It’s on us – The Consumer-Directed Path to Interoperability

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Blog post by Aneesh Chopra

This week marks yet another important, bipartisan milestone to improve our healthcare delivery system – not just for its substance, but how the 21st Century Cures bill moved to the President’s desk. Congressional leaders worked tirelessly on the various provisions, negotiated funding compromises, and declared this to be a top priority before the end of the year. President Obama weighed in by dedicating his weekly video address to its passage. And in perhaps one of the most emotional acts during his tenure as Vice President, Senate Majority Leader Mitch McConnell surprised Joe Biden by dedicating the cancer provisions in honor of his fallen son, Beau.

This is the Washington I know.

And once again, it has spoken, perhaps for the umpteenth time, that it wishes for our healthcare delivery system to operate more akin to the internet, where patient health data is accessible to inform care decisions in a manner that respects privacy and security. Our struggle since President Bush declared in 2004 that every American shall have their health records in digital form within the decade has been to achieve business, policy, and technical consensus on the method of achieving it.

We’ve come a long way, digitizing the manila folder; agreeing upon a “common language” minimum summary file that can be assembled and shared regardless of which EHR is used to document care; implementing secure email to push that information around (via Direct); and reaching public/private consensus on at least one (digital) path to enable applications to access health information when needed (via consumer API access).

Now before we break out the champagne, we know there is more work to be done and that it is on us to finish what we started. Here’s some context:

During my tenure as Virginia’s Secretary of Technology (2006-2009), we had the honor of hosting two of the nation’s ONC-funded Health Information Exchanges, and alongside a modest $1m in additional state funds, we invested in seven regional experiments to understand how best to fetch health records when needed and put them to use in improving care. They demonstrated better outcomes when care teams incorporated external data, but surfaced the need for more options to achieve interoperability that can better balance privacy, security and data liquidity.

blue-button-logoAs I joined President Obama to serve as his Chief Technology Officer (2009-2012), I came to appreciate a more direct approach – encouraging every data holder to provide patients with (machine-readable) access to their information, and over time, simplify its transmission to the places they trust. We started with the “Blue Button” initiative that began as a “noun” (push a blue-colored button on your patient portal and download a machine-readable copy) and evolved to a “verb” (a national campaign to encourage more data holders to offer machine-readable downloads). We experimented in automating “Blue Button” services by adding a patient Direct address option but that ran up against a botched industry rollout that hasn’t seen many patient Direct addresses integrated with certified EHRs.

We are approach the third iteration which will enable the same functionality we’ve come to expect in our digital lives – the ability for a consumer to authorize applications to share data as we do when we allow our weight tracking apps to access our fitness tracker steps data. The consumer-facing API requirements that originally surfaced in meaningful use stage 3/CEHRT regulations in 2015, further validated in MACRA regulations, and now even in the 21st Century Cures bill, provides us a legal and regulatory foundation for consumer-directed exchange.

aneesh-2As my fellow travelers on this journey and I have written before, the best (regulated) path to interoperability is an app in the patient’s hands.

On the technical front, a remarkable collaboration that includes support from Epic, Cerner and other leading EHR vendors, worked to hammer out a 1st generation, openly available implementation guide to achieve the “application access” certification requirements via a set of FHIR resources that constitute the patient summary file available to any consumer-designated application – without the need for time-consuming business associate agreements, or other obstacles that might otherwise be deemed “information blocking” (we can review which vendors will incorporate this open standard into their 2015 edition certified products when they publish details of their API as part of certification).

On the regulatory front, HHS has clarified that HIPAA does, indeed, offer patients the right to access their health data in an electronic format, and to share it with an application or address of their choice. However, HHS also enforces the HIPAA “Security Rule” which leaves to provider discretion how best to mitigate security risks in an API program, whether burdening the patient in the request process, limiting functionality on frequency of data sharing, requiring additional identity assurance, or even vetting apps for endorsement.

