Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium

O’Daniel, Julianne; Ackerman, Sara; Desrosiers, Lauren; Rego, Shannon; Knight, Sara J.; Mollison, Lonna; Byfield, Grace; Anderson, Katherine; Danila, Maria I.; Horowitz, Carol R.; Joseph, Galen; LaMoure, Grace L.; Lindberg, Nangel M.; McMullen, Carmit K.; Mittendorf, Kathleen F.; Ramos, Michelle; Robinson, Mimsie; Sillari, Catherine H.; Madden, Ebony

doi:10.1016/j.gim.2022.01.008

Cited by 8 publications

(3 citation statements)

References 33 publications

(37 reference statements)

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“…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.…”

Section: Resultsmentioning

confidence: 99%

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

et al. 2023

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Background: A national priority in the United States is to promote patient engagement in cancer genomics research, especially among diverse and understudied populations. Several cancer genomics research programs have emerged to accomplish this priority, yet questions remain about the meaning and methods of patient engagement. This study explored how cancer genomics research programs define engagement and what strategies they use to engage patients across stages in the conduct of research.Methods: An environmental scan was conducted of cancer genomics research programs focused on patient engagement. Research programs were identified and characterized using materials identified from publicly available sources (e.g., websites), a targeted literature review, and interviews with key informants. Descriptive information about the programs and their definitions of engagement, were synthesized using thematic analysis. The engagement strategies were synthesized and mapped to different stages in the conduct of research, including recruitment, consent, data collection, sharing results, and retention.Results: Ten research programs were identified, examples of which include the Cancer Moonshot Biobank, the MyPART Network, NCI-CONNECT, and the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. All programs aimed to include understudied or underrepresented populations. Based on publicly available information, four programs explicitly defined engagement. These definitions similarly characterized engagement as being interpersonal, reciprocal, and continuous. Five general strategies of engagement were identified across the programs: 1) digital (such as websites) and 2) non-digital communications (such as radio broadcasts, or printed brochures); 3) partnering with community organizations; 4) providing incentives; and 5) affiliating with non-academic medical centers. Digital communications were the only strategy used across all stages of the conduct of research. Programs tailored these strategies to their study goals, including overcoming barriers to research participation among diverse populations.Conclusion: Programs studying cancer genomics are deeply committed to increasing research participation among diverse populations through patient engagement. Yet, the field needs to reach a consensus on the meaning of patient engagement, develop a taxonomy of patient engagement measures in cancer genomics research, and identify optimal strategies to engage patients in cancer genomics. Addressing these needs could enable patient engagement to fulfill its potential and accelerate the pace of cancer genomic discoveries.

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Section: Resultsmentioning

confidence: 99%

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

et al. 2023

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“…However, the study suggested that having an intermediary between healthcare providers and patients can facilitate communication and improve satisfaction among both parties. In particular, a community advisory board concerning genetic conditions, which serves as an intermediary, can enhance healthcare quality and promote patient safety [40]. Moreover, advocacy efforts are pivotal in driving policy changes and securing resources for genetic healthcare.…”

Section: Main Theme Subthemementioning

confidence: 99%

Navigating the Genetic Frontier for the Integration of Genetic Services into African Healthcare Systems: A scoping review

Kamga,

Fonkam,

Nguefack

et al. 2024

Preprint

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Background: The integration of genetic services into African healthcare systems is a multifaceted endeavor marked by both obstacles and prospects. This study aims to furnish evidence-based recommendations for policymakers and healthcare entities to facilitate the effective assimilation of genetic services within African healthcare systems. Methods: Employing a scoping review methodology, we scrutinized peer-reviewed studies spanning from 2003 to 2023, sourced from PubMed, Scopus, and Africa-wide databases. Our analysis drew upon eight pertinent research studies conducted between 2016 and 2023, encompassing diverse genetic topics across six African nations, namely Cameroon, Kenya, Nigeria, Rwanda, South Africa, and Tanzania. Results: The reviewed studies underscored numerous challenges hindering the implementation of genetic services in African healthcare systems. These obstacles encompassed deficiencies in disease awareness and education, impediments to genetic testing, resource scarcities, ethical quandaries, and issues related to follow-up and retention. Nevertheless, the authors also identified opportunities and strategies conducive to successful integration, emphasizing proactive measures such as community engagement, advocacy, and the fostering of supportive networks. Conclusion: The integration of genetic services in Africa holds promise for enhancing healthcare outcomes but also poses challenges and opportunities for healthcare and biotechnology enterprises. To address gaps in disease awareness, we advocate for healthcare providers to invest in educational initiatives, forge partnerships with local institutions, and leverage digital platforms. Furthermore, we urge businesses to innovate and devise cost-effective genetic testing models while establishing online forums to promote dialogue and contribute positively to African healthcare.

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“…Achieving equity in return of results requires facing barriers to benefit for underserved and minoritized populations. As many scholars have noted, populations of non-European ancestry are underrepresented in genomic research and the resulting databases (1,20,63,78,81). Because some risk variants and genetic diseases vary in prevalence by ancestral group, the failure to include adequate numbers of individuals of non-European ancestry can lead to omission of variants important in those populations (1) or misunderstanding of the clinical implications of identified variants (68).…”

Section: Health Equity and Inclusionmentioning

confidence: 99%

Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal

Wolf

Green

2023

Annu. Rev. Genom. Hum. Genet.

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Genome sequencing is increasingly used in research and integrated into clinical care. In the research domain, large-scale analyses, including whole genome sequencing with variant interpretation and curation, virtually guarantees identification of variants that are pathogenic or likely pathogenic and actionable. Multiple guidelines recommend that findings associated with actionable conditions be offered to research participants in order to demonstrate respect for autonomy, reciprocity, and participant interests in health and privacy. Some recommendations go further and support offering a wider range of findings, including those that are not immediately actionable. In addition, entities covered by the US Health Insurance Portability and Accountability Act (HIPAA) may be required to provide a participant's raw genomic data on request. Despite these widely endorsed guidelines and requirements, the implementation of return of genomic results and data by researchers remains uneven. This article analyzes the ethical and legal foundations for researcher duties to offer adult participants their interpreted results and raw data as the new normal in genomic research. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 24 is August 2023. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium

Cited by 8 publications

References 33 publications

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

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

Navigating the Genetic Frontier for the Integration of Genetic Services into African Healthcare Systems: A scoping review

Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal

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