Piloting Consumer Health Information Services in Collaboration with a Community Research Engagement Program.
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SUBMITTER: Ansell M
PROVIDER: S-EPMC5889073 | biostudies-literature | 2017 Oct-Dec
REPOSITORIES: biostudies-literature
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Piloting Consumer Health Information Services in Collaboration with a Community Research Engagement Program.
Ansell Margaret M Tennant Michele R MR Piazza Vicki V Cottler Linda B LB
Medical reference services quarterly 20171001 4
At an academic health science center, librarians partnered with a community research engagement program to offer a suite of consumer health information services. The services included training staff in the use of online consumer health resources, purchasing a print collection of monographs, and creating a guide to both the online and print resources for staff use. Focus groups were conducted to assess information needs, and the workshop attendees' online health information competency was assesse ...[more]
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Project description:ObjectiveIn 2018, the Network of the National Libraries of Medicine (NNLM) launched a sponsorship program to support public library staff in completing the Medical Library Association's Consumer Health Information Specialization (CHIS). The objectives of our study were to: (1) determine whether completion of the sponsored specialization improved ability to provide consumer health information; (2) identify new health information services, programming, and outreach activities at public libraries; (3) investigate benefits of the specialization; and (4) determine the impact of sponsorship on obtaining and continuing the specialization.MethodsWe used REDCap to administer a 16-question survey in August 2019 to 224 public library staff who were sponsored during the first year of the program. We measured competence in providing consumer health information aligned with the eight Core Competencies for Providing Consumer Health Information Services [1] as well as new activities at public libraries, benefits of the specialization to public library staff, career gains, and the likelihood of continuing the specialization based on funding.ResultsMore than 80% of 136 participants reported an increase in core consumer health competencies, with a statistically significant improvement in mean competency scores after completing the specialization. Ninety percent of participants have continued their engagement with NNLM, and more than half offered new health information programs and services. While more than half planned to renew the specialization or obtain the Level II specialization, 72% indicated they would not continue without NNLM sponsorship.ConclusionsFindings indicate that NNLM sponsorship of the CHIS specialization was successful in increasing the capacity of public library staff to provide health information to their communities.
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Project description:BackgroundThe importance of community engagement in health is widely recognized, and key themes in UK National Institute for Health and Clinical Excellence (NICE) recommendations for enhancing community engagement are co-production and community control. This study reports an innovative approach to community engagement using the community-organizing methodology, applied in an intervention of social support to increase social capital, reduce stress and improve well-being in mothers who were pregnant and/or with infants aged 0-2 years.MethodsProfessional community organizers in Citizens-UK worked with local member civic institutions in south London to facilitate social support to a group of 15 new mothers. Acceptability of the programme, adherence to principles of co-production and community control, and changes in the outcomes of interest were assessed quantitatively in a quasi-experimental design.ResultsThe programme was found to be feasible and acceptable to participating mothers, and perceived by them to involve co-production and community control. There were no detected changes in subjective well-being, but there were important reductions in distress on a standard self-report measure (GHQ-12). There were increases in social capital of a circumscribed kind associated with the project.ConclusionsCommunity organizing provides a promising model and method of facilitating community engagement in health.
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Project description:Introduction: Community engagement is increasingly recognized as a critical aspect of global health. Recent years have seen an expansion of community engagement activities linked to health research, but debates and inconsistencies remain about the aims of different types of engagement, mechanisms underpinning their implementation and impact, and influential contextual factors. Greater commitment to and consistency around community engagement by health research programs, implementers and funders requires a more coherent evidence base. This realist review is designed to improve our understanding of how and why community engagement contributes to intended and unintended outcomes (including research and ethical outcomes) in different contexts. Given the breadth and diversity of the literature on community engagement in health research, the review will initially focus on malaria research in low- and middle-income countries (LMICs) and draw on wider global health literature where needed. Methods and analysis: Community engagement in practice is often a complex set of interventions. We will conduct a realist review - a theory driven approach to evidence synthesis - to provide explanations for how and why community engagement with health research produces the pattern of outcomes observed across different contexts of application. We will consolidate evidence from a range of documents, including qualitative, quantitative and mixed method studies. The review will follow several stages: devising an initial programme theory, searching evidence, selecting appropriate documents, extracting data, synthesizing and refining the programme theory, and reiteration of these steps as needed. Ethics and dissemination: A formal ethics review is not required for this literature review. Findings will be disseminated in a peer reviewed journal, through national and international conferences, and through a set of short briefings tailored for audiences with an interest in community engagement. Outputs and presentations will be informed by and feed into our network of community engagement experts. PROSPERO registration number: CRD42019125687.