On the business model, HHS requires the API be open to any patient-designated app, but allows discretion on the EHR vendor to establish the terms and conditions associated with developer use. HIPAA limits what providers can charge patients to provide access to their data, but it is less clear what fee structures will apply for developers. The Argonaut Project implementation guide incorporates the method by which a patient can authorize an app to remain actively connected to their data without additional burden, but it is up for negotiation between providers and EHR vendors as to the ability to manage those API features.

So we have work to do if we wish for the vision that President Bush outlined and President Obama accelerated come to fruition in the coming months and years. Please join the movement – if you are a developer, please participate in the Argonaut Project to help improve and expand the number of available FHIR resources; if you wish to design a consumer-focused trust framework, join the CARIN Alliance, and if you are a disruptor, engage in the Commonwealth Fund’s work to shape a ‘digital health advisor’.

Of course, if you are an adventurous soul, join my team at NavHealth, a startup focused on bringing open data to life for patients in accountable care!

Join the #hcldr community of professionals, patients, clinicians, administrators, lurkers, counselors, social workers, designers, and advocates! Please join us on Tuesday, Dec 13th, 2016 at 8:30pm Eastern (for your local time click here) as we discuss the following topics:

  • T1 How easy (or difficult) is it for patients to access and use their health data? share any stories?
  • T2 Do you “prescribe” or use any health apps today? experience with “linking” with EHR data?
  • T3 Are you participating in any FHIR API “pilot” activities? share early insights w/ sync for science, ONC medications list?
  • T4 In preparation for MACRA, are you planning on using FHIR APIs to earn “end-to-end” quality reporting bonuses?
  • T5 Do you see a future when the entire patient health record will be accessible to patients in a machine-readable format? Care to join in a collaborative effort to make it happen?

About Aneesh Chopra

Aneesh Chopra is the former (and first) U.S. Chief Technology Officer. As an Assistant to the President, he designed the National Wireless Initiative, helped launch Startup America, and executed an “open innovation” strategy focused on better public/private collaboration as described in his 2014 book, “Innovative State: How New Technologies can Transform Government.”

Chopra is the co-founder and EVP of Hunch Analytics, a “hatchery” incubating ideas that improve the productivity of health and education markets, including NavHealth, an open data intelligence service. He serves as a Member of the Council on Virginia’s Future and in 2015, served as the inaugural Walter Shorenstein Media and Democracy Fellow at Harvard’s Kennedy School of Government. In 2011, Chopra was named to Modern Healthcare’s list of the 100 Most Influential People in Healthcare and in 2008, to Government Technology magazine’s Top 25 in their Doers, Dreamers, and Drivers issue.

Upon his departure as US CTO, President Obama noted, “As the federal government’s first Chief Technology Officer, Aneesh Chopra did groundbreaking work to bring our government into the 21st century. Aneesh found countless ways to engage the American people using technology, from electronic health records for veterans, to expanding access to broadband for rural communities, to modernizing government records. His legacy of leadership and innovation will benefit Americans for years to come, and I thank him for his outstanding service.”

Chopra earned his master’s degree in public policy from Harvard University in 1997 and his bachelor’s degree from The Johns Hopkins University in 1994.

Note: This bio was copied from the NavHealth website

References

“Weekly Address: Pass the 21st Century Cures Act”, Melanie Garunay, Whitehouse Blog, 3 December 2016, https://www.whitehouse.gov/blog/2016/12/03/weekly-address-pass-21st-century-cures-act, accessed 8 December 2016

“Senate Tribute to Beau Biden”, C-SPAN, 5 December 2016, https://www.c-span.org/video/?419543-2/senate-tribute-beau-biden, accessed 8 December 2016

“Sending Health Data Safely and Securely Over the Internet”, Aneesh Chopra and Dr David Blumenthal, Whitehouse Blog, 3 February 2011, https://www.whitehouse.gov/blog/2011/02/03/sending-health-data-safely-and-securely-over-internet, accessed 8 December 2016

“Application Programming Interface (API) Task Force Recommendations”, 12 May 2016, https://www.healthit.gov/facas/sites/faca/files/HITJC_APITF_Recommendations.pdf, accessed 8 December 2016

