Data Accessibility and Interoperability

State of Play:  According to an October blogpost by Don Rucker, M.D., the national coordinator for health information technology at the Department of Health and Human Services (HHS) Office of the National Coordinator (ONC), more than 90 percent of non-federal acute care hospitals are using 2015 edition certified electronic health record technology (CEHRT) or soon will be.  The ONC’s 2015 edition health IT certification criteria called for significantly more advanced technical functionalities.  In addition, hospitals are electronically sharing more patient data than ever before; most hospitals not only now routinely share patient summary-of-care records electronically, but are also more able to easily find and integrate those records into their own clinical workflows.  Dr. Rucker notes, however, that “more can be done to address interoperability barriers and inject market competition back into healthcare.”  As an example, ONC continues to work on implementing Title IV of the 21st Century Cures Act, including promulgating rules related to information blocking that await Office of Management and Budget (OMB) review.  As part of the Centers for Medicare and Medicaid Services’ (CMS) broader efforts to advance consumers access to their e-health data, CMS finalized a rule to empower patients and advance the administration’s MyHealthEData initiative to improve patients’ access to their health information.

HLC Position:  HLC advocates for expanded access to federal health data, widespread adoption of health information technology (HIT), and the use of interoperable electronic health information systems driven by private-sector innovation. Recognizing the importance of interoperable infrastructure for information exchange, 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.  HLC also believes that federal organizations such as CMS, the Veterans Administration (VA), and the Food and Drug Administration (FDA), among others, have an obligation to share federally held health information, with appropriate privacy protections, so that maximum public benefit can be gained from collected data. 

Recent HLC Activity:

  • On December 13, HLC met with CMS to discuss progress of the HLC-Bipartisan Policy Center (BPC) Project on Advancing Interoperability and Data Access and to gain CMS’s insights on areas of emerging agreement in the report.
  • On December 4, HLC participated in an invitation-only White House Executive Forum on Healthcare Data Interoperability.
  • In collaboration with the Bipartisan Policy Center (BPC), HLC is engaged in a comprehensive project on measuring private-sector progress on nationwide HIT interoperability. The HLC-BPC Project on Advancing Interoperability and Data Access includes original research based on landscape analysis and expert interviews within and outside of HLC and BPC member organizations. Results of the research will be shared with federal officials as they put forward policies to advance nationwide interoperability.
  • On October 29, HLC met with the National Coordinator for HIT, Don Rucker, M.D., to update him on progress of the HLC-BPC Project on Advancing Interoperability and Data Access and to gain ONC insights on areas of emerging agreement in the report.
  • On October 19, HLC and BPC hosted a national roundtable meeting to discuss elements of the HLC-BPC interoperability project, including private sector action; policy recommendation; and measures of interoperability progress that emerged from interviews with stakeholders and experts.
  • On September 18, HLC cosigned a letter from the Partnership to Amend 42 CFR Part 2 urging Senate and House leaders to include provisions that would align 42 CFR Part 2 with existing HIPAA laws governing patient privacy and access to medical information in the final opioid legislative package.
  • On July 31, HLC wrote the Senate Health, Education, Labor, and Pensions (HELP) Committee regarding its hearing on “Reducing Healthcare Costs: Decreasing Administrative Spending.” The letter supported modernizing substance abuse confidentiality regulations to increase data flow and access to necessary medical information.
  • On July 19, the HLC Confidentiality Coalition hosted consultants from Leavitt Partners, who discussed their work with the CARIN Alliance to advance consumer access to digital health information.
  • On July 17, HLC wrote the House Energy and Commerce Committee in support of its examination of efforts to improve cost transparency for consumers. The letter supported increasing data access to improve availability of healthcare cost information.
  • On July 6, HLC responded to HHS regarding its initiative to develop a workgroup to increase innovation and investment in the healthcare industry. The letter discussed National Dialogue for Healthcare Innovation initiatives, including the HLC-BPC Interoperability Project.
  • Over the summer, HLC’s policy committee updated HLC’s “Data Policy Principles” to outline a vision for public and private sector healthcare organizations to share accessible and useable information with stakeholders. The updated principles have been shared with relevant staff from Capitol Hill and the administration.
  • On June 13, HLC cosigned a letter from the Partnership to Amend 42 CFR Part 2 in support of H.R. 6082, the “Overdose Prevention and Patient Safety Act (OPPS),” in advance of the Energy and Commerce full committee markup.
  • On June 6, HLC cosigned a letter from the Partnership to Amend 42 CFR Part 2 to Representatives Markwayne Mullin (R-OK) and Earl Blumenauer (D-OR) thanking them for their support for H.R. 5795, the OPPS Act, before the subcommittee vote.