Finding a good doctor to manage HIV probably matters a lot, but finding a good doctor, or any useable or reliable information about a particular doctor, is almost impossible. Here: 5 tips on finding a good HIV physician.
Every individual seeking medical care wants to find a “good” doctor. HIV-infected persons are no different in that regard, and, at least arguably, need a good doctor more than, say, someone seeking an occasional “executive physical”. By good, most persons mean that they want a physician who is knowledgeable, experienced, caring, and, ideally, a “good listener”. Of course, each individual prioritizes these characteristics differently. So, for instance, seeking out a recognized “expert” may be more important to some than to others, whereas outstanding humanistic qualities may be prioritized higher than number of publications by other individuals.
But, does it matter, or--phrased differently-- does it make a measureable difference in outcome in a clinically relevant manner, whether a doctor caring for HIV-infected persons is “good” versus, say, “alright” or “average”? After all, there are a number of well-respected guidelines, such as the US Department of Health and Services (DHHS) Guidelines,1 that are written in large part to help raise the quality of care delivered by all doctors caring for HIV-infected persons. And if it does matter, how can an HIV-infected person find a good doctor?
Fortunately, there have been a number of studies specific to HIV that have attempted to answer questions such as “does experience matter?”. One of these2, published in 2009, surveyed physicians with different levels of training and expertise to see how many antiretroviral prescribing errors were made on ten hypothetical clinical scenarios. Antiretroviral management is one of the most important aspects of caring for HIV-infected persons. The average percentage of correct responses was 33% for resident physicians (doctors in training), 37% for attending physicians, and 93% for Infectious Diseases or HIV specialist physicians. In other words, number of years of general MD experience did not matter nearly as much as being in a field with high exposure to HIV-infected persons.
Another study, specific to internal medicine residents in training, found that 50% of them reported at least 30 encounters with HIV-infected persons in the last year; and 77% reported that they planned to care for HIV-infected persons in the future.3 However, 39% also reported that they did not feel competent to provide HIV outpatient care. Furthermore, this perception of lack of competency for HIV outpatient care was higher than for non-HIV-related issues. Presumably, those who reported that they planned to care for HIV-infected persons but did not feel competent to do so expected to get substantial “on the job training.”
So now that it seems that HIV-specific training does matter, how does an HIV-infected person find a good doctor? To answer this question, I entered the following search terms into Google: “how to find a good HIV doctor”. One of the first hits was an article published in HIVplusmag.com.4 That article suggested that I start by going online to the HIV Medicine Association (HIVMA) website. I am a member of HIVMA; in fact, I am the HIVMA representative to the Infectious Diseases Society of America (IDSA) Public Health Committee. Imagine my surprise then, when I discovered that my name was nowhere to be found under “find an HIV provider” listing for Detroit, where I practice. There were 4 doctors listed, all of whom do see HIV-infected persons. However, only 2 of the 4 would be considered “high volume” providers (ie, more than 200 active HIV-infected persons in care), and none of the 4 has published extensively in the HIV field. In addition, no ratings, comments, or health care grades were given for the 4, making it impossible for anyone to determine, from the information listed, anything useful about them (all of whom are very good, in my opinion).
Getting back to the HIVplusmag.com article. . . it also suggested that I check ratings at a number of sites. So, first I tried ZocDoc.com. I looked under Infectious Diseases, and found more than 30 names listed in Detroit, including my own. However, no additional information was listed. When I entered either HIV/AIDS consultation, or HIV/AIDS Follow Up as a reason for the visit, no names appeared. In addition, when I entered “Primary Care Doctor,” I was not given the option of choosing HIV care as the reason for a visit. There are very many excellent Family Medicine and Primary Care doctors who specialize in HIV care, but I was not able to find their names on this site.
The next site I tried was RateMDs.com. I entered my name, found it, and discovered that I was rated 4 out of 5 by a computer algorithm that used something called “Birds of a Feather” information that, apparently, is based on “the number of 2012 Medicare billings for the same patients that two health care providers had in common within a month.” As far as I can tell, no actual patient rated me. Finally, I searched HealthGrades.com. This time, I found that 1 actual patient had taken the time to rate me (5 out of 5 stars). To that one individual, I say, “Thank you very much for taking the time to rate me, and thank you especially for the kind words and insight.”
Summarizing what I have written in this article so far, finding a good doctor to manage HIV probably matters a lot, but finding the name of a good doctor, or any useable or reliable information about a particular doctor, is an almost impossible task. Note that I did not call any local HIV support groups, but I did check out the website of one of the area’s largest HIV support group, to no avail.
Here then, is my advice about how to find a good HIV doctor:
1. Don’t waste time on any of the “rate the doctor” websites. Instead, make a phone call to a local HIV support groups to see if anyone will give you a few names. Ask for “HIV experts”, whether they are ID-trained or not. The key is to get 3 – 5 names.
2. In addition, find the 2 – 3 largest hospitals in town, and either call or go to their websites. Ask for (or find) the names of Infectious Diseases physicians who treat HIV-infected persons.
3. With the list of names in hand, go onto the PubMed website, enter the names, and get an idea of the number of publications each doctor has, and what those publications are. Doctors who publish are not necessarily “good” in the sense that most patients care about, nor are doctors who do not publish necessarily “bad” or “inferior.” However, doctors who publish are more likely to be active in a particular field, and are much more likely to be viewed as “experts” by their colleagues than doctors who do not publish.
4. Call the office of the 2 – 3 “finalists,” and ask how many active patients they have. I would suggest a minimum of 200 as a surrogate for expertise. The literature suggests that more is better, but often stops “counting” above 50 active patients.5
5. Finally, get an appointment with 1 or more of the finalists, explain what is important to you, assess everything (office staff, environment, humanistic qualities, waiting time, etc), and make a decision. If you have found a good doctor and are moving out of town, ask that doctor for recommendations. Chances are your current doctor will know another good doctor in the area to which you are moving.
The time spent finding a good doctor for HIV will likely pay dividends for many years to come.
1. Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and
2. Arshad S, Rothberg M, Rastegar D, et al. Survey of physician knowledge regarding antiretroviral medications in hospitalized HIV-infected persons. J International AIDS Society. 2009;12:1-10.
3.Phillips KA, Cofrancesco Jr J, Sisson S, et al. A multicenter study of internal medicine residents’ perceptions of training, competence, and performance in outpatient HIV care. AIDS Patient Care and STDs. 2010;24:159-164.
4. Garcia M. How to find the right doctor if you’re HIV-positive. HIVplusmag.com. 2013, October 29, 2013.
5. Keith KV, Hogg RS, Singer J. Adherence to clinical guidelines for the therapeutic management of HIV disease. Clin Investigative Med. 1997;20:381-387.