Community Organizing Works for Health Information Technology Systems Too

To most Americans, “Health Information Technology” (HIT) is a murky domain where policy wonks conspire with computer nerds to manage our healthcare. But community-based organizations need to think about HIT both as a powerful tool for improving community health, and as a lever that can be activated through traditional community organizing principles. For community groups working to end hepatitis B disease, this has proved particularly true.

Hepatitis B is the most common cause of liver cancer and the greatest health disparity for Asian Americans and Pacific Islanders (API). However, there is a safe vaccine to prevent hepatitis B and effective medications can prevent liver cancer. But because we have failed to effectively utilize these medical solutions, an estimated two out of three chronically infected individuals don’t even know they are infected, and hepatitis B is very often left untreated. .

The Hep B FreeExit Disclaimer campaign was started in San Francisco where API residents comprise 34% of the city's population. The citywide campaign engages healthcare organizations, community groups, and businesses around the goal of making San Francisco the first hepatitis B free city in the nation. Toward that end, Hep B Free San Francisco has emphasized the need to improve hepatitis B testing and vaccination practice patterns among clinicians. One of the campaign’s allies, Dr. Kelly Pfeifer, Chief Medical Officer of the San Francisco Health Plan, laid out the “ABCD’s” of what motivates a clinician to change their practice routine: “A” represents the Altruism of doctors to take better care of their patients; “B” represents Bottom-line financial effects on their practice; and “C and D” represent Comparative Data for measuring performance.

To tap into these motivational factors, the AsianWeek FoundationExit Disclaimer,as a community partner and co-founder of Hep B Free, has led a multi-phase strategy that starts with community engagement outside the traditional healthcare field, and ultimately creates working collaborations with health systems to develop and encourage more universal adoption of hepatitis B practice guidelines and HIT features supporting hepatitis B prevention and management.

The Hep B Free Clinicians Honor Roll, launched in 2009, is the first phase of the strategy. It lists and publicly recognizes primary care practitioners who pledge to follow hepatitis B screening guidelines .

Among other things, the QIC seeks to improve the use of HIT for gathering data on hepatitis B practices across all participating health care systems. Accomplishments include collectively prioritizing data points for hepatitis B measures, conducting a baseline assessment amongst all San Francisco health systems on hepatitis B policies and resources, and unprecedented collection and evaluation of provider-reported HBV and hepatocellular carcinoma (HCC) screening practices.

The HHS Office of Minority Health is currently supporting pilot HIT projects at two QIC member institutions in San Francisco to use Electronic Medical Records (EMR) to screen, identify, monitor and treat hepatitis B infection. Members of the San Francisco Hepatitis B QIC are actively involved in advising these pilots. Their participation increases buy-in among the QIC for these approaches, familiarizing members with the implementation of HIT changes that will, hopefully, ease implementation of similar EMR activities in their own practices and systems in the future.

Hep B Free’s efforts in San Francisco show that community leadership is effective in developing HIT programs for improving public health. Community groups have the legitimacy to bring disparate and competing interests together to collaborate on developing a shared solution. By prioritizing community interests over competition, proprietary systems are not developed sporadically with only limited implementation. On the path to ending hepatitis B, community efforts have helped lead the establishment of a shared, collaborative platform for using HIT to make hepatitis B prevention care and treatment universal.