Abstract 4352: Fostering research participation through NCI's Cancer Moonshot Biobank engagement portal

Abstract

Patients and healthcare providers are important partners in cancer biobanking and research. Until now, however, there have been a limited number of scalable approaches to engage patients and providers as true collaborators in biobanking studies. The National Cancer Institute's Cancer Moonshot Biobank is a new engagement-centered project whose goal is to accelerate cancer research on drug resistance and sensitivity. This ambitious undertaking will involve the collection and distribution of longitudinal cancer biospecimens from over 1000 research participants receiving standard of care therapy at participating NCI Community Oncology Research Program (NCORP) institutions. Participants will be asked to donate blood and tissue at various time points including at baseline, during treatment, and at progression, if applicable. Engagement is a core component of the project given the longitudinal nature of the project, and the importance of participants and providers to its success. We define engagement as the establishment of an ongoing trusting and mutually vested relationship between study participants, healthcare providers and the Biobank. The three main engagement components of the Cancer Moonshot Biobank are: 1. External Scientific Panel (ESP): An extramural team of physicians, patient advocates, communication and biobanking experts who give input on various aspects of Biobank engagement 2. Local engagement activities at NCORP Sites 3. An online Participant and Provider Engagement (PPE) portal The PPE portal will be the main platform for direct interface between the Biobank and its participants, healthcare providers, as well as the public, and will serve as an archetype within NCI for the development of a unified portal for future NCI projects. Through the PPE portal, participants and providers will receive program updates, securely access documents including their biomarker test results and signed consent forms, and access educational material and other community resources. We describe ideation, design, and content creation for the PPE portal. Strategies for usability testing, integration of feedback, procedures for design and content iteration, as well as lessons learned are also discussed. Through the creation of NCI's PPE portal we aim to provide a valuable resource to participants and providers who are part of the Cancer Moonshot Biobank, while at the same time facilitating adoption of online engagement strategies within NCI and beyond. Citation Format: Esmeralda Casas-Silva, Helena J. Ellis, Veena Gopalakrishnan, Carol J. Weil, Abhi Rao, Lokesh Agrawal, Ping Guan, Natalie Madero, Jane W. Wanyiri, Jeffrey McLean, Mark A. Jensen, James Suh, Sean McDermott, P. Mickey Williams, Helen M. Moore, Laura Kadamus, Ainsley Adao, Rhett Beattie, Frank Ali, Debapriya Sarkar. Fostering research participation through NCI's Cancer Moonshot Biobank engagement portal [abstract]. In: Proceedings of the Annual Meeting of the American Association for Cancer Research 2020; 2020 Apr 27-28 and Jun 22-24. Philadelphia (PA): AACR; Cancer Res 2020;80(16 Suppl):Abstract nr 4352.

Promoting patient engagement in cancer genomics research programs: An environmental scan

“…Key themes reflected the idea that engagement should be: 1) interpersonal, 2) reciprocal, and 3) continuous. The interpersonal theme appears in all four definitions and is reflected in the use of terms such as “trusting” ( Casas-Silva et al, 2020 ), “relationship”( Casas-Silva et al, 2020 ), and “authentic partnership” ( Lemke et al, 2010 ) between study participants, communities, and researchers. Reciprocity is captured in three of the four definitions with terms such as “mutual respect”( Lemke et al, 2010 ), “mutually vested” ( Casas-Silva et al, 2020 ), “mutually beneficial” ( National Institutes of Health, 2020 ) and “bi-directional” ( National Institutes of Health, 2020 ) interactions.…”

“…The interpersonal theme appears in all four definitions and is reflected in the use of terms such as “trusting” ( Casas-Silva et al, 2020 ), “relationship”( Casas-Silva et al, 2020 ), and “authentic partnership” ( Lemke et al, 2010 ) between study participants, communities, and researchers. Reciprocity is captured in three of the four definitions with terms such as “mutual respect”( Lemke et al, 2010 ), “mutually vested” ( Casas-Silva et al, 2020 ), “mutually beneficial” ( National Institutes of Health, 2020 ) and “bi-directional” ( National Institutes of Health, 2020 ) interactions. The continuous theme related to “retaining” ( Khodyakov et al, 2018b ) participants and “ongoing” ( Casas-Silva et al, 2020 ) interactions throughout “all phases” ( National Institutes of Health, 2020 ) of the research process.…”

“…Reciprocity is captured in three of the four definitions with terms such as “mutual respect”( Lemke et al, 2010 ), “mutually vested” ( Casas-Silva et al, 2020 ), “mutually beneficial” ( National Institutes of Health, 2020 ) and “bi-directional” ( National Institutes of Health, 2020 ) interactions. The continuous theme related to “retaining” ( Khodyakov et al, 2018b ) participants and “ongoing” ( Casas-Silva et al, 2020 ) interactions throughout “all phases” ( National Institutes of Health, 2020 ) of the research process. However, the definitions focused on different phases of the research process with only one focused on all phases of the research process, including the design, conduct, and uptake of research ( National Institutes of Health, 2020 ).…”

“…Each research program carried out different study participant engagement strategies to meet enrollment goals, align with their conceptualization of engagement (if described), and overcome known barriers to participation in cancer genomics research. Every research program described opportunities for patients to be involved in the design of their program and its research, including the use of advisory boards, community champions, townhall meetings, deliberative democracy, one-on-one feedback sessions; and human centered-design to guide the strategies they use to engage study participants ( Lemke et al, 2010 ; McCarty et al, 2011 ; Khodyakov et al, 2018a ; Casas-Silva et al, 2020 ; All of Us Research Program, 2021; O’Daniel et al, 2022 ). We identified five categories of strategies that programs use to engage patients as study participants.…”

“…The programs used digital communications to share information about cancer, genomics, and cancer research; visually depict the steps entailed with participating and explain how long each step should take; and help participants enroll in their study, complete electronic consents, share electronic health records, complete health surveys, and receive individual-level results and aggregate-level study findings. As an example, the Cancer Moonshot Biobank uses its website to support recruitment, post study and research updates, and provide access to a secure patient portal for participants’ receipt of individual biomarker reports ( Casas-Silva et al, 2020 ; Casas-Silva et al, 2021 ). Some programs tailored their digital communications to reach diverse racial and ethnic populations, including by providing a Spanish version of the website ( All of Us Research Program, 2022 ; Count Me In, 2022 ; National Cancer Institute, 2022f ; National Cancer Institute, 2022a ), including images that reflect a diversity of demographics ( All of Us Research Program, 2022 ; Count Me In, 2022 ; National Cancer Institute, 2022f ; National Cancer Institute, 2022a ; National Cancer Institute, 2022e ; National Cancer Institute, 2022g ), and explicitly stating their commitment to promoting diversity and inclusion in research ( CSER, 2022b ; CSER, 2022a ).…”