Gimme my %^&* data
Gimme my #$%^ data
Patients' access to information would change the balance of power in healthcare
"America has a strange paradox," noted Financial Times Managing Editor Gillian Tett, who moderated an all-star session on personal health data and patient empowerment at Partnering for Cures, "Gimme my #$%^ data." "It likes to think of itself as the land of the free, empowerment, liberty. Technology gives us the ability to choose in most areas of our lives -- except in healthcare. Are we on the verge of a revolution, of healthcare defined not by the guild of doctors, but by patients?"
Linda Avey, co-founder and CEO of We Are Curious, Inc., says yes. "I started hearing the drumbeat about four years ago of patients wanting to get their data. That ship has already sailed. They not only want to have access to it, they want to do something with it. They want to learn something from it about themselves. The ship has also sailed on companies that can hoard your data. People are going to refuse to accept that. It's really important that companies get that."
Milken Institute Chairman and FasterCures Founder Michael Milken recalled how revolutionary it was when he founded CaP CURE, the predecessor to the Prostate Cancer Foundation, in 1993 and required academic investigators -- who regarded themselves in many cases as competitors -- to share data and results. He noted that there were 200 patient foundations in attendance at Partnering for Cures this year and called for them to write their own "Declaration of Independence" by requiring their grantees to adopt the funders' data policies.
Brian Druker, director of the Knight Cancer Institute at Oregon Health and Science University, readily acknowledged that incentives are often aligned for doctors, researchers, and their institutions to hoard and not share data. "Researchers are driven by their funding environment. We're really small businesses." He is working with tech titan Intel on an audacious effort to link all cancer data by 2020, to realize his vision of being able to quickly sequence and view his patient's genome and identify all other patients with similar profiles to help guide treatment.
Stephen Friend, president of Sage Bionetworks and a partner of Druker's in the Beat AML initiative, also sees patient access to their own data as changing the balance of power in the doctor's office. Mobile health is helping us turn anecdotes into signals that can help patients improve their health and contribute to research, and Sage is playing a prominent role in that by providing the platform for patient data generated by studies using Apple's ResearchKit software. He was careful to distinguish between patients having control of their data and ownership, believing that ownership will perpetuate the silos that we need to break down to accelerate progress.
Ben Heywood, co-founder and president of PatientsLikeMe, sees positive changes happening outside the community of engaged patients as well. Health systems and the biopharmaceutical industry -- even the Food and Drug Administration, with which PatientsLikeMe recently formed a collaboration -- are much more open to patient-generated data. Not so long ago, the conversation was about, "Is this even legal?"
A number of challenges to patients acquiring and sharing their health data emerged:
Privacy and security. While the Partnering for Cures audience is probably less concerned than the average American about the potential risks of sharing personal health data, Tett asked, "Are we in danger of giving people too much data and getting ahead of where consumers are?" Heywood acknowledged that "the language of healthcare has always been about privacy, locking down, protecting. It has a huge impact on how people think and talk about disease." He related his own experience of wrestling with whether to share personal health news with close friends, despite the fact that he runs one of the world's biggest platforms for sharing health data. But he said people should not kid themselves that they have privacy now. "The big data aggregators already have your data. The question is whether patients will have access to it." The key, according to Avey, is to give patients, not doctors, control over what they share and what they keep private.
Quality and analytics. Milken and others emphasized the need to ensure that the patient data being used for research is of high quality, regardless of its source. "We have to have rules of engagement and accuracy. Too much inaccurate information will delay progress." Heywood cautioned the audience against thinking that patient-generated data are by default of inferior quality, and cited a recent PatientsLikeMe/Merck study of sleep as an example of the high-quality, broad, and deep research that can be done quickly and efficiently when patients participate in such platforms as PatientsLikeMe.
Business models. As Avey noted, building business models around hoarding data is a thing of the past. Friend stated that "digital health data is a fungible and non-constrained resource, unlike other assets. It can and needs to flow anywhere it wants to. Sharing data creates value." Milken agreed, saying that we need to keep patient data open-source and simultaneously encourage entrepreneurs to create algorithms and predictive analytics that sit on top of it. Druker chimed in that, in his collaboration with Intel, the company's interest is "in the chips. They don't care if the data is open-source."
Role of government. Tett asked whether government was a help or a hindrance in getting people access to their health data, and the consensus seemed to be that it was largely irrelevant. Milken noted that government typically lags behind innovation and that when it does pay attention, it's typically to slow it down. Druker advocated "putting patients in front of Congress so they can tell their stories about how access to their data has helped change their healthcare."
Avey declared, "The research-industrial complex we have in this country is broken." Milken noted that it is already being disrupted by technology. There are 8 billion mobile devices in the world -- more phones than people. Many countries in developing nations have bypassed the wired infrastructure and gone straight to wireless, and many of them don't have much regulation of research and healthcare. The cost of data storage is dropping precipitously, and the speed of data transfer is increasing exponentially. This group clearly believes that the revolution in patient empowerment through health data is coming.