Dr. Bruce Agins
Medical Director
New York State Department of Health AIDS Institute
"My career kind of paralleled the HIV epidemic." (1:06)
I’m Bruce Agins. I am the Medical Director of the New York State Department of Health AIDS Institute, which is the unit within the Health Department that coordinates all HIV/AIDS programs. I run the medical office of the AIDS Institute, which is a unique kind of entity within government, in which our activities focus on guidelines development and implementation, quality of care monitoring, and quality improvement programs, and both clinical and consumer education.
I’m an infectious disease [ID] specialist. And my career kind of paralleled the HIV epidemic, and I went into infectious disease when everything under the purview of ID specialists was treatable. And HIV, which was becoming prominent during my internship and residency, it wasn’t clear whether HIV was an infectious disease. But over time, during training, developed a lot of hands-on experience with HIV, and wound up on staff at the county hospital in Nassau County in New York.
"If you asked providers what are their top priorities, antiretroviral therapy is always first on the list. But on the consumer list it is mental health." (1:44)
The program has grown over time. It’s really a huge program. And I think one of the additions that has been most meaningful began in the year 2000 where we created a consumer advisory committee for the quality program as well. And that’s just given us a new dimension and vibrancy. As we brought the consumers together, we were able to identify with the help of some staff some individuals who had been through a program in New York, it’s called the Leadership Training Institute, which has trained over 500 people living with HIV in skills to be more participatory in public health and community activities. So this group came together. I’ll give you two examples of eye openers. If you asked providers what are their top priorities, you know, antiretroviral therapy is always first on the list. But on the consumer list it was mental health. And then, as we talked about mental health, the second thing that came up was about language. And we thought, as not just clinical providers, but as public health people, that we were sensitive to the language and not using the term “mental illness,” but using the word “mental health.” While the consumers told us that mental health for them also is associated with stigma and discrimination and makes them uncomfortable. And that when you say, “Are you going for your mental health visit or your mental health appointment?” that’s a turn-off for them, and they don’t want to engage in any way. And they like to use the term “emotional well-being.” You know, “How are you doing? How are things going? Are you coping? How’s your emotional well-being?” So it really changed our way of thinking and changed our materials as well that we produced.
"It’s not a question of knowledge and technical competency. It’s an issue of service, coordination, system strengthening, and the organizational components of health care that need to really be focused on." (1:51)
“Quality.” Everybody uses the same definition. Are we either meeting or exceeding the expectations of our customers? And are we achieving desired health outcomes? We need to find people who have HIV in our programs, get them into care, get them on treatment, for their own health, to help prevent further transmission. It’s an issue of service, coordination, system strengthening, and the organizational components of health care that need to really be focused on. So, we use the same methods and models. We use the Model for Improvement. We use PDSA cycles. We have a third component in our model that we developed in New York and that we use in our work, which is what we call our infrastructure component. Because when we piloted our program nationally, we used the model, and we worked for 18 months in Pennsylvania with six clinics. And they made great progress. And when the consultant finished, we had a little gap in funding, the consultant went away. And when we launched the national project a year later, some of those facilities had stopped doing any quality improvement. And so we sat down and really thought through and brainstormed about what did we need to include in this model. And that’s our infrastructure component. And those are the things that it takes to make quality happen. It’s the quality plan. It’s the quality committee. It’s the leadership component. It’s the consumer involvement. It’s making sure that all the staff are aware. But there’s a way that we have of packaging it and giving the clinics guidelines and an assessment checklist that they can use to measure how they’re doing in these infrastructure components. And we think that that’s a key element of sustainability.
"Retention’s become a major issue." (0:32)
The hottest issue is what we call patient retention. It’s really continuity of care. We see no-show rates, like in New York City, that range as high as 40 percent. Probably 25 to 30 percent of patients don’t come regularly to clinic. And we hear this in every part of the country. Integrating prevention into care has been another issue. It’s different when you're treating people that have already been through several regimens, and who’s, you know, heavily treatment-experienced. That’s the third area. Information systems is another, and coordination of care. I’d say those are the major areas.
"The AIDS Care Model was the Chronic Care Model before the Chronic Care Model was invented." (1:12)
There’s something really special and unique about working in the HIV field which is really related to the commitment and the passion of the people who provide the care. They’re in it because they’re committed to public health in some way or another. And whether it’s connected to a special population, whether it’s connected to a special interest in the disease, or a manifestation of the disease, or just general public health and commitment to the underserved, you're just dealing with people who care about what they’re doing. There’s a sense of partnership with the community and there’s a sense that we’re all advocates together in fighting HIV disease.
The AIDS Care Model was the Chronic Care Model before the Chronic Care Model was invented, in that community-based agencies pre-dated the medical agencies, because there was no medical treatment. So there were already community resources for HIV, what we used to just call the “case management model,” where in the ideal sense, you’d have somebody from the community agencies with you and do some care planning. And then, of course, involving the patient or client directly in those discussions. And that’s, I think, what kept so many of us involved through the years where we were dealing with people dying. There was just a commitment all embedded in the Chronic Care Model.
11/14/2006
