Dataset Information

Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

ABSTRACT: BACKGROUND/AIMS:Recent genomic medicine initiatives underscore the importance of including diverse participants in research. Considerable literature has identified barriers to and facilitators of increasing diversity, yet disparities in recruiting and retaining adequate numbers of participants from diverse groups continue to limit the generalizability of clinical genomic research. METHODS:The North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing study employed evidence-based strategies to enhance the participation of under-represented minority patients. In this study, we evaluate the impact of our efforts by systematically analyzing the "cascade" of attrition of participants throughout study interactions. RESULTS:Although successful in recruiting a cohort that included ~30% non-Caucasian patients overall, the study still enrolled and retained a lower proportion of minorities compared to the pool of eligible patients who were nominated. We evaluated sociodemographic characteristics and related variables as potential factors associated with attrition throughout these phases of the study. CONCLUSIONS:These results suggest that varied approaches will be needed to increase participation in genomic medicine research. Our findings highlight factors to consider when developing strategies to address this critical need. Failing to include a broad range of populations in research studies will exacerbate existing disparities in the translation of genomic sequencing to medical care.

SUBMITTER: Moore EG

PROVIDER: S-EPMC6112240 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

Moore Elizabeth G EG Roche Myra M Rini Christine C Corty Edward W EW Girnary Zahra Z O'Daniel Julianne M JM Lin Feng-Chang FC Corbie-Smith Giselle G Evans James P JP Henderson Gail E GE Berg Jonathan S JS

Public health genomics 20170101 6

<h4>Background/aims</h4>Recent genomic medicine initiatives underscore the importance of including diverse participants in research. Considerable literature has identified barriers to and facilitators of increasing diversity, yet disparities in recruiting and retaining adequate numbers of participants from diverse groups continue to limit the generalizability of clinical genomic research.<h4>Methods</h4>The North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing study employed ev ...[more]

PMID: 30086550

Similar Datasets

Project description:BackgroundThe integration of mental health and social services for people diagnosed with severe mental illness (SMI) has been a key aspect of attempts to reform mental health services in the UK and aims to minimise user and carer distress and confusion arising from service discontinuities. Community mental health teams (CMHTs) are a key component of UK policy for integrated service delivery, but implementing this policy has raised considerable organisational challenges. The aim of this study was to identify and explore facilitators and barriers perceived to influence continuity of care by health and social care professionals working in and closely associated with CMHTs.MethodsThis study employed a survey design utilising in-depth, semi-structured interviews with a proportionate, random sample of 113 health and social care professionals and representatives of voluntary organisations. Participants worked in two NHS Mental Health Trusts in greater London within eight adult CMHTs and their associated acute in-patient wards, six local general practices, and two voluntary organisations.ResultsTeam leadership, decision making, and experiences of teamwork support were facilitators for cross boundary and team continuity; face-to-face communication between teams, managers, general practitioners, and the voluntary sector were facilitators for information continuity. Relational, personal, and longitudinal continuity were facilitated in some local areas by workforce stability. Barriers for cross boundary and team continuity were specific leadership styles and models of decision making, blurred professional role boundaries, generic working, and lack of training for role development. Barriers for relational, personal, and longitudinal continuity were created by inadequate staffing levels, high caseloads, and administrative duties that could limit time spent with users. Incompatibility of information technology systems hindered information continuity. Flexible continuity was challenged by the increasingly complex needs of service users.ConclusionsSubstantive challenges exist in harnessing the benefits of integrated CMHT working to deliver continuity of care. Team support should be prioritised in terms of IT provision linked to a review of current models of administrative support. Investment in education and training for role development, leadership, workforce retention, and skills to meet service users' complex needs are recommended.

Project description:(1) Background: Personalised medicine (PM) is an innovative way to produce better patient outcomes by using an individualised or stratified approach to disease and treatment rather than a collective approach to treating patients. PM is a major challenge for all European healthcare systems. This article aims to identify the needs of citizens in terms of PM adaptation, as well as to provide insights into the barriers and facilitators categorised in relation to key stakeholders of their implementation. (2) Methods: This article presents data obtained from the survey "Barriers and facilitators of Personalised Medicine implementation-qualitative study under Regions4PerMed (H2020) project". Semi-structured questions were included in the above-mentioned survey. The questions included both structured and unstructured segments in an online questionnaire (Google Forms). Data were compiled into a data base. The results of the research were presented in the study. The number of people who participated in the survey can be considered an insufficient sample size for statistical measurement. In order to avoid collecting unreliable data, the questionnaires were sent to various stakeholders of the Regions4PerMed project, which includes members of the Advisory Board of the Regions4PerMed Project, but also speakers of conferences and workshops, and participants in these events. The professional profiles of the respondents are also diverse. (3) Results: The insights on what would help in the adaptation of Personal Medicine to citizen needs have been categorised into 7 areas of need: education; finances; dissemination; data protection/IT/data sharing; system changes/governmental level; cooperation/collaboration; public/citizens. Barriers and facilitators have been categorised into ten key stakeholders of the implementation barriers: government and government agencies; medical doctors/practitioners; healthcare system; healthcare providers; patients and patient organisations; medical sector, scientific community, researchers, stakeholders; industry; technology developers; financial institutions; media. (4) Conclusions: Barriers to the implementation of Personalised Medicine are observed across Europe. The barriers and facilitators mentioned in the article need to be effectively managed in healthcare systems across Europe. There is an urgent need to remove as many barriers as possible and create as many facilitators as possible to implement personalized medicine in the European system.

Dataset Information

Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

Publications

Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets