scholarly journals The Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: A Scoping Review (Preprint)

Author(s):  
Geetanjali Rajamani ◽  
Patricia Rodriguez Espinosa ◽  
Lisa G. Rosas
2021 ◽  
Author(s):  
Geetanjali Rajamani ◽  
Patricia Rodriguez Espinosa ◽  
Lisa G. Rosas

BACKGROUND The exponential growth of health information technology (HIT) has potential to facilitate community engagement in research. However, little is known about the use of HIT in community engaged research (CEnR), including the types of HIT used, the populations engaged, and the research outcomes. OBJECTIVE The objectives of this scoping review were to examine studies that used HIT for community engagement and to assess: 1) the types of populations included in studies, 2) community engagement strategies utilized, 3) types of HIT tools, and 4) outcomes of interest measured. METHODS We searched PubMed and PCORI Literature Explorer using terms relating to HIT, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 articles for screening. After inclusion and exclusion criteria were applied, a total of 37 articles were analyzed for key themes and for approaches relevant to HIT and community engagement research. RESULTS This analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial/ethnic minority communities, such as Black/African American, American Indian/Alaska Native, Latinx, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers for designing apps for health snacking to older adults for soliciting input around supportive neighborhoods. The studies were also geographically spread across the US and globally. Community engagement strategies utilized included collaborative development of HIT tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of HIT to engage communities in research, e.g., through citizen science. The types of technology used varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing HIT tools and prototypes with participants, measuring knowledge, and advocating for community change. CONCLUSIONS This study illustrates the current landscape at the intersection of HIT tools and CEnR approaches. It highlights studies wherein various CEnR approaches were used to design culturally centered HIT tools, promote HIT uptake, or were used for engagement in health research and advocacy. Our findings can serve as a platform for generating future research by expanding scope of HIT tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of co-creating culturally centered HIT tools and better knowledge to promote action and improve health outcomes.


BMJ Open ◽  
2018 ◽  
Vol 8 (12) ◽  
pp. e022931 ◽  
Author(s):  
Joanna Taylor ◽  
Claudia Pagliari

IntroductionThe rising popularity of social media, since their inception around 20 years ago, has been echoed in the growth of health-related research using data derived from them. This has created a demand for literature reviews to synthesise this emerging evidence base and inform future activities. Existing reviews tend to be narrow in scope, with limited consideration of the different types of data, analytical methods and ethical issues involved. There has also been a tendency for research to be siloed within different academic communities (eg, computer science, public health), hindering knowledge translation. To address these limitations, we will undertake a comprehensive scoping review, to systematically capture the broad corpus of published, health-related research based on social media data. Here, we present the review protocol and the pilot analyses used to inform it.MethodsA version of Arksey and O’Malley’s five-stage scoping review framework will be followed: (1) identifying the research question; (2) identifying the relevant literature; (3) selecting the studies; (4) charting the data and (5) collating, summarising and reporting the results. To inform the search strategy, we developed an inclusive list of keyword combinations related to social media, health and relevant methodologies. The frequency and variability of terms were charted over time and cross referenced with significant events, such as the advent of Twitter. Five leading health, informatics, business and cross-disciplinary databases will be searched: PubMed, Scopus, Association of Computer Machinery, Institute of Electrical and Electronics Engineers and Applied Social Sciences Index and Abstracts, alongside the Google search engine. There will be no restriction by date.Ethics and disseminationThe review focuses on published research in the public domain therefore no ethics approval is required. The completed review will be submitted for publication to a peer-reviewed, interdisciplinary open access journal, and conferences on public health and digital research.


Author(s):  
Esmee M Bordewijk ◽  
Wentao Li ◽  
Rik van Eekelen ◽  
Rui Wang ◽  
Marian Showell ◽  
...  

PLoS Medicine ◽  
2021 ◽  
Vol 18 (7) ◽  
pp. e1003705
Author(s):  
Bernard Kakuhikire ◽  
Emily N. Satinsky ◽  
Charles Baguma ◽  
Justin D. Rasmussen ◽  
Jessica M. Perkins ◽  
...  

