Dataset Information

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.

ABSTRACT:

Background

Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network's research.

Methods

PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network's research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities.

Results

Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants.

Conclusions

PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries.

Impact

Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.

SUBMITTER: Schuster AL

PROVIDER: S-EPMC10068438 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.

Schuster Anne Lr AL Crossnohere Norah L NL Bachini Melinda M Blair Cindy K CK Carpten John D JD Claus Elizabeth B EB Colditz Graham A GA Ding Li L Drake Bettina F BF Fields Ryan C RC Janeway Katherine A KA Kwan Bethany M BM Lenz Heinz-Josef HJ Ma Qin Q Mishra Shiraz I SI Paskett Electra D ED Rebbeck Timothy R TR Ricker Charité C Stern Mariana C MC Sussman Andrew L AL Tiner Jessica C JC Trent Jeffrey M JM Verhaak Roel Gw RG Wagle Nikhil N Willman Cheryl C Bridges John Fp JF

Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology 20230401 4

<h4>Background</h4>Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial in ...[more]

PMID: 36791345

Similar Datasets

Project description:In countries such as Cyprus the financial crisis and the recession have severely affected the funding and priority setting of the health care system. There is evidence highlighting the importance of population' preferences in designing priorities for health care settings. Although public preferences have been thorough analysed in many countries, there is a research gap in terms of simultaneously investigating the relative importance and the weight of differing and competing criteria for determining healthcare priority settings. The main objective of the study was tο investigate public preferences for the relative utility and weight of differing and competing criteria for health care priority setting in Cyprus.The 'conjoint analysis' technique was applied to develop a ranking exercise. The aim of the study was to identify the preferences of the participants for alternative options. Participants were asked to grade in a priority order 16 hypothetical case scenarios of patients with different disease and of diverse socio-economic characteristics awaiting treatment. The sample was purposive and consisted of 100 Cypriots, selected from public locations all over the country.It was revealed that the "severity of the disease" and the "age of the patient" were the key prioritization criteria. Participants assigned the smallest relative value to the criterion "healthy lifestyle". More precisely, participants older than 35 years old assigned higher relative importance to "age", while younger participants to the "severity of the disease". The "healthy lifestyle" criterion was assigned to the lowest relative importance to by all participants.In Cyprus, public participation in health care priority setting is almost inexistent. Nonetheless, it seems that the public's participation in this process could lead to a wider acceptance of the healthcare system especially as a result of the financial crisis and the upcoming reforms implemented such as the establishment of the General System of Health Insurance.

Project description:BackgroundMicrorandomized trials (MRTs) have emerged as the gold standard for the development and evaluation of multicomponent, adaptive mobile health (mHealth) interventions. However, not much is known about the state of participant engagement measurement in MRTs of mHealth interventions.ObjectiveIn this scoping review, we aimed to quantify the proportion of existing or planned MRTs of mHealth interventions to date that have assessed (or have planned to assess) engagement. In addition, for the trials that have explicitly assessed (or have planned to assess) engagement, we aimed to investigate how engagement has been operationalized and to identify the factors that have been studied as determinants of engagement in MRTs of mHealth interventions.MethodsWe conducted a broad search for MRTs of mHealth interventions in 5 databases and manually searched preprint servers and trial registries. Study characteristics of each included evidence source were extracted. We coded and categorized these data to identify how engagement has been operationalized and which determinants, moderators, and covariates have been assessed in existing MRTs.ResultsOur database and manual search yielded 22 eligible evidence sources. Most of these studies (14/22, 64%) were designed to evaluate the effects of intervention components. The median sample size of the included MRTs was 110.5. At least 1 explicit measure of engagement was included in 91% (20/22) of the included MRTs. We found that objective measures such as system usage data (16/20, 80%) and sensor data (7/20, 35%) are the most common methods of measuring engagement. All studies included at least 1 measure of the physical facet of engagement, but the affective and cognitive facets of engagement have largely been neglected (only measured by 1 study each). Most studies measured engagement with the mHealth intervention (Little e) and not with the health behavior of interest (Big E). Only 6 (30%) of the 20 studies that measured engagement assessed the determinants of engagement in MRTs of mHealth interventions; notification-related variables were the most common determinants of engagement assessed (4/6, 67% studies). Of the 6 studies, 3 (50%) examined the moderators of participant engagement-2 studies investigated time-related moderators exclusively, and 1 study planned to investigate a comprehensive set of physiological and psychosocial moderators in addition to time-related moderators.ConclusionsAlthough the measurement of participant engagement in MRTs of mHealth interventions is prevalent, there is a need for future trials to diversify the measurement of engagement. There is also a need for researchers to address the lack of attention to how engagement is determined and moderated. We hope that by mapping the state of engagement measurement in existing MRTs of mHealth interventions, this review will encourage researchers to pay more attention to these issues when planning for engagement measurement in future trials.

