Breakthrough Patient Recruitment

: Engaging Patients for Infectious Disease Studies: A Q&A with MMG’s PACT Team

Engaging Patients for Infectious Disease Studies: A Q&A with MMG’s PACT Team

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PACT1For 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 infectious diseases.

 

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 community.

 

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 their community.

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 Clinic.

 

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 participation?


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 effectiveness.

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 problems. 


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!

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