E-Newsletter - March 2024
An Alliance Initiative

Great Start for PEP:
ALLIANCE Participant Engagement Portal

PEP, the Alliance Participant Engagement Portal, is an effort launched under the ICAREdata® project within the Alliance Data Innovation Lab that provides an innovative new way to keep clinical trial participants engaged at key touchpoints throughout their trial participation and after. The bidirectional communication at key touchpoints during the trial is a pillar of PEP functionality and capabilities.

To date, more than 800 people have joined PEP and about 40 percent of them have completed at least one PEP survey. The Patient Assessment of Life survey developed by Alliance is one of the surveys. It contains questions on demographics and the social determinants of health. Of late, more people have expressed concerns about affording food, bills, and transportation to doctor’s appointments. This has led the PEP team to update resources on the PEP website, making it more comprehensive. Participantes will be asked in a future electronic feedback survey if they found that extra information helpful.

The PEP team has also conducted focus groups across the country with diverse populations, including people from inner city and rural areas as well as those who speak Spanish. Participants interviewed expressed positive comments about the information found on PEP. They spoke about the quality of the information and how it told them, in easy-to-understand language, what they needed to know to stay informed. Future plans include expanding PEP into other clinical trials such as potential trial-related surveys for social determinants of health and other demographic information.

To learn more about how PEP works, check out these public websites:

The Alliance gratefully acknowledges the MITRE Corporation, Genentech Corporation, and former Alliance Interim Group Chair Suzanne George, MD, for their work and support in creating the PEP. It is led by Nancy Campbell, MSM, RN, Associate Director of Operations, ICAREdata, with suport from Electra Paskett, PhD, Principal Investigator and Program Director of the Alliance Cancer Control Program, and the Alliance Patient Advocate Committee. Additional information about PEP can be obtained at pep.info@alliancepep.org.


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