Can direct-to-consumer expertise inform precision medicine? That was the question posed to the panelists of the opening plenary at FasterCures’ Partnering for Cures conference in San Francisco, held Nov. 14, 2017. The answer was a resounding “yes!”
Deloitte Consulting’s managing director and FasterCures’ former executive director, Margaret Anderson, moderated the session, featuring panelists Silas Buchanan, co-founder and CEO of the Institute for eHealth Equity; Eric Dishman, director of All of Us Research at the National Institutes of Health; Kathy Giusti, founder of the Multiple Myeloma Research Foundation and co-chair of the Harvard Business School (HBS) Kraft Precision Medicine Accelerator; and Christine Lemke, co-founder and president of Evidation Health.
The plenary opened with Anderson taking the audience through the history of the many disruptive innovations that have come to bear in the last several decades, from floppy disks to iPhones to artificial intelligence, specifically highlighting the way in which customer personalization has become the norm, such as with services like Rent the Runway and Birchbox. “What does the future look like with regard to medicine and health care?” Anderson asked the panelists.
Dishman from All of Us began the discussion by setting the ideal of a “holistic, longitudinal health record.” Not currently in existence, this record would leverage an ever-expanding array of real-world evidence and wearable technology data to capture the majority of life that is not occurring in a clinical environment. He highlighted the possibility for such a record to accelerate research.
Lemke picked up on Dishman’s thread of wearables to discuss her background as a technologist coming into the health-care space. She was excited to leverage the types of data – wearables, online behavior data, and search history – that don’t meet clinical rigor but still hold potential for phenotyping conditions and facilitating behavior change. For example, this type of data could be used to identify moments in time when a person is open to making behavioral and lifestyle changes that would support better health.
Giusti outlined her work with the HBS Kraft Precision Medicine Accelerator. She framed patients as consumers and underscored the need to seek to meet their needs. Through the Harvard initiative, five cancer foundations learned from tech giants how to better serve their customers (i.e., patients).
Buchanan and Dishman noted their respective efforts to engage underserved populations and communities of color. Buchanan highlighted the need to engage with the “grasstops” or mid-level community leaders as brokers of trust in communities that may be disenfranchised from the medical system. Dishman acknowledged the trust barriers that All of Us faces with communities that have faced prior abuses in research. “We are over-recruiting those who have been under-represented and on the margins of the traditional health system,” Dishman said.
Connecting back to Lemke’s description of the huge data sets that are manipulated by advertisers and sellers to encourage and predict consumer behavior, Dishman outlined some of the ethical boundaries that his team is facing in the All of Us recruitment. “What are the ethics of employing the engagement and retention strategies that tech uses in a health-care space? For us, we reach out to them, invite them to participate, but at what point do we cross a line into coercion? Opting into a tech app is not the same as consenting to medical research. Consent in our setting must be truly informed.”
But the lessons that healthcare can learn from big tech continued to come up. Lemke encouraged ease of access: “Don’t discount convenience, make it as lazy a possible.” Giusti shared a vision of a future where a disease foundation could walk with patients through their full journey, using data to match them with the right care at the appropriate time.
Cross-sector collaboration is key to these efforts. Coming from industry, Dishman acknowledged that he entered his current government role with a fair amount of skepticism. Nonetheless, he was impressed by the enthusiasm he found among career federal staff to be part of innovative change: “You can teach an old dog new tricks.” Lemke shared how patients are eager to engage, and she welcomed the richness and quality of responses her organization received when asking patients for insight and hypotheses about their health.
It is hard to talk about disruptive health-care technology and not get stuck on the issues of trust and privacy. Lemke encouraged a reframing of the conversation to be one around transparency rather than trust. As an example, she said that while many users do not “trust” Facebook, they are still willing to share a tremendous amount of data with the organization. She encouraged transparency around the intentions for the use of data and limitations around their use as a means to increase engagement and sharing.
To close the plenary, Anderson gave each panelist a proverbial “magic wand” and asked what their wishes were. Dishman wants to educate underserved communities on the power of precision medicine, Buchanan wants to use technology to close rather than widen health disparities, Lemke wants to bring the full expertise of technologists to bear on solving health problems alongside traditional health-care professionals, and Giusti wants to have better sharing of best practices for engagement.