Most of the focus in this blog so far has been on the systems and organization side. And that’s an important focus but it does leave out a considerable component. I’ve noted previously that HIV is both an individual health issue and a public health issue. Sometimes we seem to forget that the systems we put in place, the interventions we want to test, the measurements we take, all revolve around human beings. In this case they are human beings with HIV. As part of our work with NYLinks we have made special efforts to ensure that consumers (people who are living with HIV) are at the table and have a full voice. They are, after all, the real experts.
Consumers play a big role in the regional groups that we have put together. We have often taken the time to ask them, from their own perspective, to name one thing that has been the most important to them when it comes to getting into care (linkage) or staying in care (retention). They have consistently said that relationship is the most important. They have said that if their interactions with staff are negative, then it is a real driving force for staying away, and that if their interactions are positive it will often be a driving force in the other direction. And they have been clear that when they say relationship they mean more than just with their doctor.
As an exercise we often ask people to think about their own medical care. In fact we have an exercise which we sometimes do in groups where we tape numbers from 1 through 10 on the wall and ask people to think about their last experience with a medical provider and go and stand next to the number that reflects how they feel about that visit with 1 being pretty terrible and 10 being terrific. We’ve never done one of these where everyone is gathered around the number 10. Most of the time there is a distribution with a few people in the 8 to 10 area, a bunch in the 5 to 7 area and the rest in the 1 to 4 area. As we have done this exercise over the past few years there has been subtle movement toward the lower end. One of the nice things about this exercise is that it does not seem to matter whether you are a medical professional, an academic expert, someone with a Masters or PhD, or a consumer when it comes to the kind of care you get. We often end up with consumers standing next to medical doctors standing next to social workers all around the number 3.
There are any number of factors that enter into play when it comes to how we feel about our medical visits and instead of getting into those here I’d like to come back to what the consumers who have been involved with us point out. It’s the relationship. Consumers tell us that if they get a neutral or negative response from the person at the door, the receptionist, the person who rooms them, or some other staff person they come into contact with, that it carries over into and beyond the actual medical visit. Oddly enough, when it comes to looking at this from a systems perspective, most of the attention seems to fall on the medical providers themselves rather than on the support staff so we see a lot of information about making medical providers more patient friendly when, perhaps, that effort should be directed towards every person in the organization who has contact with patients.
Consumers tell us they want to feel welcomed by the place they are getting their care. I would argue that this is something we all want. Consumers that have struggled previously with getting into or staying in care have told us that it does not take much to move them in either direction as they wrestle with multiple issues, stigma, the stress of being diagnosed with HIV, and having to figure out what being HIV positive means.
I’m not suggesting that we drop everything else and focus only on the patient relationship but we should also not forget that we are dealing with people, regardless of why they are coming to see us, and that one of the simplest interventions we can implement is being welcoming.
Written by Steven Sawicki