Guest blog: Sticking to HIE principles set by California consumer and patient leaders 11 years ago

By Deven McGraw and Mark Savage

Almost exactly 11 years ago today, a wide range of consumer and patient organizations across California––including AARP, Health Access, the American Civil Liberties Union of Southern California, Center for Democracy and Technology (CDT), Consumers Union, Planned Parenthood Affiliates of California, California Pan-Ethnic Health Network, Asian & Pacific Islander American Health Forum, Latino Coalition for a Healthy California, and many others––endorsed important principles to serve as core expectations and minimum criteria that should govern the design and implementation of health information exchange and technology in California.

When we helped draft and secure agreements to these principles, while working at CDT and Consumers Union respectively, statewide policies to facilitate statewide health information exchange were under serious consideration. Those efforts were having trouble progressing because discussions got mired in the details before coming to agreement on some overarching core principles to guide these efforts. In addition, the leaders who endorsed these principles wanted to send a clear message that statewide electronic health information exchange was widely supported by consumers and patients in California.

As California endeavors to improve health data infrastructure for every public health department, provider, and patient across the state, these core principles serve as a valuable touchstone to guide decisions on how best to structure a statewide network for health information exchange (HIE). 

As the California Department of Health and Human Services (CalHHS) Data Exchange Framework Stakeholder Advisory Group is getting underway, we believe it is worth newly embracing the nine principles centered on the needs of the consumer and patient as stated below, including:

  1. HIE should support and benefit individual health
  2. HIE should support and benefit population health
  3. HIE must be inclusive and equitable, and serve all Californians 
  4. HIE design should be universal, accessible, and ease interoperability among systems
  5. HIE must promote trust, and protect the privacy and security, confidentiality, and integrity of health data
  6. HIE should protect against misuse of health data 
  7. HIE should connect patients, providers, public health officials, and others as partners in health care, including technology literacy and access in languages other than English 
  8. Entities engaged in HIE must be held accountable to realize the benefits for Californians and their communities
  9. The benefits and protections of HIE are public goods, and enforcement proceedings should be public and transparent. 

In addition to the nine core principles summarized above, the coalition of consumer and patient organizations agreed on a core set of privacy and security principles to govern electronic health information exchange.

California faces many of the same quandaries leaders faced in 2010 as they attempted to envision a future for HIE in our state: a large, diverse population; need for electronic access and use of digital health information; many disconnected regions currently operating without a community HIE; a need for rigorous privacy and security protections, and more. 

But we also face a public health crisis that highlights daily our clear need for improved health data access and use––making the work of CalHHS and the Stakeholder Advisory Group, along with the issue of HIE, more urgent than ever. 

With this urgency in mind, we urge CalHHS and the Advisory Group to use these already vetted, widely endorsed principles to guide their important policy work, to enable the rapid adoption of an electronic health information exchange technical and policy framework that will improve health and wellbeing of all Californians.

Deven McGraw is the Lead for Data Stewardship & Data Sharing,Ciitizen Platform at Invitae. Mark Savage is the Director of Digital Health Policy at Savage Consulting.