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Project description:IntroductionDespite advances in the co-creation of clinical research involving consumers in the last few decades, consumer engagement in health services research generally remains inconsistent and is too often treated as a perfunctory exercise.ObjectiveDrawing on a health services study on diagnostic test result management, communication and follow-up, we: (1) outline practical strategies used to enhance the contribution of health consumer representatives across all stages of health services research, including active involvement in prioritising objectives for data analysis and participating in data analysis and the dissemination of findings; and (2) describe the impact of continued engagement of consumers on the programme of research, the interpretation of findings and their translational potential.Key innovationsKey enabling innovations for engagement included: (1) planned opportunities for long-term consumer involvement across all stages of the research process from conception to dissemination; (2) enhanced consumer engagement capacity; (3) purposeful recruitment of appropriately trained consumers; (4) provision of support structures for active consumer involvement in research design, analysis and write-up; and (5) financial support for consumer involvement.Impact/conclusionEnhancing consumer contribution and establishing inclusive research design requires a negotiated, interactive, meaningful and transparent process. As a collaborative approach, consumer-driven research involvement offers opportunities for new, often unexpected or unexplored perspectives to feature across the whole research process. In a move away from tokenistic consumer involvement, consumers and researchers who participated in this novel and immersive research project identified inclusive research as a powerful tool to enhance health services research and its translation into effective policy.
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Project description:BackgroundWearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated.ObjectiveThis study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA).MethodsFor the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ?50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis.ResultsA total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day.ConclusionsThis study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period.International registered report identifier (irrid)RR2-10.2196/10238.
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Project description:BackgroundEngagement frameworks provide the conceptual structure for consumer engagement in healthcare decision making, but the level to which these frameworks support culturally and linguistically diverse (CALD) consumer engagement is not known.ObjectiveThis study aimed to investigate how consumer engagement is conceptualised and operationalized and to determine the implications of current consumer engagement frameworks for engagement with CALD consumers.MethodAltheide's document analysis approach was used to guide a systematic search, selection and analytic process. Australian Government health department websites were searched for eligible publicly available engagement frameworks. A narrative synthesis was conducted.ResultsEleven engagement frameworks published between 2007 and 2019 were identified and analysed. Only four frameworks discussed engagement with CALD consumers distinctly. Organisational prerequisites to enhance engagement opportunities and approaches to enable activities of engagement were highlighted to improve CALD consumers' active participation in decision making; however, these largely focused on language, with limited exploration of culturally sensitive services.ConclusionThere is limited discussion of what culturally sensitive services look like and what resources are needed to enhance CALD consumer engagement in high-level decision making. Health services and policy makers can enhance opportunities for engagement with CALD consumers by being flexible in their approach, implementing policies for reimbursement for participation and evaluating and adapting the activities of engagement in collaboration with CALD consumers.Patient/public contributionThis study is part of a wider 'CanEngage' project, which includes a consumer investigator, and is supported by a consumer advisory group. The study was conceived with inputs from the consumer advisory group, which continued to meet regularly with the project team to discuss the methodology and emerging findings.
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Project description:ProblemA goal of the Southern California Clinical and Translational Science Institute (SC-CTSI) at the University of Southern California and Children's Hospital Los Angeles is to train early-stage clinical and translational scientists (CTSs) to conduct research that improves the health of diverse communities. This goal aligns well with the Institute of Medicine's recommendations emphasizing community engagement in biomedical research that facilitates research translation. The Community Mentorship Program (CMP), created to complement community-engaged research didactics, matches CTSs with community mentors who help them identify and complete community-engaged experiences that inform their research.ApproachThe CMP was piloted in 2013-2015 by the SC-CTSI Workforce Development and Community Engagement cores. The CMP team matched three CTSs (assistant professors pursuing mentored career development awards) with mentors at community-based organizations (CBOs) aligned with their research interests. Each mentor-mentee pair signed a memorandum of understanding. The CMP team checked in regularly, monitoring progress and addressing challenges in CTSs' completion of their community-engaged experience.OutcomesEach pair completed at least one community-engaged activity informing the CTS's research. In exit interviews, the CTSs and CBO mentors expressed satisfaction with the program and stated that they would continue to work together. The CTSs reported that the program provided opportunities to develop networks outside academia, build trust within the community, and receive feedback and learn from individuals in communities affected by their research.Next stepsThe CMP will be expanded to include all eligible early-career CTSs and promoted for use in similar settings outside the SC-CTSI.
