that comes from the federal effort. But just in California, we already have federated databases today. The state runs a death index to keep track of how people die; there’s [a database] where patients have consented the use of babies’ blood spots. There are many resources in the state besides the monetary ones. [Researchers] will probably tie those together going forward.
X: It’s hard enough tying together genetic information. Layering in medical records and other “messy” data is a huge hurdle. Are these first CIAPM demonstration projects using outside data?
AB: These six projects and the two from the previous year didn’t have to work with publicly available data or existing data, but some did, such as the California Kids Cancer Comparison. They’re all generating big data, new data around their project. That’s one of the criteria we wanted to see.
I’m a big fan of using publicly available data, but this is broader. One project [awarded last week] is based at Cedar Sinai [Medical Center in Los Angeles]: a special watch to assess sleep and heart rate and stress levels. Patients will also send in blood by mail for different blood measurements. A lot of measurements going on here.
X: A special watch? Because current wearables are not reliable for rigorous health measurements?
AB: It’s hard to find watches that accurately measure depth of sleep. Stress levels are also harder to tell. Technically there isn’t a commercial watch that has stress and sleep and heart rate all in one right now.
X: The federal PMI has a group working on new wearable technology. Could CIAPM also spur new wearable innovations?
AB: We can’t even say if we’re going to reissue this next year. It’s a year to year decision by the legislature right now. But I think the major industries in California and around world realize that if they want to target the medical field they’ll have to get teams involved as early as possible. It’s nice to use at least some of these slots for winners to showcase others in the state doing great work.
X: You mentioned an 18 month-to-two year timeline to see results. What about the first two projects awarded in fall 2015? What have they produced so far?
AB: One is based at UCSF but runs across the state and uses high throughput screening to diagnose meningitis and encephalitis from cerebrospinal fluid. There are enough data to launch a prospective clinical trial on the use of this test. I’m hoping we’re on track to get [regulatory] approval to launch the test statewide at the end of the clinical trial if it works.
The other project is based at UC Santa Cruz. They’re putting four existing studies together and sequencing [the tumor DNA of] kids with cancer to suggest new drugs or new uses of drugs for these patients. The study has gone through dozens of children, giving suggestions for drugs for every one of these kids. It will take longer to know if the drugs are working or even if doctors want to listen to the advice. It’s ultimately up to them to define treatment regimen for their patients. By 18 months we’ll know if we’re making a difference for these kids or not. My hope is that one or several of these kids are saved by these suggestions.
X: How much would you like to see apportioned in the next budget?
AB: I’d like more. The budget process starts in January, early February. [Part of this answer has been deleted because it contained inaccuracies about the California budget process.]
X: Have you floated a budget request publicly or privately?
AB: Not that I’m going to share with you. [Laughs]
X: CIAPM expects non-state funding, too. Where will that come from?
AB: It’s still to be defined. Private donors who give to nonprofit or academic institutions might get matched by the state. That’s still a concept. A lot of people are thinking about it, but it’s too early to say how it will run right now.
X: What about the grand project of linking everything in the UC health system. Is that still a goal?
AB: It’s totally a goal, but not of CIAPM. That’s just within the University of California, to put all electronic medical records together for research, to improve operations and the care we deliver.
X: Could that also be a “precision medicine” resource for researchers across the state?
AB: That’s the intent someday, that patients can get to their own records, perhaps researchers and entrepreneurs can get to some of this data—de-identified of course. To be clear, we already have demonstrated pulling UC records together [for the federal PMI].
[The federal initiative has tabbed a consortium of California institutions, including several UC centers, to recruit volunteers for the million-person national cohort. Butte is also involved in the California consortium, which is being led by UC San Diego professor of medicine Lucila Ohno-Machado.]
X: We’ve seen with this election that anything can be hacked. Are you more worried now about big health data security and privacy?
AB: There are certainly a lot of hostile actors out there. We routinely go through security audits and make changes as needed. Medical centers have a lot of work to do just to keep up and use state of the art tools. The most important thing is not to fall behind.
[This post contains several edits for clarity.]
