Call it a healthcare brain trust. About 175 leaders and innovators in healthcare and medical research spent the better part of two days at UC San Francisco late last week, drumming up concrete ideas on how to improve the use of data and technology to deliver more precise medical care. Among the attendees:Margaret Hamburg the head of the Food and Drug Administration; and Francis Collins, leader of the National Institutes of Health.Facebook FB -2.28% Chief Executive Mark Zuckerberg spent about an hour Friday learning about the ideas attendees had brainstormed. Marc Benioff, the billionaire founder of Salesforce.com CRM +0.88%, wrapped up the conference Friday afternoon by introducing the concepts voted most promising by attendees – ideas that included a smart toilet (more on that below). California Governor Jerry Brown also attended the final session and gave his support to the innovators in the room. San Francisco Mayor Ed Lee kicked off the event Thursday morning.
Benioff and his wife, Lynne, are closely involved with UCSF and are giving $100 million to the university for a new children’s hospital now under construction. Zuckerberg’s UCSF connection? His wife graduated from UCSF medical school last year, and Facebook recently named UCSF Chancellor Susan Desmond-Hellmann to its board.
Leading the “OME Precision Medicine Summit” was UCSF Chancellor Desmond-Hellmann, who began her career as a doctor treating cancer patients, rose to president of product development at biotech powerhouse Genentech, and became chancellor of UCSF in 2009. She co-authored a 2011 National Academy of Sciences report that called for transforming medical care by harnessing data from the human genome and other research about disease with information from patients’ medical records. “What we mean by precision medicine is connecting the dots in a new data-driven way so we can better understand disease,” and treat it more effectively, Desmond-Hellmann told the attendees. “I’m looking for a pace change. I know this could happen over decades, but people don’t have that kind of time.” She told the story of a patient she had in the early 1990s – a 28-year-old mother with an aggressive form of breast cancer that took the young woman’s life. The memory of that young mother drives Desmond-Hellmann even today.
Changing healthcare is both difficult and complicated, so the real test will be whether the “action items” agreed on by those at the summit will be brought to life in the future. Among the dozen ideas presented:
-A smart toilet that would take a stool sample, gathering data from a person’s genomic, microbiome (gut bacteria) and other health information.
- An initiative to mine the data from failed clinical trials, to learn from what went wrong and avoid repeating the same mistakes. Law does not allow the FDA to unveil data from failed trials, and it hasn’t been in pharmaceutical companies’ interests to do so. Several participants at the conference, including from pharma, agreed to pursue this initiative.
-Making medical research journal articles understandable to the rest of us, and adding a seal of approval. Patients with specific diseases currently don’t have access to articles in journals like Nature, nor might they understand the medical jargon if they did. This initiative aims to create easier-to-understand versions of articles, and get certified by the Institute of Medicine as accurate.
-A push to develop interoperable data standards for healthcare data, to avoid the age-old “Betamax vs. VHS” standards wars.
-A Bloomberg-like terminal that would pull genomic data from similar patients now housed in servers around the world, and give doctors an ability to look at genomic variations in other patients as a comparison.
UCSF also wants to get the public involved in this journey, and to that end launched a public awareness campaign and website, meforyou.org. It’s challenging, because the website is asking for a general commitment to the idea of sharing information, rather than for anything specific. It may be tough to gather serious momentum when the aim is honorable – not unlike preventing climate change – but the individual steps to take are unclear.
For me, one of the highlights of the conference was listening to NIH head Francis Collins share a story over dinner Thursday night about how sequencing the genome of some very sick twins in Los Angeles had led to a discovery that an existing drug could help them get better. (One of them is on the track team now). Then he pulled out his guiter and played the Bob Dylan song “The Times They Are A-Changin’ “ – with lyrics altered for the gathering.
Here’s a sampling:
“Will we practice prevention like we did under Ike? Will novel disruptions be met with dislike and no end to damn sequestration? Hell no, we’ll all shout, for the future is bright, for the times, they are a changin’.
“Look to the future, the challenge is vast, and all this precision is needed so fast. We’re bold, we’re audacious–not mired in the past. Our propects are truly amazing. So come on you people, let’s go kick some ass, for the times they are a changin’.”
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