New York: A Look at One State’s Transformative Efforts to Combat the HIV/AIDS Epidemic while Leveraging Health Information Technology and Innovative Solutions

Sheetal Shah and Larry Jessup | June 27, 2013

To commemorate National HIV Testing Day on June 27th, we wanted to highlight the State of New York’s efforts to fight the HIV/AIDS epidemic when it first emerged, and to celebrate the new and innovative tools the state is exploring to prevent HIV and to test, diagnose, treat, and care for those living with the disease.

In 2010, under the National HIV/AIDS Strategy for the United States, the Obama Administration articulated a simple, yet bold vision: “The United States will become a place where new HIV infections are rare and when they do occur, every person regardless of age, gender, race/ethnicity, sexual orientation, gender identity, or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.”

Over the past thirty years there has been tremendous progress made in fighting the disease. Recent data show however:

For these reasons, public health officials have been looking for resources and opportunities to reach vulnerable, at-risk populations and individuals with a message to get tested for HIV so if they are negative, they can learn to stay negative, and if they are positive, they can get treated.

Innovative practices and resources using social media and Information Technology

Over the past three years, New York State has hosted innovative events to explore how health communications strategies and social mediaExternal Links Disclaimer could be used to expand the impact of HIV and STD prevention and treatment services.

New technology, such as wearable sensors and home monitoring tools which provide continuous health status feedback, allow patients to become more engaged in maintaining their health and allow clinicians to provide “just- in-time” interventions to better manage HIV and other infections and conditions.

Portable, low-cost, point of care devices can give patients and health care providers medical test results such as HIV status, CD4 count, and viral load within minutes. When devices like these have the ability to provide instant physiological data outside of medical offices, the roles of providers and patients will evolve, and data integration from multiple platforms will be key to coordinated care.

Moreover, with medical information doubling every five years, artificial intelligence will play an important role in the development of clinical decision support tools, helping physicians sift through and extract the most relevant information to make diagnostic and treatment decisions in partnership with patients.

According to Dan O’Connell, Acting Director of New York State’s AIDS Institute, “Because HIV/AIDS presents complex prevention and treatment issues related to demographics, sexuality, confidentiality, and multiple co-occurring conditions, technology will be extremely useful.”  New York hopes to be at the forefront in the evaluation and integration of many different tools that hold exciting potential.  Some may include:

  • Targeted texting
  • Health gamesExternal Links Disclaimer
  • Sensors for medication bottle capsExternal Links Disclaimer and blood drug levels
  • Mobile apps that learn and adapt to usersExternal Links Disclaimer
  • Social media patient support groupsExternal Links Disclaimer
  • Virtual caregiversExternal Links Disclaimer

Additionally, the New York eHealth Collaborative (NYeC) is building a patient portal, a new service which will give New Yorkers access to their health care records online.  All of these efforts continue to facilitate coordinated care and foster patient engagement.

These trends must intersect with the parallel universe of rapidly evolving health IT systems, which many believe is required to achieve better, more evidence-based care, improving the lives of those living with HIV and AIDS – among other chronic diseases.

New York, a leader in Health Information Exchange and Health IT  

New York’s Office of Health Information Technology Transformation coordinates health IT programs and policies across both public and private healthcare sectors.

“Management of complex HIV patients, or any patient, requires communication not only among the health care team, but also with the patients themselves.”  – Dr. Roberto Martinez, Medical Director of Quality for the NY State Department of Health’s Office of Health Information Technology Transformation

New York has been a leader in building health information exchange infrastructure to securely deliver data across an internet platform called the Statewide Health Information Network of New York (SHIN-NY), which is coordinated by NYeC.  In addition, the State has two regional extension centers whose purpose is to promote the meaningful use of certified electronic health record technology.  The SHIN-NYExternal Links Disclaimer, through Regional Health Information Organizations (RHIOs), continues to leverage health information exchange making data available at the point of service and improving patient care.  Patients are able to give appropriate consent for sharing their information knowing it will be safe and protected.

