Receiving a medical diagnosis can be a nerve-wracking time of uncertainty and fear. Emotions can range from ecstatic about finally being able to put a name to what ails you, to despair over a disease or condition that may be life threatening.
For many people that initial conversation with a health care professional about a new diagnosis sounds like the buzz of white noise. All of these emotions cloud judgment and make it difficult to even hear what is being said, let alone understand it.
Imagine you’ve just received a devastating medical diagnosis. You’re sitting in the doctor’s office with complicated, maybe even scary, medical brochures, trying desperately to figure out what questions to ask. Then, someone asks you if you would be interested in participating in a clinical research study. A clinical study might be the last thing on your mind after you receive a diagnosis, but for many studies (and patients) the point of diagnosis—or soon after—is the crucial window that would allow a patient to be eligible for participation.
At the company where I work, MMG, we specialize in clinical trial patient recruitment. We understand how to write for the patient described above. We know what information they need, when they need it, and how they need to receive that information so that they can make the best informed decision possible.
We also know that asking someone to participate in a clinical study is a tough question—one for which the answer shouldn’t be considered lightly. Appropriate and timely communication on the part of health care professionals can make a real difference in how the question of participation is considered and answered. Sometimes, it takes more than a doctor or nurse informing the patient.
Enter the PACT team (Partnership for Access to Clinical Trials). The PACT program “…educates patients, providers, and community groups about clinical research studies and advances in treatments for infectious diseases such as HIV/AIDS [and] hepatitis C.” PACT serves as a communication bridge between patients in the Washington, D.C. metro area, and research clinicians from the National Institute of Allergy and Infectious Diseases (NIAID).
The program’s primary focus is to “…increase access to research for people who may be underrepresented in clinical studies.” The way the PACT team operates may seem simple, but it is incredibly valuable. Members of the team educate potential study participants in a way that is easily understood and makes the patient feel comfortable. They help arrange for services that patients may not even know are available to them, such as transportation. The PACT team listens—to doctors, to patients, to concerned loved ones. They answer questions patients are afraid to ask their doctors and they help the process of clinical trial participation seem less daunting and scary.
Although there is no doubt that the service provided by the PACT team is invaluable to the patients, it doesn’t take long to realize that PACT team members receive just as much value from the experience (if not more).
For more information about NIAID and its community partnership with the PACT team, watch this video, featuring a cameo from MMG’s Charlita Whitehead as she discusses her role with the PACT team and how far HIV research has come in the past few decades.
This post originally appeared on September 10 on MMG’s blog, the Healthyist.