Last week was an odd week when it came to consumer health data news. The chief executive officer (CEO) of Epic grabbed headlines with her request for hospital executives to oppose a proposed rule from the Centers for Medicare & Medicaid Services (CMS) to promote data sharing and prevent “data blocking.” The rule, which was released last year and could be finalized as early as next month, is intended to expand access to health information on application programming interfaces (think mobile devices, such as smartphones or wearables). It’s also intended to improve the exchange of health data (see The CMS Interoperability and Patient Access Proposed Rule) and prevent data blocking, an increasingly common charge. The proposed rule was designed to “improve access to, and the quality of, information that Americans need to make informed health care decisions, including data about health care prices and outcomes, while minimizing reporting burdens on affected plans, health care providers, or payers.” CMS has also said the rule makes good on promises made in the 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program.
I was surprised to see formal opposition to the rule from Judith Faulkner, CEO of Epic, who sent a letter (see Epic’s Judy Faulker: ONC’s Data Blocking Rule Undermines Privacy, Intellectual Property Protections and Epic CEO Sends Letter Urging Hospitals To Oppose HHS Data Sharing Rule) to hospital CEOs urging them to oppose the rule. The stated rationale is that while the rule would jeopardize consumer privacy, many of the benefits have already been realized. The letter states: “Patients would lose control over their health information…” and “Your patients have been able to download their data since 2010,” and could “Share their health information with anyone in the world that has internet since 2017.”
It was ironic that in the same week news of this letter writing campaign spearheaded by Epic came out, I read an announcement from Humana that it was facilitating connectivity to its Go365 workplace wellness program to literally hundreds of consumer health data gathering products (see the press release: Validic, Humana Collaboration Targets Growing Accessibility, Connectivity Of Health Incentive Programs). Go365 is described as a program that’s rooted in behavioral economics and actuarial science that’s geared to change lifestyle behaviors and lead to better health for each member. This partnership will allow more than five million members including Medicare and Medicaid health plan members to connect Go365 information—various activities that improve health and earn rewards—with hundreds of wearables, health apps, smartwatches, and in-home medical devices, such as glucose monitors. The reason? It will expand engagement. The company notes that 96% of the U.S. population has a smartphone and 35% of wearable owners use devices that aren’t manufactured by popular vendors, so this partnership ensures they’re able to share their data more easily regardless of the device they choose.
The contrast (and tension) between the Humana and Epic positions gave me whiplash. It reminded me of one of my “go-to” thought leaders, Stewart Brand (a man ahead of his time and founder of The Whole Earth Catalog, CoEvolution Quarterly, Global Business Network, The WELL, and The Hackers Conference). In 1984, he said:
On the one hand information wants to be expensive, because it’s so valuable. The right information in the right place just changes your life. On the other hand, information wants to be free, because the cost of getting it out is getting lower and lower all the time. So you have these two fighting against each other.
I have always leaned toward transparency. I think that in the aggregate and in the long run, we are better off (in all walks of life) when information is broadly available. And for health and human services, interoperability is a key issue. Integrated care, value-based reimbursement, consumer engagement, and success in addressing social determinants all assume a future with inexpensive and robust data sharing. The experience of our team is that, for specialty care provider organizations, interoperability is not working (see this summary of the town hall session at The 2019 OPEN MINDS Performance Management Institute, Health Information Exchange—Can Work, Isn’t Working). For executive teams of specialty provider organizations that want to remain independent of health plans and health systems, this is a big strategic issue – and one that should have their attention.
For more on the issues of privacy and data sharing, check out these OPEN MINDS resources:
- Express Scripts Announces Digital Formulary
- Amazon Launches New Alexa Feature Allowing Consumers To Manage Medications
- SAMHSA Proposes Changes To Addiction Treatment Privacy Rules
- Six Functions For Moving EHRs To The Next Level
- So, How Will Facebook Handle Medical Misinformation?
- Presidential Order Requires Price Transparency For Hospital Services & Out-Of-Pocket Costs
- 40% Of Health Care Organizations Were Attacked By WannaCry Ransomware In Six-Month Period
- CommonWell Health Alliance Awards Change Healthcare Six-Year Contract To Be The Provider Of Clinical Interoperability Services
- North Dakota To Allow In-Room Electronic Surveillance Equipment At Assisted Living Communities & Nursing Homes
- OnMed Launches Unstaffed Telemedicine Booth
And join us on June 2 at The 2020 OPEN MINDS Strategy & Innovation Institute for the keynote address, Innovation By Design: Capturing Value In Healthcare led by Carl Clark, M.D., president and chief executive officer, Mental Health Center of Denver.