Earlier this month, Datavant held its 3rd annual Future of Health Data Summit, which brought together over 400 leaders, thinkers, researchers and policymakers from across the healthcare ecosystem. Guests engaged in thoughtful and candid conversation on present-day challenges and future aspirations for healthcare, with topics ranging from the vision for healthcare technology in 2050 to payer-provider data collaboration, from real-world evidence in clinical development to reimagining the nation’s health data infrastructure.
The motivation for everyone in attendance is a recognition that we can, and must do, better for patients. We need stakeholders across the policy, regulatory, commercial, scientific, and technology spheres to work together to move our system towards values-based care, as noted by Kyu Rhee, SVP and Aetna Chief Medical Officer at CVS Health. That is, all organizations in the healthcare industry ought to act in a manner that reflects the core values we as a society hold sacred.
Here are some of the key themes I took away from the day of energizing dialogue. I trust the leaders in attendance to carry forth the conversation into their respective organizations and catalyze the change we urgently need.
- Keeping up the momentum around health equity
Health equity was a top priority discussed in several panels by leaders from both the public and private sectors. Many cited the disparities witnessed during the pandemic as evidence that we need changes in policies and practice that aim for more equitable healthcare. “I worry that we get distracted by other things,” said Allison Oeishleager, Chief Data Officer and Director of the Office of Enterprise Data and Analytics at CMS. “We can’t lose the momentum that we have on health equity.”
Leaders recognized the need to be more inclusive of people in rural communities and with underprivileged backgrounds, in everything from the way we design tools and services to the manner in which we run clinical trials.
- When it comes to virtual care and digital tools, Robert Califf, FDA Commissioner, said, “You’re going to have to consciously make those products look different, and test them out with [all] kinds of people to make sure they can be used.”
- Alpa Patel, SVP of Population Science at the American Cancer Society, shared a story from her hometown of Atlanta about the impact of systemic inequities that impact care. “Access to equitable preventive services…is a major issue. If you live in southwest Atlanta, one of the poorer parts of the city, you have to take two buses and a train to get [to the closest cancer center], or you have to pay $25 a day to park there.”
- Najat Khan, Chief Data Science Officer and Global Head, Strategy and Operations at Janssen Research and Development, noted that “Only 10% of patients are actually sequenced in the real world and it is even lower for patients of color.” For patients who cannot access genomic testing, they may never become aware of treatments that could help them.
- Building trust across stakeholders
Trust was a constant theme throughout the day and panelists grappled with different ways of establishing trust in data sharing across the many stakeholders involved – life sciences, payers, providers, patients, government, and the research community.
FDA Commissioner Robert Califf described the current systemic problem as one of “sub-optimization” where each player is “highly incentivized to build a fortress” around proprietary data collection. As a result, “the whole is a lot less than the sum of the parts…because we’re all selling our own wares.”
According to many panelists, the solution is a combination of more alignment on semantic data standardization, policies to promote data interoperability, technologies to make data sharing easier and safer, and incentives to promote their adoption.
“Trust is so important,” said Kyu Rhee, SVP and Aetna Chief Medical Officer at CVS Health. “The inevitable transformation will be leveraging data and technology to facilitate quicker, simpler, more accessible care… We need to reflect on how we learn from other industries and facilitate that trust.”
- Involving patients in the research process
Many panelists called out the idea that in order to have a truly patient-centric healthcare system, we need to involve patients earlier in the research process and make it easy for them to participate.
Andrea Ramirez, Chief Data Officer at the NIH’s All of Us Research Program, said, “We need to make sure we’re not being paternalistic or erroneously assuming that people don’t want to share… What you hear from rare disease communities is, ‘Please stop holding my data back, give it to everyone. Why wouldn’t I want a drug company to have my data if they can create a new drug that might help?’”
In the “Future of Patient Centered Research” panel, speakers emphasized the need to involve patients and caregivers much earlier in the research process. Michelle Longmire, CEO and Co-Founder of Medable, advocated for engaging patients and caregivers as early as trial design to ensure more flexibility for patients in trial participation from their communities. She predicted that in five years, “patients would be at the epicenter of research, not clinical sites.”
