“Consumer Involvement in a Government- Sponsored HIV Quality Improvement Program” Clemens Steinbock, MBA Director for Quality Initiatives New York State Department of Health 001/ Johnson V. 1, Lopez M. 2, Steinbock C. 3, Tietz D. 3, Perou J. 3, Agins B. 3 1 Capital District African American Coalition on AIDS (CDAACA), Albany, United States, 2 Community Healthcare Network, New York, United States, 3 New York State Department of Health, AIDS Institute, New York, United States

AIDS Conference, TorontoNew York State Department of Health New York State HIV Quality of Care Program Program implemented in 1991 building on the philosophy of quality improvement (shift from quality assurance paradigm) Responsibility for systematic monitoring of quality of clinical care and services provided to all individuals with HIV; 38,000 individuals live with HIV in New York State More than 35 clinical and non-clinical indicators, linked to optimal HIV care, are developed Routine reviews of key measures at over 150 HIV healthcare facilities; public releases of HIV performance data in 2000 and 2004

AIDS Conference, TorontoNew York State Department of Health Dimensions of Quality Technical Quality Provider Perception of Quality of HIV Care Experience Quality Consumer Perception of Quality of HIV Care Leonard Berry, Texas A&M University, IHI conference 2001

AIDS Conference, TorontoNew York State Department of Health Key Question How can consumers, the ultimate recipients of HIV care, be actively and systematically be involved in a statewide quality program?

AIDS Conference, TorontoNew York State Department of Health Initial Involvement Activities Integration of consumer involvement concept in quality expectations for all HIV programs (‘Quality Program Standards’) Consumer Guide for public releases of statewide performance scores Development of Consumer Curriculum to learn about quality in HIV care Provider workshops on how to involve consumers in quality related activities

AIDS Conference, TorontoNew York State Department of Health NYS Consumer Advisory Committee Goals: To educate PLWHAs about current and future quality of care activities To create a forum to routinely and directly listen to affected communities about quality of care issues To advise the state about policy issues related to quality of HIV care

AIDS Conference, TorontoNew York State Department of Health Consumer Committee Structure Membership: up to 25 members representing various HIV communities in New York State (geographic region, gender, race, ethnicity and risk-groups) Committee Member Selection: Identification of PLWHA leaders and structured nomination process Meeting Structure: quarterly meetings (since July 2002) with frequent topic-specific sub-committees; By-laws have been written and approved by committee members Committee Co-Chairs: Two consumer Co-Chairs; 1x appointed by NYSDOH,1x elected by fellow committee members

AIDS Conference, TorontoNew York State Department of Health Consumer Committee Activities  Provider survey to assess consumer involvement in quality of care programs (63/114 responded)  Development of best practice guide how to obtain consumer feedback through a structured approach  Development of Patient Health Journal to allow consumer to maintain their HIV records

AIDS Conference, TorontoNew York State Department of Health Consumer Committee Activities  Consumer participating in statewide provider quality committees as equal participants  Participation in the development of HIV-specific clinical guidelines, e.g., review of upcoming chapters, participation in committee meetings  Review of upcoming publications, e.g., consumer satisfaction surveys, performance data releases

AIDS Conference, TorontoNew York State Department of Health New York State Department of Health Consumer Quality of Care Committee Members June 2006

AIDS Conference, TorontoNew York State Department of Health Lessons Learned continuous feedback for governmental quality of care programs is critical to enhance the quality of HIV care direct dialogue with consumers to raise community issues not identified by provider groups or staff benefit to allow participation in the selection and development of indicators to measure the quality of care it works…

AIDS Conference, TorontoNew York State Department of Health Are you prepared for the future?

AIDS Conference, TorontoNew York State Department of Health ‘We are not hosts but guests in the patients’ lives.’ Don Berwick ‘Every patient is the only patient.’ Art Berarducci

AIDS Conference, TorontoNew York State Department of Health Acknowledgements NYS Department of Health: Bruce Agins, MD Humberto Cruz Dan Tietz JoAnn Perou Joe Rukeyser Committee Members: Vanessa Johnson Michelle Lopez Julian Brown

AIDS Conference, TorontoNew York State Department of Health Contact Information Clemens Steinbock, MBA New York State Department of Health AIDS Institute 90 Church Street—13th Floor New York, NY phone 001/ fax 001/