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Project description:Introduction:Cardiovascular diseases (CVD) are one of key leading causes of mortality worldwide. Both modifiable and non-modifiable risk factors contribute to the development of CVD. Modifiable risk factors such as smoking, unhealthy diets and lack of exercise are increasing in prevalence in Saudi Arabia but may be mitigated using pharmacological and non-pharmacological approaches. Thus, identifying, assessing and managing these modifiable risks at an early stage is essential. Pharmacists are highly accessible primary health professionals and can play a crucial role in screening and managing these risk factors in collaboration with primary care physicians. There is currently no research in Saudi Arabia exploring the views of health consumers with CVD risk factors regarding their preferences for or willingness to engage with community pharmacy CVD preventive health services. Objectives:To explore the perceptions of health consumers about current and feasible future services by pharmacists with a specific focus on CVD risk screening and management in Saudi Arabia. Methods:Semi-structured interviews were conducted with consumers with at least one modifiable CVD risk factor. The interviews were audio-recorded, transcribed verbatim, translated into English and then thematically analysed. Results:A total of 25 individuals, most of whom were Saudi (88%) and women (65%), participated in face to face interviews. Five main themes emerged from the analysis of consumers' responses. 1. Perception of pharmacists' role, the pharmacists' main role was perceived as medication supply. 2. Trust and satisfaction with current service, most participants appeared to have low trust in pharmacists. 3. Preferences for future pharmacy services, most participants were willing to engage in future pharmacy delivered CVD preventive health services, provided there was stringent regulation and oversight of the quality of such services. 4. Viability of new pharmacy services was raised with promotion of such services to the public, collaboration with other health professionals, financial incentivization and motivational rewards thought of as essential ingredient to ensure service feasibility. 5. Health beliefs and help seeking behaviours of consumers were diverse and low health literacy was evident; it was thought that pharmacists can help in these matters by educating and advocating for such consumers. Overall, the data suggested that clinical, communication and professional skills need to be enhanced among Saudi pharmacists to enable them to provide optimal patient cantered services. Conclusion:Health consumers participants were willing to participate and utilise CVD risk screening and management pharmacy-based services, when offered, provided their concerns are addressed. Therefore, in light of the burden of CVD disease in the country, development, implementation and evaluation of pharmacist provided CVD risk screening and management should be undertaken.
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Project description:ObjectiveCommunity engagement practices in Indigenous health research are promoted as a means of decolonising research, but there is no comprehensive synthesis of approaches in the literature. Our aim was to assemble and qualitatively synthesise a comprehensive list of actionable recommendations to enhance community engagement practices with Indigenous peoples in Canada, the USA, Australia and New Zealand.DesignIntegrative review of the literature in medical (Medline, Cumulative Index to Nursing and Allied Health Literature and Embase) and Google and WHO databases (search cut-off date 21 July 2020).Article selectionStudies that contained details regarding Indigenous community engagement frameworks, principles or practices in the field of health were included, with exclusion of non-English publications. Two reviewers independently screened the articles in duplicate and reviewed full-text articles.AnalysisRecommendations for community engagement approaches were extracted and thematically synthesised through content analysis.ResultsA total of 63 studies were included in the review, with 1345 individual recommendations extracted. These were synthesised into a list of 37 recommendations for community engagement approaches in Indigenous health research, categorised by stage of research. In addition, activities applicable to all phases of research were identified: partnership and trust building and active reflection.ConclusionsWe provide a comprehensive list of recommendations for Indigenous community engagement approaches in health research. A limitation of this review is that it may not address all aspects applicable to specific Indigenous community settings and contexts. We encourage anyone who does research with Indigenous communities to reflect on their practices, encouraging changes in research processes that are strengths based.
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