Background Community engagement is central to the conduct of health-related research studies as a way to determine priorities, inform study design and implementation, increase recruitment and retention, build relationships, and ensure that research meets the goals of the community. Community sensitization meetings, a form of community engagement, are often held prior to the initiation of research studies to provide information about upcoming study activities and resolve concerns in consultation with potential participants. This study estimated demographic, health, economic, and social network correlates of attendance at community sensitization meetings held in advance of a whole-population, combined behavioral, and biomedical research study in rural Uganda. Methods and findings Research assistants collected survey data from 1,630 adults participating in an ongoing sociocentric social network cohort study conducted in a rural region of southwestern Uganda. These community survey data, collected between 2016 and 2018, were linked to attendance logs from community sensitization meetings held in 2018 and 2019 before the subsequent community survey and community health fair. Of all participants, 264 (16%) attended a community sensitization meeting before the community survey, 464 (28%) attended a meeting before the community health fair, 558 (34%) attended a meeting before either study activity (survey or health fair), and 170 (10%) attended a meeting before both study activities (survey and health fair). Using multivariable Poisson regression models, we estimated correlates of attendance at community sensitization meetings. Attendance was more likely among study participants who were women (adjusted relative risk [ARR]health fair = 1.71, 95% confidence interval [CI], 1.32 to 2.21, p < 0.001), older age (ARRsurvey = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001; ARRhealth fair = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001), married (ARRsurvey = 1.74, 95% CI, 1.29 to 2.35, p < 0.001; ARRhealth fair = 1.41, 95% CI, 1.13 to 1.76, p = 0.002), and members of more community groups (ARRsurvey = 1.26 per group, 95% CI, 1.10 to 1.44, p = 0.001; ARRhealth fair = 1.26 per group, 95% CI, 1.12 to 1.43, p < 0.001). Attendance was less likely among study participants who lived farther from meeting locations (ARRsurvey = 0.54 per kilometer, 95% CI, 0.30 to 0.97, p = 0.041; ARRhealth fair = 0.57 per kilometer, 95% CI, 0.38 to 0.86, p = 0.007). Leveraging the cohort’s sociocentric design, social network analyses suggested that information conveyed during community sensitization meetings could reach a broader group of potential study participants through attendees’ social network and household connections. Study limitations include lack of detailed data on reasons for attendance/nonattendance at community sensitization meetings; achieving a representative sample of community members was not an explicit aim of the study; and generalizability may not extend beyond this study setting. Conclusions In this longitudinal, sociocentric social network study conducted in rural Uganda, we observed that older age, female sex, being married, membership in more community groups, and geographical proximity to meeting locations were correlated with attendance at community sensitization meetings held in advance of bio-behavioral research activities. Information conveyed during meetings could have reached a broader portion of the population through attendees’ social network and household connections. To ensure broader input and potentially increase participation in health-related research studies, the dissemination of research-related information through community sensitization meetings may need to target members of underrepresented groups.


BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e046546
Author(s):  
Val Thurtle ◽  
Andy JM Leather ◽  
Haja Wurie ◽  
Edward Foday ◽  
Mohamed Samai ◽  
...  

IntroductionHealth research in low-income and middle-income countries, which face the greatest burden of disease, is a vital component of efforts to combat global health inequality. With increased research, there has also been concern about ethical and regulatory issues and the state of research ethics committees, with various attempts to strengthen them. This scoping review examines the literature on ethics committees for health-related research in sub-Saharan Africa, with a focus on regulatory governance and leadership, administrative and financial capacity, and conduct of ethical reviews.Methods and analysisWe will use the methodological approach proposed by Arksey and O’Malley and adapted by Levac et al and the Joanna Briggs Institute. Inclusion and exclusion criteria are based on the ‘Population–Concept–Context’ framework. Literature (from January 2000 to December 2020) will be searched in multiple databases including Embase and PubMed and websites of relevant organisations. All records will be screened by applying the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review flowchart: two reviewers will independently screen titles and abstracts, and full text of included records. Using an inductive approach, we will synthesise the literature, identify best practice and gaps in evidence on strengthening research ethics committees.Ethics and disseminationEthical approval is not required as the review will include only published literature. The findings will be published in a peer-reviewed journal and presented at stakeholder meetings and conferences.


PLoS ONE ◽  
2021 ◽  
Vol 16 (6) ◽  
pp. e0252774
Author(s):  
Alison Rouncefield-Swales ◽  
Jane Harris ◽  
Bernie Carter ◽  
Lucy Bray ◽  
Toni Bewley ◽  
...  

Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Methods Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. Main findings A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited. Conclusions Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.


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