Interoperability, Data Accessibility, and Digital Innovation

State of Play:  The Office of the National Coordinator (ONC) for Health Information Technology and the Centers for Medicare and Medicaid Services (CMS) have released two long-awaited final rules on interoperability and information blocking.  Dr. Don Rucker, the National Coordinator for Health IT, said the rule gives patients control of their health information and will lead to growth in patient-facing applications.  Both rules call on the industry to adopt standardized application programming interfaces (APIs).  Health information technology (health IT) vendors and providers have two years to adopt new APIs but must comply with information-blocking provisions within six months.  ONC’s draft strategic plan released in January encourages investment in programs that encourage patients to get access to their own health data and send it to the third party applications they choose

HLC Position:  HLC believes better health outcomes for individuals and populations require an interoperable healthcare system where the patient is at the center of care and the right data are available to the right person at the right time.  HLC’s consensus principles emphasize the need for the private sector to develop technologies and applications that enable bidirectional and instant exchange of meaningful health data.  HLC believes that greater accessibility and quality of health data can accelerate progress in medicines, improve the quality of care delivery, empower consumers, reduce costs, and lead to other benefits not yet imagined.  Broader data access and interoperability can also help disseminate best practices and essential improvements in health equity by having the tools to eliminate disparities in care.  HLC also believes that federal organizations such as CMS, Veterans Affairs (VA), and the Food and Drug Administration (FDA), among others, have an obligation to share federally held health information, with appropriate privacy and security protections, so that maximum public benefit can be gained from their collected data.

HLC Recent Activity:

