For more than 20 years, MMG's PACT
(Partnership for Access to Clinical Trials) team has led the charge
to raise awareness within patient and provider communities about
the National Institute of
Allergy and Infectious Diseases (NIAID) infectious disease
studies, conducted at the NIH Clinical Center in Bethesda, MD. In
their role as on-the-ground ambassadors, the PACT team directly
engages study participants, and acts as a support bridge between
clinicians and patients within the Washington, D.C. metro area.
With so many patients facing economic, education and language
barriers to health services, the work this team does is vital-and
the knowledge and expertise they have amassed is invaluable.
I recently had the pleasure of sitting with the PACT team for a
Q&A to compare notes on emerging trends and issues in
recruiting patients to participate in clinical research studies for
Helen West- Hello team! A recent analysis
by WalletHub identified the D.C. area as having the greatest
ethno-racial diversity among any large U.S. city. How does the high
level of diversity shape your recruitment efforts?
PACT Team - Hello back Helen! Without a doubt, the most precious
thing about our project is the diversity of the population we
touch. It's exciting and challenging. We are always learning
something new and evolving our approach on the most impactful ways
to educate and support diverse populations.
H.W. - Is there a specific group or population within the
larger area that serves as an interesting example of the barriers
you face within these diverse communities?
PACT Team - NPR did a story about the trend of successful
Ethiopians-doctors, lawyers, researchers, coming to the D.C. area.
Many have been drawn to the area because they love to follow and
discuss politics. They want to engage in coffee shops and other
neighborhood dwellings to debate policy positions. The Ethiopian
community is extremely close knit, and folks with these professions
are well known throughout the community.
Unfortunately, when it comes to HIV, there is a tremendous stigma
with the disease as "the worst thing you can have." With cancer
there is sympathy-not with HIV. No matter how someone became
infected, the strongly held belief is that they got HIV as a
punishment for having homosexual sex. Women who are HIV positive
are labeled prostitutes, so they won't come near educational
materials in public places, like health fairs.
The fear of being discovered is so powerful that it acts as a
barrier to seeking treatment. Potential study participants always
ask if they might be seen by other Ethiopians at the research
center. They even fear using an interpreter because they are too
afraid that person will disclose their status to their
H.W. - How do you make connections with patients and build
trust in that dynamic?
PACT Team - We have been down this path before. Fifteen years
ago, nearly all of the patients we encountered were Latino. They
would not consider research for many of the same reasons. That has
changed dramatically-we now have a strong relationship with the
community and testimonials from Latino patients about participating
in research studies. The Ethiopian community is in the same place
Latinos were 15 years ago. It takes time, consistency and respect
to earn trust. If you connect with the community, if you are real,
they will trust you.
H.W. - I imagine the PACT team is well ahead of the industry
in supporting the transgender community. Any recommendations for
engaging transgender patients in research?
PACT Team - There are many nuances that call for heightened
sensitivity here. For example, most medical history forms don't
have an option for transgender. So first, we establish mutual
respect by asking the patient how they prefer to be addressed,
introduce them that way, and use that shared understanding as a
bedrock to help pave the way with staff. The transgender patients
who we encounter tend to have outgoing personalities. If they have
a bad experience with a study, they will share that widely within
Many in the community believe there are two types of clinical
trials: studies by pharmaceutical companies-who just want to make
money, and studies by the government-which they feel can't be
trusted. Willingness to participate is growing, as long as they are
given respect. The transgende community has been asking for studies
that allow hormone therapies, which is a common exclusion criteria
in many studies.
We continuously adjust as these patients become more visible. As
an example, we recently gave a presentation to NIH staff about how
transgender patients want to be treated, and we are meeting next
month to shed light on this topic at the NIAID Outpatient
H.W. - We are hearing a lot
lately about generational differences among patients who are HIV
positive. Are you seeing differences, and is it affecting study
PACT Team - It is tough to see younger folks (18 to 25 years old)
who are newly diagnosed and think they are immortal. They just are
not processing of all the ramifications of HIV. The prevention
education resources are out there, but it's not a priority to them.
The focus is on enjoying life-even though they may be barely
surviving and sleeping on a friend's couch.
Compliance among younger patients is a huge issue. When they
start feeling well, they stop taking medication and get sicker and
sicker. One young man who had been carefully nursed back from being
deathly sick ordered herbs that were supposed to cure his HIV from
a website that promoted conspiracy theories about HIV and the
government. Now he doesn't want to take his meds anymore despite
both the overwhelming evidence supporting their benefit, and the
lack of evidence supporting the alternative medicine's
Older patients who are newly diagnosed have comorbidities and
get sicker faster. It is common that other conditions-diabetes,
arthritis, cardiac issues, have also been left untreated. Many are
taking care of their grandchildren and their parents, and are
dealing with other social issues on top of their own health
H.W. - As always, you are a tremendous resource for us. Thanks
so much for sharing the unique perspective you've gained from
engaging with these patients every day. We are proud of the work
you do and honored to work alongside you!