“Blue Button Provides Access to Downloadable Personal Health Data”, Aneesh Chopra, Whitehouse Blog, 7 October 2010, https://www.whitehouse.gov/blog/2010/10/07/blue-button-provides-access-downloadable-personal-health-data, accessed 8 December 2016

“About Blue Button”, HealthIT.gov, https://www.healthit.gov/patients-families/blue-button/about-blue-button, accessed 8 December 2016

“Getting Started with Blue Button+”, BlueButtonPlus.org, http://bluebuttonplus.org/, accessed 8 December 2016

“The Best Way to Share Health Records? An App in the Patient’s Hands”, Eric Schneider MD, Aneesh Chopra and David Blumenthal MD, The CommonWealth Fund, 23 February 2016, http://www.commonwealthfund.org/publications/blog/2016/feb/the-best-way-to-share-health-records, accessed 8 December 2016

“Argonaut Implementation Guide”, HL7 International, http://argonautwiki.hl7.org/index.php?title=Implementation_Guide, accessed 8 December 2016

“New HIPAA guidance reiterates patients’ right to access health information and clarifies appropriate fees for copies”, Jocelyn Samuels, US Department of Health & Human Services, 25 February 2016, http://www.hhs.gov/blog/2016/02/25/new-hipaa-guidance-accessing-health-information-fees-copies.html, accessed 8 December 2016

“Guidance on Risk Analysis”, HHS.gov, http://www.hhs.gov/hipaa/for-professionals/security/guidance/guidance-risk-analysis/index.html, accessed 8 December 2016

“Welcome to the Argonaut Project”, HL7 International, http://argonautwiki.hl7.org/index.php?title=Main_Page, accessed 8 December 2016

“How a Digital Health Advisor Could Help High-Need, High-Cost Patients and Their Caregivers”, Arnav Shah, Lovisa Gustafsson, Onil Bhattacharyya MD and Eric Schneider MD, CommonWealth Fund, 1 December 2016, http://www.commonwealthfund.org/publications/blog/2016/dec/digital-health-advisor, accessed 8 December 2016

Image Credit

LRT Construction – Khairil Yusof https://flic.kr/p/phMRUK

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2 comments

  1. Aneesh – thanks for outlining the challenges that we need to overcome to achieve consumer directed healthcare interoperability. We have come a long way, thanks to the efforts of many. As you know, ONC is, or has conducted a few challenges – ‘Move Health Data Forward Challenge’, ‘Use of Blockchain in Healthcare Challenge’ and ‘Consumer Health Data Aggregator Challenge’ – these challenges strive to make further progress for achieving consumer directed healthcare interoperability. As a startup and a participant in these challenges we have come to appreciate the complexities and the opportunities in front of us. MU3 certainly provides an excellent foundation for consumer-directed health data exchange, and combining MU3 with FHIR APIs certainly shines that proverbial light at the end of the tunnel for health data interoperability. Accessing medial records via a blockchain will help with privacy and security issues as well. However, we believe that ultimately the consumers will have to take charge of their healthcare records. They will have to become aware that they own their data and have the right to share their data with whom they choose in a manner under their direction. Regulatory and standards framework will facilitate and accelerate this, and as innovators we see ourselves providing the tools and technology to empower the individual.

  2. Very nice. Lots of good prospects for the digitizing of health care. I like the article on Digital Health Adviser as it address practical health tools and integration into patient care. I see the biggest challenge with in usability and having seniors and others properly use these patients tools and portals. Arguably usability is also the biggest challenge in Internet & tech today, with designers normally having grown up with tech, they do not understand the perspective of those who did not. I am an mhealth designer and neurosciences consultant, as well as a professional patient, having undergone 12 shunt surgeries for hydrocephalus since 1992, and the gamit of associated complications. It changed my life and work in nuclear medicine to patient advocate, mHealth inventor, music therapist, and neurosciences consultant. I remain many years ahead of the field.

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