In 2018, the Center for Medicare and Medicaid Services (CMS) made several high-profile announcements and policy changes to give patients more control over their health information. Beginning with the 2018 HIMSS Conference announcement of the MyHealthEData initiative, CMS Administrator Seema Verma and other CMS and HHS officials used both the public speaking circuit and existing regulatory and policy authorities to push the industry to improve a patient’s ability to more fully access and use their health data. Ultimately, the push was to get industry to voluntarily make changes to promote open APIs and Blue Button 2.0 and support the efforts of third-party developers.
The challenge for CMS is to determine what to do with MyHealthEData in 2019, especially in an Administration now entering its third year. How can CMS make progress with a new Congress and an election year looming? The industry is still waiting for the CMS Interoperability and Patient Access proposed rule. I’m sure that 2019 will have more CMS announcements touting improvements to patient data access, but the CMS focus needs to shift to operationally-oriented actions that will make the MyHealthEData initiative something more tangible and lasting.
Let me be clear: I fully support what CMS–as well as ONC–has done over the past year to raise awareness and promote policies to increase patient data access and drive industry support for building the necessary infrastructure. These first steps have energized the developer community. However, I would like to see CMS do three things in 2019:
- Begin a national beneficiary campaign to promote educating Medicare beneficiaries and their care providers on how to understand their claims/clinical data and use that data with third party tools to support their overall health needs and medical expense planning. That campaign will need to focus on multiple personas because beneficiaries have widely varying health and financial conditions and technical literacy. As I mentioned in an earlier blog, a lot of work needs to be done getting all patients more proactively accessing and using their data—especially the Medicare population.
- Expand strategic partnering that includes deadlines with defined criteria for health insurance plans and providers to provide patients access and use of their health data. While multiple voluntary coalitions have been formed publicly expressing support and providing paths to patient data access, much more needs to be done to create change in the industry. CMS has supported the work of the DaVinci Project wand the Carin Alliance for example, but many of CMS’ efforts have been too narrowly focused.
- Provide funding for pilots that will demonstrate the value of the third-party applications for the beneficiaries. While many will disagree with a more active government fiscal intervention, especially after the “meaningful use” effort, this effort needs more than words and cajoling to really take off. This is not about the government picking winners and losers, the tech community requires real support to create lasting change.
I wish CMS well in 2019. The CMS staff are the quiet heroes who help drive and oversee our sprawling and increasingly dysfunctional US healthcare system. While the HealthEData initiative is a very small piece of the tremendous work CMS does, HealthEData or something like it must be the lever for real change supporting the beneficiary’s and patient’s central role in the healthcare system. Nothing less than the future of US Healthcare depends on it.