Margaret Demment

Developing the Evidence Base to Inform Best Practice: A Scoping Study of Breast and Cervical Cancer Reviews in Low- and Middle-Income Countries

Background Breast and cervical cancers have emerged as major global health challenges and disproportionately lead to excess morbidity and mortality in low- and middle-income countries (LMICs) when compared to high-income countries. The objective of this paper was to highlight key findings, recommendations, and gaps in research and practice identified through a scoping study of recent reviews in breast and cervical cancer in LMICs. Methods We conducted a scoping study based on the six-stage framework of Arskey and O’Malley. We searched PubMed, Cochrane Reviews, and CINAHL with the following inclusion criteria: 1) published between 2005-February 2015, 2) focused on breast or cervical cancer 3) focused on LMIC, 4) review article, and 5) published in English. Results Through our systematic search, 63 out of the 94 identified cervical cancer reviews met our selection criteria and 36 of the 54 in breast cancer. Cervical cancer reviews were more likely to focus upon prevention and screening, while breast cancer reviews were more likely to focus upon treatment and survivorship. Few of the breast cancer reviews referenced research and data from LMICs themselves; cervical cancer reviews were more likely to do so. Most reviews did not include elements of the PRISMA checklist. Conclusion Overall, a limited evidence base supports breast and cervical cancer control in LMICs. Further breast and cervical cancer prevention and control studies are necessary in LMICs.

Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: implications for precision medicine

Background “Precision medicine” (PM) requires researchers to identify actionable genetic risks and for clinicians to interpret genetic testing results to patients. Whether PM will equally benefit all populations or exacerbate existing disparities is uncertain. Methods We ascertained attitudes toward genetic testing and genetic research by race in the United States using the online Amazon mTurk US workforce (n = 403 White; n = 56 African American (AA)). Generalized linear models were used to test differences in beliefs and preferences by race, adjusting for sociodemographics and prior genetic experience. Results AA were less likely than White to believe that genetic tests should be promoted or made available. Further, AA were less likely to want genetic testing results or to participate in genetic research. Conclusions Important dimensions that underlay PM are not universally accepted by all populations. Without clear attention to concerns, AA communities may not equally benefit from the rapidly-emerging trend in PM-centered research and clinical practice.

A globally networked hybrid approach to public health capacity training for maternal health professionals in low and middle income countries

BackgroundMundoComm is a current NIH-funded project for sustainable public health capacity building in community engagement and technological advances aimed at improving maternal health issues. Two to four teams are selected annually, each consisting of three healthcare professionals and one technical person from specific low and middle income countries (LMICs) including Costa Rica, Dominican Republic, Honduras, and other LMICs. MundoComm is a course with three parts: in-person workshops, online modules, and mentored community engagement development. Two annual 1-week on-site “short courses” convened in Costa Rica are supplemented with six monthly online training modules using the Moodle® online platform for e-learning, and mentored project development. The year-long course comprises over 20 topics divided into the six modules - each module further segmented into 4 week-long assignments, with readings and assigned tasks covering different aspects of community-engaged interventions. The content is peer reviewed by experts in the respective fields from University of Rochester, UCIMED in Costa Rica, and faculty from Costa Rica and the Dominican Republic who maintain regular contact with the trainees to mentor learning and project progress. The purpose of this paper is to report the first year results of the MundoComm project.MethodsBoth quantitative and qualitative feedback (using online data capturing forms) assess baseline and post-training knowledge and skills in public health project strategies.ResultsThe course currently has one team each in Costa Rica, the Dominican Republic, and Honduras for a total of 12 trainees. The course and modules include best practices in information and communication technologies (ICTs), ethical reviews, community engagement, evidence-based community interventions, and e-Health strategies. To maximize successful and culturally appropriate training approaches, the multi-media didactic presentations, flexible distance learning strategies, and the use of tablets for offline data collection are offered to trainees, and then feedback from trainees and other lessons learned aid in the refinement of subsequent curricular improvements.ConclusionsThrough remark and discussion, the authors report on 1) the feasibility of using a globally networked learning environment (GNLE) plus workshop approach to public health capacity training and 2) the capacity of LMIC teams to complete the MundoComm trainings and produce ICT-based interventions to address a maternal health issue in their respective regions.

Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India.

Background: Genomic research has innumerable benefits. However, if people are unwilling to participate in genomic research, application of knowledge will be limited. This study examined the likelihood of respondents from a high- and a low- to middle-income country to participate in genetic research. Methods: Cross-sectional data were collected using Amazons Mechanical Turk workforce to ascertain attitudes toward participation in genetic research. Registered country of residence was either the US (n = 505) or India (n = 505). Multiple logistic regression models were used to assess adjusted effects of demographic characteristics, health, social status, beliefs and concerns on 4 genetic research outcomes. Results: Participants from India who believed chance and powerful others influenced their health were more likely to participate in genetic research (OR = 1.0, 95% CI 1.0-1.1) and to agree with sharing of DNA data (OR = 1.1, 95% CI 1.1-1.2). US participants were more likely to be concerned about protection of family history, which they indicated would affect participation (OR = 3.6, 95% CI 2.1-6.0). Commonalities for the likelihood of participation were beliefs that genetic research could help find new treatments (India OR = 2.3, 95% CI 1.0-5.4; US OR = 4.7, 95% CI 2.0-11.2) and descendants would benefit (India OR = 2.6, 95% CI 1.2-5.5; US OR = 3.0, 95% CI 1.3-7.1). Conclusions: Concurrence of beliefs on benefits and concerns about genetic research suggest they may be common across countries. Consideration of commonalities may be important to increase global participation in genetic research.

Knowledge, Interest, and Requirements for Participation in a Birth Repository: A Qualitative Study [6E]

INTRODUCTION: Biorepositories are infrequently developed with community preferences prioritized. This project aims to do this through engaging pregnant women and their broader communities in providing information about their knowledge of, interest in, and requirements for participation in a new placental/birth biorepository being developed. METHODS: Rapid Qualitative Inquiry was implemented through focus groups to better understand attitudes toward development of a birth biorepository. The team debriefed after each focus group to iteratively build upon learnings and to triangulate with subsequent groups. Four focus groups were conducted: two low-income (n=16); one higher income (n=6); and one community (n=9) in partnership with a large community agency and with a large teaching hospital. RESULTS: Few participants had previous knowledge of biorepositories. Participants expressed considerable interest in the potential benefits of a biorepository, though tempered by many concerns that often differed by income. For example, higher-income women were primarily concerned with the ethical implications of research, while lower-income women were concerned with how researchers approached and interacted with them. Women were open to donation of specimens for a biorepository but few supported broad consent. Most women wanted to be informed about current/future research projects and about findings that used their material. CONCLUSION: To effectively recruit a diverse population of peripartum women to participate in a biorepository, efforts are needed to inform and engage potential participants early in the process. New methods respectful of community priorities concerning recruitment, consent, and follow-up are needed to satisfy concerns about participation and to strengthen trust between researchers and communities.