple® today announced ResearchKit™, an open source software framework designed for medical and health research, helping doctors and scientists gather data more frequently and more accurately from participants using iPhone® apps. World-class research institutions have already developed apps with ResearchKit for studies on asthma, breast cancer, cardiovascular disease, diabetes and Parkinson’s disease.
…With hundreds of millions of iPhones in use around the world, we saw an opportunity for Apple to have an even greater impact by empowering people to participate in and contribute to medical research,” said Jeff Williams, Apple’s senior vice president of Operations. “ResearchKit gives the scientific community access to a diverse, global population and more ways to collect data than ever before.”
Many members of the research community have had high praise for ResearchKit. For more details and perspectives about ResearchKit, see the list of articles appended at the bottom of this post.