  • On April 16, HLC’s Confidentiality Coalition sent a letter to HHS Secretary Alex Azar, CMS Administrator Seema Verma and the U.S. National Coordinator for Health Information Technology, Dr. Don Rucker, requesting an extension of the time period for implementation of the CMS Interoperability and Patient Access Final Rule and the ONC Cures Act “Information Blocking” Final Rule. The rationale for the request was based on members’ inability to implement these rules due to their singular focus on COVID-19 emergency activities.
  • On March 17, HLC commented on ONC’s Draft 2020-2025 Federal Health IT Strategic Plan. HLC supported efforts to use health IT as a catalyst to empower patients, lower costs, deliver high-quality care, and improve health for individuals, families, and communities.
  • An HLC workgroup continues to implement recommendations contained in the HLC-BPC Advancing Interoperability report, including draft contract language with baseline expectations of and requirements for interoperability, and development of a national interoperability measurement framework.
  • HLC secured provisions in the ONC and CMS final rules on interoperability that align with recommendations in the HLC-BPC report, including the rapid adoption of open- source standards to improve data access and interoperability.
  • On February 12, HLC testified before the House Committee on Veterans’ Affairs Subcommittee on Technology and Modernization about data privacy and portability at the VA. HLC voiced strong support for increasing interoperability to facilitate the appropriate sharing of health data among healthcare organizations, as well as access and availability of electronic health records to consumers.  HLC also recognized the importance of privacy protections for veterans’ health data when uploaded to third party applications not covered by the Health Insurance Portability and Accountability Act (HIPAA).
  • HLC cochaired the Friends of HL7 effort to advance FHIR-based standards for data exchange.
  • On January 14, HLC commented on CMS’s proposed rule on transparency and coverage. HLC supported meaningful healthcare price transparency proposals that tie pricing information to information on quality.
  • On December 16, HLC responded to a request for information (RFI) from Representative Diana DeGette (D/CO) and Representative Fred Upton (R/MI) on “21st Century Cures 2.0.”  HLC offered proposals to improve access and coverage for digital health services and innovative therapies.
  • HLC continues to work toward implementing recommendations in the HLC-BPC Advancing Interoperability, Information Sharing, and Data Access report.
    • On December 17, HLC met with staff from ONC to
    • In September, HLC, through the Interoperability Workgroup, developed draft model contract language that contains baseline expectations of and requirements for interoperability.
  • On December 9, HLC signed a group letter encouraging the administration to share its views with Congress on the impact of lifting the Patient ID ban.
  • In October, HLC formed a Transparency Workgroup consisting of HLC members and consumer groups to explore proposals offering meaningful price transparency to consumers and patients.
  • On July 19, HLC hosted a Capitol Hill briefing on the path to data interoperability. HLC members Ascension, Cerner, and Surescripts were featured at the briefing.
  • On July 17, HLC attended a listening session on interoperability of medical devices, data, and platforms to enhance patient care, hosted by the FDA and the Networking and Information Technology Research and Development (NITRD) National Coordination Office (NCO), National Science Foundation.
  • On July 16, the Interoperability Workgroup met to discuss partnership with the American Health Lawyers Association and the Johns Hopkins University’s Applied Physics Lab to develop model contract language that contains baseline expectations of and requirements for interoperability.
  • On June 21, HLC presented the findings of the HLC-Bipartisan Policy Center Advancing Interoperability, Information Sharing, and Data Access report at the Cambia Interoperability Summit.
  • On June 17, the Confidentiality Coalition responded to a request for comment on draft 2 of Office of the National Coordinator for Health Information Technology’s (ONC) Trusted Exchange Framework and Common Agreement (TEFCA 2.0). The coalition recommended that TEFCA policies and procedures relating to privacy and security align with the Health Insurance Portability and Accountability Act (HIPAA).
  • On June 12, HLC wrote ONC supporting the Sequoia Project’s application for the Recognized Coordinating Entity for TEFCA.
  • On June 11, HLC signed a multistakeholder letter supporting an amendment to the fiscal year 2020 Labor, Health and Human Services Appropriations bill striking the prohibition of HHS from spending any federal dollars to promulgate or adopt a national patient identifier.
  • On June 5, HLC commented on Senator Lamar Alexander’s (R/TN) and Senator Patty Murray’s (D/WA) draft “Lower Health Care Costs Act.” The letter supported advancing interoperability to allow for the seamless transfer of patient healthcare information.
  • On June 3, HLC commented on ONC’s proposed information blocking and interoperability rule. HLC supported the efforts to eliminate information blocking to ensure that patients have easy access to information about their healthcare, but also cautioned against overly prescriptive policies that could threaten innovation in the technology industry.
  • On June 3, HLC commented on CMS’s proposed rule on interoperability and patient access. HLC supported private sector collaboration with technical assistance from HHS on the identification and collection of a common set of data elements using federally adopted standards to improve patient matching.
  • On May 3, HLC responded to CMS’s proposed rule to advance interoperability and improve patient access to health data. HLC supported an industry-backed vetting process for third-parties whose applications access electronic health information via application programming interfaces (APIs).
  • On April 4, HLC CEOs met with key members of Congress and administration officials to discuss the private sector action items in the HLC-Bipartisan Policy Center Advancing Interoperability, Information Sharing, and Data Access report.
  • On April 2, HLC’s Interoperability Workgroup held its first meeting to begin implementing recommendations contained in the HLC-BPC Advancing Interoperability, Information Sharing, and Data Access report. The workgroup focused on developing model contracting language that contains baseline expectations of and requirements for interoperability.
  • On March 27, HLC held a panel discussion at the 10th annual Health Datapalooza, highlighting the findings in the HLC-BPC Advancing Interoperability, Information Sharing, and Data Access report. Panelists represented HLC, the Bipartisan Policy Center, and the University of California, San Francisco.
  • On March 26, HLC President Mary R. Grealy testified before the Senate Committee on Health, Education, Labor and Pensions (HELP) about “Implementing the 21st Century Cures Act: Making Electronic Health Information Available to Patients and Providers.”
  • On March 1, HLC responded to Senator Lamar Alexander (R-TN) regarding solutions to address America’s rising healthcare costs. The letter supported advancing interoperability to allow for the seamless transfer of patient healthcare information.
  • On February 14, in partnership with the Bipartisan Policy Center, HLC released a joint report, “Advancing Interoperability, Information Sharing, and Data Access: Improving Health and Healthcare for Americans,” at the HIMSS 19 conference.
  • On January 28, HLC responded to a request for comment on ONC’s draft Strategy on Reducing Regulatory and Administrative Burden Relating to the Use of Health IT and EHRs.