New York Digital Health Accelerator Program

To support the growth and access of electronic tools and resources, NYeC and the Partnership Fund for New York City have developed the New York Digital Health Accelerator. Eight companies were selected from a pool of 250 companies from 27 states and 10 countries.

The initiativeExternal Links Disclaimer is the largest funded health IT accelerator program in the country and opens access to SHIN-NY’s application programming interface (API), a layer on top of the health information exchange which securely provides clinical data to developers and entrepreneurs who have obtained appropriate security and consent.  This will allow technology developers to create products to improve patient health, such as care coordination software for a provider or medication adherence applications for patients.

The first class of the program has resulted in 17 pilots by 23 leading healthcare providers in NY and the creation of 41 jobs, with an additional 41 jobs to be created in 2013.

Taking a look back: HIV/AIDS Policy and New York’s Program Interventions beginning in the 1980’s

From the first reports of HIV in 1981, New York was at the epicenter of HIV/AIDS cases and quickly pioneered HIV/AIDS policy and programs.

During a period filled with confusion, fear, and stigma, the New York State Legislature in 1983 created the AIDS Institute within the New York State Department of Health to proactively address the epidemic.  The Institute is responsible for development and funding of HIV/AIDS services, including public and professional education, prevention, clinical care, and support programs.  It now also administers the State’s sexually transmitted disease and hepatitis C prevention programs and specialized care and support services.

By 1985, the New York State Department of Health (DOH) established Designated AIDS Centers in hospitals and anonymous counseling and testing at regional DOH locations. The State eventually launched a wide range of other programs, including an HIV Clinical Guidelines program in 1986 and an AIDS Drug Assistance Program the following year; in 1988 the Legislature approved a strong HIV Confidentiality Law.  Vanguard policy initiatives also addressed HIV discrimination, supported housing, infected health care workers, and immigrants.

The development of a continuum of services model encompassing education, counseling, testing and treatment, home health and long-term care support services, and programs for the uninsured was the next step. Grouping together primary care, HIV/AIDS testing and treatment, and substance abuse services and support for multi-service community agencies facilitated integrated care.

In 1992, the State began to permit syringe exchange to reduce HIV transmission among injection drug users (IDU). The State now has 21 harm reduction/syringe exchange programs. The results of this work include decreased needle use, decreased injection drug use, and a drop in the HIV infection rate from 52% in 1992 to less than 15% in 2002. The programs are also cost effective.  With an estimated lifetime treatment cost of about $500,000[1] per HIV infection, the state has realized hundreds of millions in cost savings and incalculable other benefits.

Legislation and policies in 1996-1997 initiated routine HIV counseling and recommended testing for all pregnant women, as well as routine HIV testing of all newborns. This resulted in the use of highly active anti-retroviral therapy (HAART) to dramatically reduce mother-to-child transmission of the virus from 25-30% of births in 1987 to 1.3% by 2008.

New York’s HIVQual HIV clinical quality improvement program became a national and international model, and the State’s highly respected HIV clinical guidelinesExternal Links Disclaimer continue to provide information about some topics that is not available elsewhere.

In September 2010, New York implemented revisions to its HIV testing law, becoming the first state to require an offer of HIV testing to every patient 13 to 64 years old regardless of risk factors. This led to a significant increase in HIV testing, and by the second half of 2011 more than 90% of newly diagnosed people had a scheduled appointment for follow-up care.

New York continues on a journey to provide higher quality care for all New Yorkers.  In the case of the HIV/AIDS population, it has involved a combination of planning, innovation, openness, regulatory and policy changes, and now leveraging Health Information Technology in unexpected ways to better coordinate care and empower patients to manage their health.

ONC would like to extend a special thank-you to Sonja Noring, MA and Roberto Martinez, MD from the NY State Department of Health who contributed to writing this blog.


[1] Schackman BR et al.  The lifetime cost of current human immunodeficiency virus care in the United States.  Medical Care 2006; 44(11):990-997.