In his fantasy tale, “Funes the Memorious,” the Argentine writer Jorge Luis Borges tells of a poor uneducated boy who has a crippling horse-riding accident and is suddenly able to recall in exquisite detail everything that happens to him. He remembers the look of the clouds at dawn on a given day but, overwhelmed by the sheer particulars, associates them with the spray of an oar or the marbling on a leather-bound book rather than with other cloud formations. What he lacks is the ability to make sense of his experiences.
Twenty-first century medicine may seem worlds away from this tale, but according to some, it could be on the brink of a Borgesian moment. If a growing band of health insurers, employers, government agencies, and businesses have their way, many Americans will soon be carrying their own digital version of Funes: a personal health record that captures their entire medical history—every blood test, prescription, diagnosis, possibly every doctor’s note. Soon, it may contain the entire contents of a person’s genome—every SNP, point mutation, and chromosomal inversion. It might even record what they had for breakfast, whether they exercised, and how many hours they slept on a particular day.
“How are we as doctors and patients going to cope with all this data? Not to be too literary, but it reminds me of [that] Borges story,” said Paul Bleicher, founder and chairman of Phase Forward. He was speaking at the second annual Personally Controlled Health Record Infrastructure (PCHRI) meeting, held on Nov. 27 and 28 at Countway Library. The contrast to last year’s meeting was striking. At PCHRI 2006, a stripped-down version of a medical record—essentially, a computer program that allows patients to collect and control all their medical data—was introduced to about a hundred invited guests, who greeted the idea with a mixture of bewilderment and giddy enthusiasm.
Just over a year later, many of those organizations represented in the audience have personal health records in the works or already released. These include federal agencies like the National Institutes of Health and the Veterans Administration; businesses such as Google, Microsoft, and Dossia (a consortium of eight large companies), as well as smaller health care concerns including WebMD and CapMed; insurers such as Aetna; and health care providers, such as New York Presbyterian Hospital and Children’s Hospital Boston, which cosponsored the program. Some of them, including a collaboration between Dossia and Children’s, grew out of last year’s meeting.
As the presenters described their various inventions, it became clear that the first generation of personal health records will be a more robust and versatile breed than envisioned last year. According to the emerging conception, the gathering and storing of personal data will be but a springboard—a flexible platform on which a dizzying array of applications may be placed, each of which may help users get the most out of their data. One of the goals of this year’s meeting was to establish a more elaborate two-part design, consisting of a data-storing platform and an array of applications “that make the data really sing and dance,” said conference co-organizer, Kenneth Mandl, HMS associate professor of pediatrics at Children’s.
He and his co-organizers from Children’s, including William Crawford, Isaac Kohane, Elissa Weitzman, and Patrick Taylor, did not seek convergence on what the two-part structure would look like. “A big question mark looming over the conference was, Will these organizations create a relatively common interface to the personal health data?” said Mandl. Still, there was a spirit of collaboration, sometimes feisty and heated, as participants wrestled with potential problems and issues.
One question raised at last year’s conference was, Who will pay for the records? It now seems that insurers, employers, and government agencies are prepared to assume the brunt of the costs, the rationale being that giving patients control of their health records will improve their overall health and thereby reduce health costs. “Dossia is all about what if we could create a world where the patient was essentially empowered to take control of their health,” said Colin Evans, CEO of the organization. But it is not at all certain that patients want to—or are equipped to—take control of their medical records. Nor is it clear that using a personal health record will make them healthier. Some of the most intense, even impassioned, debate of the meeting swirled around these two issues.
“What I hear is a whole lot of approaches but not a whole lot of focus on the consumer—what’s going to drive them to use this? How do we get to the tipping point of desirability?” asked keynote speaker Doug Solomon, head of strategy efforts at IDEO, a consulting company responsible for helping to design the Apple mouse and other well-known devices.
Lacking an actual patient panel—and there were suggestions that one be included next year—conference participants, patients after all, came up with their own wish list for the personal health record. It included everything from scheduling doctor’s appointments, getting prescription refills, and accessing care teams to helping with medical decision-making, managing a child’s health, and “taking care of my mom.” The overarching goal was summed up at the beginning of the conference by Crawford, director of industry relations for the Children’s Hospital Informatics Program. “It’s about the way patients actually experience the health care system,” he said. “That’s pretty audacious.”
When it comes to actually improving health, the effort may not be bold enough, some said. “Are we really solving the real problem? It’s the health care system that is broken,” said Jamie Heywood, founder of the ALS Therapy Development Foundation and chairman and co-founder of PatientsLikeMe. “Personal health records are not going to fix these problems,” said Heywood. Ten years ago, his brother Stephen was diagnosed with amyotrophic lateral sclerosis (ALS) and wanted to know, “What happens to patients like me?” Heywood said. He and his brothers created a website, PatientsLikeMe.com, where patients with life-threatening diseases such as ALS, Parkinson’s, and multiple sclerosis openly share their experiences with various symptoms and treatments.
Heywood’s experiences pointed to the possibility—raised by other participants—that the real value may come when patients share their personal health records with one another, not just for their own benefit but for the greater good. The CDC is hoping to distribute personal health records to a group of “sentinel citizens,” who would share their information. “It would go a long way to helping us assess the health of the nation on any given day,” said Les Lenert, director of the National Center for Public Health Informatics at the CDC.
Though concerns were raised about privacy—and indeed it elicited one of the most heated debates of the conference—they were more in relation to data being shared with employers and insurers, without the knowledge of patients. “Hippocrates was a genius because he divined what people want—they want to share data but with people they trust. They don’t want to share data that will come back to harm them,” said Deborah Peel, president of the Patient Privacy Rights Foundation.
The privacy issues, though significant, will not derail this fast-moving train, according to Kohane, the Lawrence J. Henderson associate professor of pediatrics and health sciences and technology. “When personally controlled health records actually happen, I think there will be hundreds of thousands, maybe millions, of people for whom the privacy issue takes a back seat to moving this thing forward,” he said.
