Engaging patients in research

January 22, 2016

The “Help Us Discover Heroes” campaign running in Yale clinics and transit ads features real patients who have participated in clinical research. Their stories are also highlighted on yalestudies.org.

The Yale Center for Clinical Investigation is using a host of tools and approaches aimed at investigators and patients that will boost recruitment for clinical research.

In the last decade we’ve invested considerable resources to bolster clinical and translational research and the infrastructure that supports this work. With support from the School of Medicine, Yale-New Haven Hospital, Yale Medical Group, and our National Institutes of Health Clinical and Translational Science Award, the Yale Center for Clinical Investigation (YCCI) now provides approximately 1,500 services each year to 600 investigators. There are now more than 1,200 active therapeutic research studies currently in progress to explore treatments for conditions that affect large patient populations, as well as rare diseases for which it can frequently be difficult to find an open clinical trial.

Yale is home to world-class teams of translational scientists who have cutting edge facilities at their disposal. Yet their work, which leads to medical advances that widely benefit patients around the world, wouldn’t be possible without patients who volunteer for clinical trials. These men, women, and children are the unsung heroes of clinical research.

Along with other faculty members, Roy Herbst, MD, PhD, and his patient Ray Fitzgerald, appear in a video that YCCI recently produced as part of its effort to promote Yale research. The video can be viewed on YCCI’s website and YouTube.

Recruiting patients to participate in clinical research remains difficult. About 20 percent of clinical trials registered on clinicaltrials.gov never finish. This is not because the treatments aren’t effective or the side effects are too severe, but because of poor accrual. Participation rates remain particularly low for minorities and children.

Recognizing the critical role that patients play in clinical research, YCCI has made a targeted effort to engage patients in clinical research and to ensure that our research studies more accurately reflect the diversity of our nation. The “Help Us Discover Heroes” campaign that you’ll see running in Yale clinics and transit ads highlights the stories of real men, women, and children who have participated in clinical trials at Yale. YCCI is producing videos of some of these stories, which are also featured on yalestudies.org, our clinical trials website for patients. By paying tribute to the contribution of research volunteers, we hope to inspire others to participate in clinical trials so that discoveries can move forward.

YCCI is finding other ways to reach potential research subjects that take advantage of the growth of the hospital and the clinical practice. The Help Us Discover tab in MyChart, the patient portal in Yale’s electronic health record, directly links patients to research studies that are open to new accruals and allows them to build personalized profiles that include the kinds of trials in which they might want to participate. There is a planned media campaign to drive patients to this area of MyChart, but even without this publicity, almost 700 patients have already built research profiles in MyChart and approximately 100 of these have been enrolled in a clinical trial. YCCI has also opened a Recruitment Call Center that is staffed from Mondays through Fridays from 7 am to 7 pm, Saturdays from 10 am to 5 pm, and Sundays from noon to 5 pm. Staff members are available to respond to patient queries in English and Spanish, and in some cases to pre-screen patients for study eligibility. The center’s Cultural Ambassadors program, a partnership with Junta for Progressive Action and the African Methodist Episcopal Zion Church, is another avenue that helps investigators connect with study participants. Thanks to this collaboration, about 25 percent of the 7,000 individuals who have created Help Us Discover research profiles are identified as minorities.

These direct-to-patient recruitment strategies have had a major impact on our ability to get studies off the ground and are further aided by initiatives that leverage our informatics capabilities. Researchers now have access to an unprecedented wealth of clinical and genomics data. Yale’s electronic health record contains patient data available within the health system and a new Opt-Out policy allows this data to be used for research unless a patient opts out. The Joint Data Analytics Team has a dedicated group to handle research requests and quickly assess study feasibility or identify cohorts. Helix, Yale’s customized enterprise-wide data warehouse, also provides access to information that is valuable to research by drawing upon a variety of sources and housing the data in one place.

Taken together, this multipronged approach is helping us reach patients and tap into clinical data in new ways that are already yielding results. YCCI has also revamped its website, along with yalestudies.org, to make it easier for faculty and patients to find information and resources. This is good news, because these tools and resources ensure that our research enterprise continues to grow as we seek innovative ways of caring for our patients.