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HIV Health Information Exchange (HIE)

Health Information Exchange (HIE)

HIV/AIDS Surveillance has acquired funding to create a bi-directional connectivity between healthcare providers and the Georgia Health Department to improve the Care Continuum (Cascade) of HIV patients. HIE proposes to develop and implement a system to alert healthcare providers of a patient's "out-of-care" care status so that they can re-engage them in HIV care.  By improving likage to and retention in care, and encouraging adherence to antiretroviral therapies, HIE will support clinical efforts to reduce viral loads and achieve an "undetectable viral load"  or viral suppression.

For more information on similar systems, please click this link for articles by the New England Journal of Medicine and the Journal of the American Medical Informatics Association on the Louisiana Public Health Information Exchange (LAPHIE).

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HIE Frequently Asked Questions

What is a Health Information Exchange (HIE)?

Health information exchange involves moving electronic health-related records between organizations (“What is health information exchange?,” n.d.). The goals of HIE include making clinical information easier to access, improving patient safety, enhancing clinical effectiveness, and making health care safer, more equitable and patient-centered.

How does ongoing treatment of HIV-positive persons help prevent the spread of the disease?

Linking HIV-positive individuals to care, and maintaining them in continuous treatment, is a key toward not only improving the health outcomes of HIV-positive persons, but also preventing the transmission of the virus to that person’s partners (Cohen et al., 2011). Regular and ongoing treatment with antiretroviral medications keeps the amount of virus in the patient’s body low, so that the risk of transmission is greatly reduced.

How can HIE help link HIV-positive persons to care, and maintain them in care?

In many states, including Georgia, public health departments already receive client-level case information, laboratory reports and other documents from multiple sources. A HIE that includes such public health data has the potential to play an important role in disease prevention for a variety of infectious diseases, including HIV, tuberculosis and syphilis (Sweeney et al., 2013). HIE can help identify HIV-positive persons living in Georgia who are “out of care” (for instance, who have not had routine HIV-related laboratory tests including CD4 or viral load tests done in more than a year), or who have not been “linked to care” by receiving treatment soon after diagnosis.

Has this HIE concept been tried elsewhere?

Yes. A similar HIE is already operating in Louisiana (Magnus et al., 2012). So far, of the 344 persons identified as out of care with at least 6 months follow-up, 85% have been re-engaged in care (i.e., they have had the routine laboratory tests).

Why is Georgia Department of Public Health (DPH) considering a proposal to change Georgia HIV/AIDS disclosure law (see proposed change below)?

The current law (O.C.G.A. 24-12-21) requires that health care providers disclose a patient’s HIV/AIDS information to the Department of Public Health, but does not allow the Department of Public Health to give that same information back to health care providers. Laws surrounding HIV/AIDS status confidentiality are important to the health and safety of those living with the virus. The proposed change to the law will keep this information confidential, but would allow the Department of Public Health to help identify patients not receiving care and allow opportunities to reengage them in treatment. By sharing HIV/AIDS information with a patient’s health care provider, the Department of Public Health will be able to identify those persons living with HIV/AIDS who are currently not receiving therapy and get them reengaged into appropriate care.

Wouldn’t the patient’s HIV care provider already know about his or her treatment status?

Many HIV-positive persons who are out of care may seek health care for other reasons from a variety of licensed health care providers. The HIE is designed to identify HIV-positive person who are currently out of care, and share this information with the person’s health care provider when the person seeks care for other reasons.

How would the proposed language affect the existing statutes that pertain to disclosure of HIV/AIDS information for minors?

The proposed language does not affect the portions of Georgia code that deal specifically with disclosure of HIV/AIDS information of minors. In addition, there are no plans to include HIV-positive persons who are minors in the HIE.

What ethical questions arise from the concept of using public health data for treatment and prevention goals?

A 2011 commentary in New England Journal of Medicine asks: “what is the greater mistake: opening up the [HIV public health] registries, potentially giving infected people and clinicians more choice, or leaving those walls intact, recognizing that the data are imperfect and that some people don't want their information shared even with their own health care providers?” (Fairchild & Bayer, 2011). The ethical questions surrounding HIV/AIDS disclosure laws are many-layered. See the bibliography below for a few references to consult for more information.

What are the consequences if the proposed language change does not go forward, or if the law does not change?

If the current law does not change, DPH will not be able to share an HIV-positive persons’ HIV/AIDS information regarding his or her medical care or treatment with that person’s health care provider without specific written consent from the patient to do so. This may present significant technical and operational challenges that could limit the scope and/or effectiveness of the HIE.

