A quiet revolution is underway in healthcare data. A decade after the HITECH Act spurred the rapid adoption of electronic medical records, we are seeing the resulting data being integrated with other sources such as insurance claims, clinical registries and social determinants of health to produce richer data sets for analysis and action.
As we’ve noted in our own consulting work, Datavant has emerged as a key player in connecting disparate data sources at the patient level while protecting privacy. The company’s methodology anonymizes patient identifiers with a unique patient key, matches records across data sets, and enables data exchange.
So I was excited to attend Datavant’s Future of Health Data Summit in Washington, DC earlier this month. As one would expect from a company that strives to organize and present data efficiently, accurately, and clearly, it was a quality event. The day featured 40-minute panels with strong moderators and 3-4 expert panelists along with keynotes from luminaries such as former FDA Commissioner Robert Califf, CDER Director Janet Woodcock, and former Senate Majority Leader Tom Daschle.
The closing panel, Healthcare Policy, Value-Based Care and Data Sharing was typical of the program. Moderator Neal Katyal (former Acting US Solicitor General) made the most of the expertise of panelists David Shulkin (Former VA Secretary), Mona Siddiqui (Chief Data Officer, HHS) and Andrew von Eschenbach (former FDA Commissioner).
They were all passionate about the ability to finally leverage healthcare data at scale. Shulkin talked about using data to prevent suicides of veterans. The highest incidence is in the first year after discharge, when they risk falling between the cracks as they transition from the DoD to VA system. Siddiqui bemoaned the difficulties of confronting the opioid crisis with 2-year old data, and von Eschenbach spoke of the potential to transform the whole healthcare system by improving care and reducing costs.
Shulkin seemed the most skeptical about where things are headed in the near term, predicting incremental change in the healthcare system as the most likely outcome of the fight between Medicare-for-All Democrats and Republicans who want to crush federal involvement. When Siddiqui gushed about the potential to use the planet’s largest healthcare data set (from CMS) in hackathons and challenges and system redesigns, Shulkin interjected that working with the government was, “not for the feint of heart,” and “,not a great strategy for a young company.”
There was an interesting back and forth about how to get the public comfortable with data sharing, how to overcome the decline of public trust in general, and how to address privacy from a policy and technological standpoint.
The panelists generally agreed that patients would be on board if they saw how use of data could help with their own care, and that even spectacular data breaches wouldn’t completely erode patients’ trust in the system. We have become accustomed to such breaches with our financial data, after all.
Shulkin thought people would get really upset if they learned that their data was for sale. I disagree -I think consumers are already coming to terms with their data being sold throughout the rest of the information economy; it’s by no means unique to healthcare.
In closing, von Eschenbach said he was “incredibly optimistic” due to the tremendous energy coming into the process right now. It’s a chaotic environment, he said, but we’ll look back in five years and be grateful for today’s chaos.
Shulkin pointed to the large number of healthcare data companies formed over the past three years, using that as an indicator of the level of optimism in the field. It wasn’t evident to me that he fully shares this optimism.
And Siddiqui presented herself as a realist but also a bit of a visionary and optimist, who is thinking about the healthcare system that we want to have. For her –and many of us– it’s one that’s more technology enabled, virtual care enabled, and homecare centric.
I’m heading to the HLTH conference in Las Vegas next week. I hope it’s as worthwhile as the Datavant event!