Maryland

Representing: Caregivers

As an administrative healthcare professional, Shawanna Jackson has worked in various administrative roles at SUNY-Downstate, NIH, and presently works at Johns Hopkins. She currently serves as a co-investigator on a study that focuses on improving patients’ experiences as they manage perioperative pain. She has seen amazing things done because of medical research at all of these institutions; she is a strong proponent of patient-centered outcomes research, and this was birthed not only through years of work experience, but also because of her present role as patient advocate/healthcare proxy for her sister. After being a medical mystery for over two years, in 2012, her sister was diagnosed with Huntington’s disease. This diagnosis caught them completely off guard because: 1) it’s rare in African Americans and 2) genetics indicate this disease was passed down from their father, and he died in the mid-1980s with no sign of the disease. During her sister’s process of diagnosis, which included being examined at some of the top institutions in the world such as Columbia, Cornell in New York, Jackson realized there is a critical knowledge gap in minority groups in terms of genetic testing and rare diseases. It made her wonder why genetic testing wasn’t done sooner, who else had these same experiences, and how this process could have been done better. In 2013, she took advantage of the opportunity to become a merit reviewer and recently had the pleasure of serving as an in-person reviewer in the spring cycle. She realized this was an appropriate platform for offering a patient/stakeholder perspective to help make a difference in research. For her sister’s case, she solely had to depend on research and correct the negative biases toward research within her own family. Historically, minorities are the least likely to participate in research because of the stigma associated with it. In some healthcare communities, scientists miss the opportunity to educate the community through research because many focus on providing incentives as a way to gain the interest of participants for recruitment. While incentives are novel, starting with education in minority communities is the missing component. Understanding that this population’s participation in research can change the future of medicine is more valuable than incentives to many. She looks forward to actively serving in various capacities informing, engaging, communicating, and partnering as it relates to the overall mission of PCORI.