It has been 30 years since I opened this one credit card billing statement, but I’ll never forget the moment of seeing an amount I couldn’t pay, for stuff we hadn’t bought.
It turned out to be one of two such statements, and the second was three times larger than the first. Sure enough, two credit cards were missing from my wife’s purse. We eventually found out that they had been stolen from our locked car while parked in a nearby town. My wife, who grew up in a rural and trusting area of Illinois, had covered her purse with a towel beneath the dash of our car. That didn’t fool the thieves, who apparently had a nice time at nearby retail stores with their morning’s work.
You know this is an old story, because the thieves had to steal actual plastic. No longer – hackers can access millions of card numbers without breaking into anyone’s car. But for us, the lesson was we could never again trust the mighty towel to protect us. It was silly to trust it, but this incident sensitized us to the importance of being vigilant, protective and careful with our cards. It impacted our trust level forever.
In healthcare, trust is the bedrock, whether in doctor-patient relationships or more broadly. And when you talk about broad and ambitious, there’s little that compares with the Precision Medicine Initiative, and the plans for the PMI Cohort Program, which seeks to extend precision medicine to all diseases by building a national research cohort of one million or more Americans.
The National Institutes of Health is taking the lead on building the cohort program, said Kathy Hudson, deputy director for science, outreach and policy at NIH. In speaking at the recent HL7 Policy Conference in Washington DC, Hudson highlighted rapid advances in the speed of sequencing the human genome (it took two years to do it only 10 years ago, but it takes less than a day today), as well as drastic declines in the cost ($22 million only 10 years ago, now only $1,000 to $5,000 today).
The PMI Cohort Program has lofty goals. It’s expected to be “a participant-centered, data-driven enterprise supporting research at the intersection of human biology, behavior, genetics, environment, data science and computation, and much more to produce new knowledge with the goal of developing more effective ways to prolong health and treat disease.”
The goal of the cohort is to have the data available in real-time to researchers, with those million or so Americans serving as active participants in the process. At the same time, “We’ll have to be mindful about maintaining trust by maintaining privacy and security,” Hudson said.
Indeed, the key to gaining buy-in from one million participants is ensuring that the data will be secure, that they’ll have access to their information and the findings of the research, and that results could be directed to researchers chosen by the participants, according to Deven McGraw, deputy director for health information privacy at the HHS Office for Civil Rights.
OCR has developed 29 principles “grounded in 10 fundamental assumptions of how PMI will operate,” said McGraw at HL7’s policy conference. That’s a start, but it’s only a start. Ensuring privacy will be crucial in building, and maintaining, trust.
Initiatives such the PMI are grand in scope, technology intensive in nature and expensive to deliver. The potential payoff could be huge, with the hope that medical care can be delivered with precision to specific individuals, based on hard evidence and genomic intelligence, rather than with the shotgun approach that’s used currently.
A key in advancing this grand vision is patient control and ownership of their data. While the PMI assumes this will happen, the healthcare industry will need to become ardent supporters of the notion that patients own their own data.
That’s still slow to occur. The healthcare industry is among the most aggressive when it comes to issues related to data collection, access, and privacy, but the future of health data management lies in turning data ownership over to patients, contends Robert Rowley, MD, the chief medical information officer and founder at Flow Health in San Francisco. The ability to capture and share a complete patient data profile can impact quality of care, he believes.
The healthcare industry has been slow to acknowledge that patients have long-held rights to health information privacy, says Deborah Peel, MD, founder and board chairman of Patient Privacy Rights, an Austin, Texas-based organization that advocates for patient control of personal health information. IT systems, she believes, will need to play a key role to protect both the privacy of individuals while enabling research across millions of people simultaneously.
To ensure that, and to give the Precision Medicine Initiative the best chance for success, trust must be absolutely guaranteed for participants. Without that bedrock, much potential benefit will be jeopardized.
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