I awoke on the morning of March 12 (Daylight Savings Time) unfazed by the hour I had lost because I was already in the future. More specifically, I was in Austin participating in discussions about the future of health care.
It was my first visit to SXSW Interactive 2017 and the whole experience exceeded my expectations. I’ve attempted to coalesce my time in Austin into a coherent review, using my new understanding of the limitations of time and space. This is Part 1 of 3.
Monday, March 13 - Collaborative Innovation in the Digital Health Age
My experience at SXSW was not linear. In fact, the tone for the entire four days was set on my next to last day there.
The session featured a discussion with Alex Gorsky, Chairman and CEO of Johnson & Johnson and Ginni Rometty, Chairman, President and CEO, IBM. The discussion was moderated by Clay Johnston, Dean of the Dell Medical School at UT Austin.
Despite rarely descending below a 10,000 foot view of the current digital health landscape, it was encouraging to see two leaders from heavyweight institutions suggest that the solutions of the future don’t necessarily require massive administrative oversight to implement. As Gorsky said, “[At Johnson & Johnson we] want to empower agencies like the NIH, industry and others to work collaboratively.” The panel’s vision for a tech-driven personalized medicine could be achieved through:
- A strong public cloud, which likely consists of several distinct clouds with the ability to share data across each instance. That public cloud would build in considerations of HIPAA compliance, GxP quality guidelines and regulations, as well as quality management.
- A layer of AI/data analytics that can sit on top of that structure, identifying things that can jeopardize our health by blending precision medicine with clinical data
- A strong policy that protects the insights generated by the owners of these public clouds as they leverage data analytics
- An emphasis on transparency with the respect to new insights and the ability to use the data amassed in the public clouds to drive population health
- A way for providers to easily plug into this infrastructure without overburdening them with administrative duties
In this vision, the panel suggested self-insured companies are the best-positioned to move forward on this agenda. Rometty pointed to the Health Transformation Alliance as part of a movement to galvanize this group.
It was very interesting to hear both Rometty and Gorsky champion (several times) more and better collection of behavioral data as a key to make this vision for digital health a reality. The obvious privacy concerns behind this remained largely unaddressed during the session.
Rometty also identified three factors which she is watching very closely because of the enormity of their impact on the future of digital health:
- Internet of Things (IoT)
- Artificial Intelligence (presumably like IBM’s Watson, which is actually a suite of 30 or more technologies)
Rometty said that blockchain is particularly promising because it will make transfers of information and resources much more secure, across networks but also in the supply chain. She expects rapid adoption of this technology.
In addition to working toward the future described above, the companies also identified compliance, clinical trial matching, and robotic surgery as near-horizon targets.
Finally, from a Cambia Grove perspective, it was interesting to hear Gorsky say that “Fifty percent of innovation is done internally.” If you are reading this, you probably know us as a space that has worked from the beginning to make it easier for startups and entrepreneurs to inject innovation into the system through partnership with large enterprises. It was great to get confirmation that opportunities in that space are in fact abundant, even with large players like J&J.
Sunday, March 12 – Personalized Medicine: Trends, Challenges and Future
Careful consideration of the moral and ethical implications of the health care future we are building for ourselves was on full display at this Sunday afternoon session, which opened with a reminder of the moral obligations that accompany practice in any professional field.
Panelists included Julia Cheek (CEO and Co-founder of EverlyWell), whose company works to make existing health care tests more accessible, and Rachel Haurwitz, President and CEO of Caribou Biosciences, a company operating on the leading edge of CRISPR-Cas genome editing. Joining them on the dais, along with moderator Mary Ann Roser, was Mildred Cho, a bioethicist from Stanford University.
The moral and ethical implications of consumer access to personalized genome information was articulated by Cheek very early in the presentation: What if a test at birth revealed to you (or your parents) how you might die? The question reflected the uncertainty that surrounds our understanding of the interaction between genetic and behavioral determinants of our health. But it also sparked a conversation during the panel that many of us (including new parents) will be able to have in the future.
Cheek said her firm focuses on the principle of “Do no harm” testing. The conversation turned to what the relationship between patient and provider looks like when consumers have even broader access to data from DNA testing. What is the provider’s (or regulator’s) role when even current genetic testing can reveal life altering diagnoses in the home? She mentioned the ethical issues raised with genetic tests when the tests are actually mandated, as opposed to voluntarily taken, as well as the question of equity that emerges when we think about who has access to this type of testing.
Haurwitz seemed acutely aware of the unique power her company’s technology wields. She raised the question of whether or not gene editing should be used to stop or prevent genetic disease. She said some genetic disorders and cancers are currently being investigated as targets for gene editing “cures”, and that sickle cell disease has already been identified as an initial target for this clinical work.
Haurwitz’s comments made me recall a question posed at the beginning of the panel – What is the line between medicine and research? As the technology advances each year (or even month), that line moves, and the ethical implications move with it. The line for Haurwitz’s company is in editing out genes, but Cho shared that while widespread permanent change to the genome was once considered out of bounds for this research, now there is broader acceptance of gene editing as a way to address disease. The panel even got into a discussion of what is actually a disease: Is autism a disease? They cited examples where the science driving what is considered a disease has cultural and sociological roots. Adding to the tension there—the U.S. and China are currently involved in a type of genomic arms race, to see which country will be first to use the technology effectively as a way to treat disease.
These are just a few of the other questions raised by the panel that seemed worthy of deep consideration:
- Cheek said she was extremely concerned about mandatory reporting of test data, e.g. to an employer. She said most employers (or organizations gathering test data for that matter) can't promise that what happens with this data will remain secure, as most companies haven't gone far enough yet to guarantee privacy.
- Cho raised the issue of what to do when data (even the types available from current tests) is not actionable in some way, given the current science. She said that data is already being captured but not shared because it is not actionable, while Cheek noted that many companies in the genetic testing space feel consumers are well equipped to use data and they should be free to share it.
- What attention is being paid to incorporating a diverse group of people and values?
In general, the afternoon was encouraging, as much for the consideration given these ethical concerns as for the solutions offered. As Haurwitz said, researchers and clinicians, through precision medicine, are starting to tease out how people will respond to specific therapies, which will make much more (if not all) of the data we gather actionable. From this perspective, now it’s a question of making sure this happens compassionately, with consideration for privacy, access and equity.
Read Part 2 here!
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