Verily Advisory Board series: Linda Avey discusses health data sharing & ownership

This week, we are introducing the Verily Advisory Board, an evolution of our science board, to inform and challenge our strategic direction. We’re pleased to have a group of advisors with such varied expertise covering engineering to biology, digital medicine, behavior, patient advocacy and healthcare delivery.

One of our new advisors is Linda Avey, co-founder of 23andMe and Precis.ly. Linda has been a pioneer in the field of personal genetics and has become a leading advocate for health data ownership by individuals. As a sample of the kind of clear and helpful advice that we expect from this esteemed group, I’ve invited Linda Avey to share her thoughts with us on some important issues and considerations facing health technology companies today.

Q. You have been a strong advocate of interrogating human biology for learning about health and disease, and you have championed return of information to participants in research. What made you so interested in this issue?

A. I've advocated for the right of individuals to access their personal data, including their genomes, since co-founding 23andMe 12 years ago. Since then, I've observed how people who have been diagnosed with an illness are often eager to share their data in hopes of finding clues to causes and treatments. Parents and caregivers are also relentless in their search for answers. By giving people a way to productively share their information, and make them partners in the research process, we'll make progress faster. This is especially true as we move into the Precision Health era, in which personal data are essential to figuring out how we tailor health strategies at the individual level. This will only come about through patients armed with their data.

Q. What are you focused on in your own work?

A. At Precise.ly, we're focused on the 165 million Americans who've been diagnosed with chronic diseases, starting with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), which affects over 1 million people in the U.S. We provide patients personalized genetics reports that will begin to paint the complex picture of how their genes are interacting with their environment, leading to these chronic conditions that will require a targeted approach – including diet, supplements, drugs, environmental modifications – to solve.

Q. What are your hopes for Verily's contribution to the biomedical world over the next few years?

A. In order to solve complex diseases, we need to examine the human system as a biological whole. The comprehensive scope of Verily's Project Baseline Study – longitudinally gathering data from thousands of people from a multitude of sources, including wearables and blood tests – creates a new model for studying the human condition that is entirely needed. My hope is that this project leads to other ideas and inventions that enable capturing comprehensive health data more efficiently. There's no getting around the fact that we're still in data gathering mode. All discussions around AI, machine learning, etc. are premature in the context of health until we've assembled the necessary data. Unfortunately, this movement is not going to come from within the health system – electronic medical record (EMR) data are not adequate representations of our overall health. Verily can help lead the way in creating systems that gather data directly from individuals.

Q. Based on your experience in cutting edge technology applied to health, what are the main issues that you see that could derail companies like Verily?

A. Cutting edge digital health technologies often go hand-in-hand with the generation of data. Concerns over personal health data privacy and ownership, and how the media can twist these issues to serve their own purposes, continue to challenge the field. Part of the solution is making sure individuals (i.e. patients, consumers) are stakeholders in these big data efforts, giving them a voice and a hand at the controls. It's incumbent on those of us who run consumer data platforms to design data sharing functions in ways that are easy for consumers to understand and manage. We all need to focus on building trust with the public, something that's been eroding, particularly in the past few months.

Q. Where do you believe the issues of privacy and confidentiality are going in terms of public policy?

A. Issues facing social media companies could be driving the US government toward privacy regulations similar to the EU. I'm worried this policy shift could impede health data sharing and openness, which will slow research progress. It goes back to my earlier point – individuals need to be the ones deciding where and how their data are shared and with whom, not companies, researchers, or politicians. Attitudes will also change if individuals are able to benefit financially from sharing their data – wealth derived from our personal data is being concentrated in too few hands and companies. All of us in Silicon Valley need to be open to discussions with regulators and hopefully arrive at workable solutions that share the resulting value with individuals.

Q. When you think about a person controlling his or her own health related data, what are your thoughts about the role of family and clinicians in this mix?

A. Health data are becoming a currency that will have increasing value to researchers, biopharma companies, and health providers. Transactions around data will become commonplace. For individuals who depend on caregivers, their support will expand to include data management (small example – I hold on to my mom's 23andMe data in the event it becomes useful in her care). Clinicians will become experts in particular data types – their valuable insights will be linked to an individual's data in a very direct way, with actionable recommendations tied to it. Precision health will be data-driven. Hopefully Verily can help drive us toward this future.

Posted by Robert Califf, MD; Advisor, Verily; Vice Chancellor for Clinical and Translational Research, Duke University; Former Commissioner, US Food and Drug Administration