Earlier this month, Verily senior product counsel and lead for policy, privacy and information governance, Afia Asamoah, took the stage at SXSW in Austin, Texas alongside Brooke Grindlinger, New York Academy of Sciences; Regina James, 2M Research; and Jennifer Miller, Yale School of Medicine to discuss how data are impacting healthcare, and some of the complexities around how health data specifically are collected, stored, organized and shared. Following an exciting panel discussion, we sat down with Afia to delve deeper into this topic, and address the opportunities for meaningful use of data in healthcare as well as some of the cautions.
Q.How is data changing healthcare and healthcare research, and what are some of the benefits to individuals?
A.Both traditional and new sources of data have high potential and promise in healthcare. If we can harness it in the right way, we can potentially deliver value to people faster. For example, Onduo, our joint venture with Sanofi, provides a virtual diabetes care system for individuals with type 2 diabetes. By capturing meals and exercise and pairing that with continuous glucose monitoring, we can put information back into the hands of individuals so they see the impact of their choices and can make informed decisions about their health.
Q.What regulations exist in the U.S. to protect individuals’ personal health information and what else should be considered?
A.There are a lot of misconceptions about what regulations are in place and to what aspects of healthcare data they pertain. HIPAA is probably the most well-known by name, but it only covers identifiable health information transmitted electronically by most healthcare providers, insurers and healthcare clearinghouses. For this reason, many groups have created supplementary data policies that govern the use of information individuals elect to provide to them. Conversations around some of the remaining grey areas are happening more frequently, and additional state laws are also coming into place. An example of this is the California Consumer Privacy Act, which follows in the footsteps of European GDPR regulation by broadening the definition of personal information and gives California citizens more control over whether it is collected or used.
Some of the questions that our regulatory, clinical data management, product counsel and privacy teams are considering as we shape our own policies are:
- How can we clearly communicate to individuals in our research programs how their data will be used and provide consent? How do we best share updates?
- What new frameworks can we create to address different uses of data and data types?
- How can we foster more conversation across the industry?
- How do we better safeguard information at an individual level and at a collective level?
Q.We know that many people who join research initiatives do so because they are interested in receiving information about their own health. How is Verily working to create an exchange of information in order to ensure that people receive value by sharing their data?
A.The information age is new for all of us, and we’re learning alongside individuals what practices work for them. Research is an integral part of determining that medical products are safe and effective for use, and ensuring that we are creating real solutions that work for real people. But sometimes the benefit is years away. Technology like mobile apps and wearables give us the opportunity to share information with research participants sooner, such as in the Project Baseline Health Study. Participants currently receive certain results including fitness reports, step count and standard blood tests run in a CLIA-certified laboratory.
In order to do this in a medically and ethically responsible way, we have established a committee of participant advocates and thought leaders in clinical medicine, clinical research, bioethics and genetics, who are helping design the policies and processes. We are still in the early stages, but actively incorporating participant feedback into the design of what we hope will be engaging reports and a streamlined process for delivering them. The next challenge? Finding a way to return even more information to more people-- essentially precision information at scale.
Q.Data privacy and protection is clearly a dynamic field. How does Verily prioritize shifting privacy and security practices to maintain the highest standard of protection for the data it collects? How do we balance protection with innovation?
A.Our regulatory, legal, quality and data privacy teams are focused on implementing best practices and policies. We start with where there’s agreement in industry. Then we look for new ways to approach problems and collaborate with experts across biology, chemistry, physics, medicine, engineering and computer science to help create solutions. We also seek input from the FDA and other regulatory bodies to ensure we meet high standards for our products and services.
We strive for transparency - when people share data with us, they should know where it’s going. Moreover, we create opportunities for people to provide feedback regularly, through communities like Project Baseline. The healthcare system can and should deliver better outcomes for patients, and we believe technology can play a critical role in that. Together with individuals, we want to innovate responsibly and effect tangible change. My co-panelists from SXSW are equally passionate about bringing value to healthcare, and I’m thrilled we had the opportunity to discuss the “how” of this important conversation through the healthcare track at SXSW.
Learn more about the SXSW panel by visiting Preventing the Cambridge Analytica of Health Data.