All of this needs to be done with proper consent and transparency built in, according to Amy Abernathy, former Principal Deputy Commissioner at the FDA and current President of Clinical Research Platforms at Verily. “It’s about giving people the opportunity to put their hand up and say, ‘Yes, you can re-contact me in the future if you find something important for me to participate in.’ The infrastructure needs to solve for those things.” If we can build this kind of trust with patients, they become an active and ongoing part of longitudinal studies.
As Sarah London, CEO of Centene, stated, “The demands of patients to have agency in their journey is only increasing.”
- Unlocking data from legacy systems to foster interoperability
We need to look no further than the COVID-19 pandemic to understand the harm when health data is siloed in outdated systems that don’t communicate with each other.
U.S. Congressman Scott Peters of California’s 52nd District highlighted the importance of public-private partnerships and the role of legislation for improved health data interoperability. In February 2021, Congressman Peters introduced the bipartisan Health Statistics Act to rapidly assemble decentralized data systems to better inform real-time public health responses to outbreaks like COVID-19. “We have countless healthcare encounters every day, each generating unique data points. We need to ensure that researchers can access this aggregated, anonymized data,” Congressman Peters said. “Study of this information can provide us with important data gathered in the real world about the efficacy of potentially life saving cures and therapies.”
Private sector leaders point to challenges around both technology and incentives as a barrier to interoperability. Deepesh Chandra, Chief Analytics Officer at Bon Secours Mercy Health, explained the heavy operational and financial lift for providers to pull data from their systems and make it available for the rest of the ecosystem, at a time when margins are depleted and technology budgets are shrinking. “Thinking about how you’re constructing your business model to allow [providers] to invest in foundational technologies to pull the data out… is really critical,” Chandra said. “The government has a very important role in this… There needs to be a HITECH Act for opening data from the provider ecosystem.”
Ryan Smith, COO of Graphite Health, echoes this sentiment. “Having data locked up in silos is really a challenge… I believe it’s going to take [an] outside organization that has intimate connections with health systems as well as standards bodies and policy makers… to come up with a common data language. If we can get there, I am so excited about the future because we will unleash all kinds of digital innovation.”
- Leveraging genomics data in advancing precision medicine
Several panels touched upon the exciting discoveries unleashed by advancements in genomics testing and use of “omics” data especially in oncology care. Research initiatives like Count Me In are generating full exome sequencing along with patient-reported data from cancer patients. A growing field of “radiomics” is being used to determine the genomic status of tumors using radiographic features.
As Jeff Elton, CEO of ConcertAI, stated, “getting this information back to the clinician in real time so they can make the right diagnosis and get patients on the right treatment at the right time” is going to be how we get to precision medicine.
Lloyd Minor, Dean of the Stanford University School of Medicine, embraced the need to connect clinical data with genomic data to derive more meaningful insights – and cautioned that doing so while protecting privacy was of utmost importance. “Privacy is one of the real limitations to being able to move forward,” Minor said. Some panelists discussed advanced techniques such as synthetic data, privacy-preserving record linkage, and federated data networks as methods to protect privacy while preserving data utility.
Overall, panelists recognized that genomics data has transformed personalized cancer treatment and can do so for other disease states. Finding a way to safely utilize genomics data in combination with other data types is imperative for advancements in rare disease research and other areas. Jamie McDonald, CEO of Parexel, said, “Your data is not just your EMR record… it’s labs, it’s pharmacy, it’s data that needs to be combined to get a holistic longitudinal view… Ultimately, we’re trying to benefit patients and the healthcare system… we have to do better as an industry and as a country.”
Momentum is on our side
We want to thank all our guests for the insights and perspectives they shared at the Future of Health Data Summit. There is an immense amount of innovation happening every day in diverse corners of our industry. The dedication of these leaders to improving the healthcare system and the lives of patients around the world gives me immense hope for change.
At Datavant, our commitment to the industry is to foster continued dialogue on these important issues, and to rally all stakeholders towards a future where health data can be used ethically to create a more equitable, patient-centric, and data-informed society.
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