References

Cohen, M. S., Chen, Y. Q., McCauley, M., Gamble, T., Hosseinipour, M. C., Kumarasamy, N., … Fleming, T. R. (2011). Prevention of HIV-1 Infection with Early Antiretroviral Therapy. New England Journal of Medicine, 365(6), 493–505. doi:10.1056/NEJMoa1105243

Fairchild, A. L., & Bayer, R. (2011). HIV surveillance, public health, and clinical medicine--will the walls come tumbling down? The New England journal of medicine, 365(8), 685–687. doi:10.1056/NEJMp1107294

Magnus, M., Herwehe, J., Gruber, D., Wilbright, W., Shepard, E., Abrams, A., … Kaiser, M. (2012). Improved HIV-related outcomes associated with implementation of a novel public health information exchange. International journal of medical informatics, 81(10), e30–38. doi:10.1016/j.ijmedinf.2012.06.005

Sweeney, P., Gardner, L. I., Buchacz, K., Garland, P. M., Mugavero, M. J., Bosshart, J. T., … Bertolli, J. (2013). Shifting the Paradigm: Using HIV Surveillance Data as a Foundation for Improving HIV Care and Preventing HIV Infection. The Milbank quarterly, 91(3), 558–603. doi:10.1111/milq.12018

What is health information exchange? (n.d.). Retrieved September 23, 2013, from http://www.hrsa.gov/healthit/toolbox/RuralHealthITtoolbox/Collaboration/...

Selected Bibliography

Health Information Exchange

Project Inform Think Tank (2013). Using Surveillance and Other Data to Improve HIV Care Linkage and Retention. Retrieved September 24, 2013 from http://www.projectinform.org/pdf/surveillance_0313.pdf

Shapiro, J. S., Mostashari, F., Hripcsak, G., Soulakis, N., & Kuperman, G. (2011). Using Health Information Exchange to Improve Public Health. American Journal of Public Health, 101(4), 616–623. doi:10.2105/AJPH.2008.158980. Full Text: http://ajph.aphapublications.org/doi/pdf/10.2105/AJPH.2008.158980

Simon, S. R., Evans, J. S., Benjamin, A., Delano, D., & Bates, D. W. (2009). Patients’ Attitudes Toward Electronic Health Information Exchange: Qualitative Study. Journal of Medical Internet Research, 11(3). doi:10.2196/jmir.1164. Full Text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762851

Louisiana Public Health Information Exchange (LaPHIE)

Herwehe, J., Wilbright, W., Abrams, A., Bergson, S., Foxhood, J., Kaiser, M., … Magnus, M. (2012). Implementation of an innovative, integrated electronic medical record (EMR) and public health information exchange for HIV/AIDS. Journal of the American Medical Informatics Association, 19(3), 448–452. doi:10.1136/amiajnl-2011-000412. Full Text: http://jamia.bmj.com/content/19/3/448.full.pdf+html

Legal/Ethics/Civil Liberties

Goldstein, M. M. (2010). Health information technology and the idea of informed consent. The Journal of law, medicine & ethics: a journal of the American Society of Law, Medicine & Ethics, 38(1), 27–35. doi:10.1111/j.1748-720X.2010.00463.x.

Maiorana, A., Steward, W. T., Koester, K. A., Pearson, C., Shade, S. B., Chakravarty, D., & Myers, J. J. (2012). Trust, confidentiality, and the acceptability of sharing HIV-related patient data: lessons learned from a mixed methods study about Health Information Exchanges. Implementation science: IS, 7, 34. doi:10.1186/1748-5908-7-34. Full Text: http://www.biomedcentral.com/content/pdf/1748-5908-7-34.pdf

Sweeney, P., Gardner, L. I., Buchacz, K., Garland, P. M., Mugavero, M. J., Bosshart, J. T., … Bertolli, J. (2013). Shifting the Paradigm: Using HIV Surveillance Data as a Foundation for Improving HIV Care and Preventing HIV Infection. The Milbank quarterly, 91(3), 558–603. doi:10.1111/milq.12018. Full Text: http://onlinelibrary.wiley.com/doi/10.1111/milq.12018/pdf

 

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Georgia's Legal Ethical Workgroup Committee Members

Jeff Cheek        
Health Program Administrator
Fulton County Health and Wellness

Marisol Cruz, D.B.A., M.S.
Ryan White Part B Manager
Georgia Department of Public Health

Angelique Culver, Esq., LLM
Senior Associate General Counsel
Grady Health System

Luke Fiedorowicz, Ph.D.
Director of Science, Research and Academic Affairs
Georgia Department of Public Health

Jeff Graham
Executive Director
Georgia Equality

Kathy Kinlaw, M.Div.
Associate Director & Program Director for Health, Science, and Ethics
Center for Ethics
Director, Health Care Ethics Consortium of Georgia

Cathryn Marchman, LCSW, JD
Legal, Policy and Compliance Officer
St. Joseph's Mercy Care

J. Patrick O’Neal, MD
Director of Health Protection
Georgia Department of Public Health

A. Eugene Pennisi, MA, MPH
HIE Project Director
Georgia Department of Public Health

Ken Prince
Director of Program Operations and Grants
St. Joseph's Mercy Care

Cynthia Smith, J.D.
Member Emory University IRB

Cathalene Teahan
President
Georgia AIDS Coalition

John R. Warchol, J.D.
Atlanta Legal Aid Society
AIDS Legal Project

Melanie Thompson, MD
AIDS Research Consortium of Atlanta