HIT and HIE for America’s Most Vulnerable Patients

Today I will testify before the U.S. Congress, House of Representatives, Committee on Oversight and Government Reform, Subcommittee on Government Management, Organization and Procurement. The hearing, entitled “Too Many Cooks? Coordinating Federal and State Health IT” could go on for weeks if the issue were to be thoroughly explored. I was asked by the Subcommittee Chair, Edolphus Towns to present our experience with health information technology in community health centers and make some recommendations.

The rollout of HIT/HIE must include special considerations for vulnerable, diverse populations or run the risk that it will increase disparities in health services delivery and health outcomes. I will make the following recommendations at the hearing.

Insure that all legislation that supports the implementation of electronic health records targets those patients at highest risk on our society. This requires that all developments have organized ways for community participation in their planning and execution and that providers in the health care safety net – community health centers and public hospitals – are included as primary targets for funding implementation of health information technology

Insure that all legislation that supports health information exchange (HIE) includes provisions that safety-net providers – specifically community health centers and public hospitals – must be included in HIE networks. This requires that they first be given the resources to implement electronic health records (because you need an electronic health record in order to participate in a health information exchange). This also requires specific funding for implementation and maintenance of connectivity to HIE networks for safety net providers who may otherwise be unable to pay for the needed interfaces of their systems with these networks

Fund the integration of all EHRs, but specifically those in safety net facilities, into local, regional and state health department systems that monitor the disease burden in the community and help people optimize their preventive health care measures. Medically vulnerable populations are often the first victims of infectious diseases as they also suffer from inadequate nutrition, housing, clothing, health education and access to medical care.

Mandate that all EHR systems capture data on race, ethnicity, gender and primary language so that providers can examine disparities that exist in treatment and in outcomes within their health care delivery systems and work to correct them through targeted efforts aimed at the highest risk populations

Encourage EHR vendors to provide a mechanism for alerting providers to clinical trials which may be relevant to their patients. People of color are underrepresented in many clinical trials in this country and EHRs provide an easy way to identify patients who meet clinical trial criteria so that they may be offered the opportunity to participate. This improves the relevance of clinical findings of these studies to ethnically diverse populations.

Create criteria for EHR certification that require that information produced for patient consumption such as health education materials, visit summaries, portals that allow patients internet access to their own health information – all be made available in multiple languages and at a 4^th grade literacy level when needed.

Insure that rural areas are funded to deploy broadband technology and that broadband access is provided in all public housing being built. A timetable should be set to retrofit all existing public housing facilities with broadband capability.

Require the input of communities of color in planning the privacy and security requirements for health information exchange and in developing consent procedures for participation in health information exchange. There are well documented, legitimate reasons that issues of privacy, security and consent procedures will play out differently in communities of color. Among other issues, it must be made clear that information provided by patients and entered in their electronic health records as well as information shared in health information exchange networks is not subject to government use for purposes of identifying undocumented immigrants.

Provide resources for health information technology adoption in prisons, in the foster care system, for homeless health care providers, for migrant health care providers and for other providers serving vulnerable populations so that these mobile and transient patients can have records that are available wherever they may go.

Create a national system for specifically monitoring the impact of health information technology and health information exchange efforts on vulnerable populations and tying future funding to successes in eliminating disparities in treatment by the participating health care providers and disparities in the outcomes of their patients.

Insure that any pay-for-performance systems include mechanisms for risk adjustment for outcome evaluations – not to reduce the goals that we must reach but to recognize the added difficulty that traditionally medically underserved people may have in achieving these goals.

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I look forward to suggestions and enhancements to the items cited above.