Project description:BackgroundIncreasing numbers of healthy individuals are undergoing predispositional personal genome sequencing. Here we describe the design and early outcomes of the PeopleSeq Consortium, a multi-cohort collaboration of predispositional genome sequencing projects, which is examining the medical, behavioral, and economic outcomes of returning genomic sequencing information to healthy individuals.MethodsApparently healthy adults who participated in four of the sequencing projects in the Consortium were included. Web-based surveys were administered before and after genomic results disclosure, or in some cases only after results disclosure. Surveys inquired about sociodemographic characteristics, motivations and concerns, behavioral and medical responses to sequencing results, and perceived utility.ResultsAmong 1395 eligible individuals, 658 enrolled in the Consortium when contacted and 543 have completed a survey after receiving their genomic results thus far (mean age 53.0 years, 61.4% male, 91.7% white, 95.5% college graduates). Most participants (98.1%) were motivated to undergo sequencing because of curiosity about their genetic make-up. The most commonly reported concerns prior to pursuing sequencing included how well the results would predict future risk (59.2%) and the complexity of genetic variant interpretation (56.8%), while 47.8% of participants were concerned about the privacy of their genetic information. Half of participants reported discussing their genomic results with a healthcare provider during a median of 8.0 months after receiving the results; 13.5% reported making an additional appointment with a healthcare provider specifically because of their results. Few participants (< 10%) reported making changes to their diet, exercise habits, or insurance coverage because of their results. Many participants (39.5%) reported learning something new to improve their health that they did not know before. Reporting regret or harm from the decision to undergo sequencing was rare (< 3.0%).ConclusionsHealthy individuals who underwent predispositional sequencing expressed some concern around privacy prior to pursuing sequencing, but were enthusiastic about their experience and not distressed by their results. While reporting value in their health-related results, few participants reported making medical or lifestyle changes.

Project description:BackgroundMobile health (mHealth) apps are revolutionizing the way clinicians and researchers monitor and manage the health of their participants. However, many studies using mHealth apps are hampered by substantial participant dropout or attrition, which may impact the representativeness of the sample and the effectiveness of the study. Therefore, it is imperative for researchers to understand what makes participants stay with mHealth apps or studies using mHealth apps.ObjectiveThis study aimed to review the current peer-reviewed research literature to identify the notable factors and strategies used in adult participant engagement and retention.MethodsWe conducted a systematic search of PubMed, MEDLINE, and PsycINFO databases for mHealth studies that evaluated and assessed issues or strategies to improve the engagement and retention of adults from 2015 to 2020. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Notable themes were identified and narratively compared among different studies. A binomial regression model was generated to examine the factors affecting retention.ResultsOf the 389 identified studies, 62 (15.9%) were included in this review. Overall, most studies were partially successful in maintaining participant engagement. Factors related to particular elements of the app (eg, feedback, appropriate reminders, and in-app support from peers or coaches) and research strategies (eg, compensation and niche samples) that promote retention were identified. Factors that obstructed retention were also identified (eg, lack of support features, technical difficulties, and usefulness of the app). The regression model results showed that a participant is more likely to drop out than to be retained.ConclusionsRetaining participants is an omnipresent challenge in mHealth studies. The insights from this review can help inform future studies about the factors and strategies to improve participant retention.

Dataset Information

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.

Background

Methods

Results

Conclusions

Impact

Publications

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets