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Selecting, refining and identifying priority Cochrane Reviews in health communication and participation in partnership with consumers and other stakeholders.

ABSTRACT:

Background

Priority-setting partnerships between researchers and stakeholders (meaning consumers, health professionals and health decision-makers) may improve research relevance and value. The Cochrane Consumers and Communication Group (CCCG) publishes systematic reviews in 'health communication and participation', which includes concepts such as shared decision-making, patient-centred care and health literacy. We aimed to select and refine priority topics for systematic reviews in health communication and participation, and use these to identify five priority CCCG Cochrane Reviews.

Methods

Twenty-eight participants (14 consumers, 14 health professionals/decision-makers) attended a 1-day workshop in Australia. Using large-group activities and voting, participants discussed, revised and then selected 12 priority topics from a list of 21 previously identified topics. In mixed small groups, participants refined these topics, exploring underlying problems, who they affect and potential solutions. Thematic analysis identified cross-cutting themes, in addition to key populations and potential interventions for future Cochrane Reviews. We mapped these against CCCG's existing review portfolio to identify five priority reviews.

Results

Priority topics included poor understanding and implementation of patient-centred care by health services, the fact that health information can be a low priority for health professionals, communication and coordination breakdowns in health services, and inadequate consumer involvement in health service design. The four themes underpinning the topics were culture and organisational structures, health professional attitudes and assumptions, inconsistent experiences of care, and lack of shared understanding in the sector. Key populations for future reviews were described in terms of social health characteristics (e.g. people from indigenous or culturally and linguistically diverse backgrounds, elderly people, and people experiencing socioeconomic disadvantage) more than individual health characteristics. Potential interventions included health professional education, interventions to change health service/health professional culture and attitudes, and health service policies and standards. The resulting five priority Cochrane Reviews identified were improving end-of-life care communication, patient/family involvement in patient safety, improving future doctors' communication skills, consumer engagement strategies, and promoting patient-centred care.

Conclusions

Stakeholders identified priority topics for systematic reviews associated with structural and cultural challenges underlying health communication and participation, and were concerned that issues of equity be addressed. Priority-setting with stakeholders presents opportunities and challenges for review producers.

SUBMITTER: Synnot AJ

PROVIDER: S-EPMC6489310 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Publications

Selecting, refining and identifying priority Cochrane Reviews in health communication and participation in partnership with consumers and other stakeholders.

Synnot Anneliese J AJ Tong Allison A Bragge Peter P Lowe Dianne D Nunn Jack S JS O'Sullivan Molly M Horvat Lidia L Kay Debra D Ghersi Davina D McDonald Steve S Poole Naomi N Bourke Noni N Lannin Natasha A NA Vadasz Danny D Oliver Sandy S Carey Karen K Hill Sophie J SJ

Health research policy and systems 20190429 1

<h4>Background</h4>Priority-setting partnerships between researchers and stakeholders (meaning consumers, health professionals and health decision-makers) may improve research relevance and value. The Cochrane Consumers and Communication Group (CCCG) publishes systematic reviews in 'health communication and participation', which includes concepts such as shared decision-making, patient-centred care and health literacy. We aimed to select and refine priority topics for systematic reviews in healt ...[more]

PMID: 31036016

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Project description:BackgroundHealth researchers and funders are increasingly consulting with stakeholders to set their research agendas but these activities are rarely evaluated. The Cochrane Consumers and Communication Group (CCCG) conducted a priority-setting project for systematic reviews in partnership with stakeholders (consumers/patients, health professionals, policy-makers and others). In this paper, we aim to describe our evaluation of the project's processes and outcomes.MethodsWe used a 10-element conceptual framework designed to evaluate processes (e.g. stakeholder engagement, use of explicit process) and outcomes (e.g. improved decision-making quality, stakeholder acceptance and understanding) of health priority-setting. Data sources included empirical data (feedback surveys, project documents and CCCG editorial policies) and CCCG staff reflections. Data were analysed using content analysis.ResultsThe project met three and partially met two of the process elements, for example, by engaging key stakeholders throughout the project and using pre-determined and transparent methods that offered multiple and meaningful ways to contribute. The project met three and partially met two of the outcome elements. Stakeholders were satisfied with and accepted the process and an additional six Cochrane Review titles aligned with stakeholder priorities are now being conducted in partnership with stakeholders. The project has also directly influenced the editorial work of CCCG, for example, by shifting its organisational focus towards coproduction, and indirectly influenced the work of Cochrane's prioritisation and coproduction activities. Some areas were identified as having room for improvement, for example, there was low participation by people from diverse backgrounds, stakeholders could contribute to most but not all project stages, and there was no formal way for stakeholders to appeal decisions at project end. In the 3 years since its completion, the Cochrane Reviews are nearing completion but none of the reviews have been published.ConclusionWe demonstrated that our priority-setting methods were broadly in line with best practice and the project resulted in many positive outcomes beyond just identifying the top priorities for research. Our evaluation framework and recommendations for future evaluations may be of use to priority-setting researchers planning similar activities.

Project description:OBJECTIVE:To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). SETTING:International. PARTICIPANTS:We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). DESIGN:Survey. METHODS:We invited people to submit their research ideas via an online survey open for 4?weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. RESULTS:Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. CONCLUSIONS:Consumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals' communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

Project description:BACKGROUND: Eczema is the most common inflammatory skin disease of childhood, characterized by an itchy red rash that usually involves the face and skin folds. There is currently no curative treatment for eczema, so the reduction of eczema incidence through disease prevention is a desirable goal. Potential interventions for preventing eczema include exclusive breastfeeding, hydrolysed protein formulas and soy formulas when bottle feeding, maternal antigen avoidance, omega oil supplementation, prebiotics and probiotics. OBJECTIVES: This overview of reviews aims to present the current body of data from Cochrane and non-Cochrane reviews to provide the most up-to-date evidence on the efficacy and safety of interventions to prevent eczema in infants and children at different risk levels for developing allergic disease. METHODS: Our pool of Cochrane and non-Cochrane reviews came from the 2010 United Kingdom National Health Service (NHS) Evidence Skin Disorders Annual Evidence Updates Mapping Exercise on Atopic Eczema. This group used a comprehensive search strategy last conducted in August 2010 to identify all systematic reviews on eczema prevention. We identified all reviews that met our pre-specified inclusion criteria, and data were extracted, analysed, compiled into tables and synthesized using quantitative and qualitative methods. MAIN RESULTS: Seven systematic reviews containing 39 relevant trials with 11 897 participants were included in this overview. Overall, there was no clear evidence that any of the main interventions reviewed reduced eczema incidence. In subgroup analyses of infants at high risk of allergic disease, an observational study found that exclusive breastfeeding for at least six months compared with introduction of solids at three to six months decreased the incidence of eczema by 60% (risk ratio (RR): 0.40; 95% confidence interval (CI): 0.21, 0.78), and a randomized controlled trial found that prebiotics compared with no prebiotics decreased incidence by 58% (RR: 0.42; 95% CI: 0.21, 0.84). However, each of these findings was based on the results of a single small trial, and no intervention reduced eczema incidence beyond the first two years of life. Although we pre-specified incidence of atopic eczema (i.e. eczema associated with immunoglobulin E (IgE) sensitization) as a primary outcome, data on whether participants diagnosed with eczema were truly atopic were largely lacking from systematic reviews. Similarly, data on atopy, measured using skin prick tests or specific IgE tests to allergens, were not reported in many reviews. No interventions were found to decrease atopy when reported. Adverse events data were generally lacking, but data from a trial of probiotics versus no probiotics showed significantly more spitting up in the first one (RR: 1.88; 95% CI: 1.03, 3.45) and two (RR: 1.69; 95% CI: 1.02, 2.80) months of life, but no overall increase in risk of gastrointestinal symptoms in the first year. AUTHORS#ENTITYSTARTX02019; CONCLUSIONS: Although there is currently no clear evidence showing that any of the interventions examined in this overview prevent eczema in participants not selected for risk of allergic disease, there is some evidence that exclusive breastfeeding for at least six months and prebiotics might reduce eczema incidence in high-risk participants. However, these conclusions are based on limited evidence with methodological shortcomings. Future research on prevention of eczema is needed and should examine different types of hydrolysed formulas, prebiotics and probiotics, as well as enhancement of the skin barrier and other novel approaches in infants at different risk levels for developing allergic disease.

Dataset Information

Selecting, refining and identifying priority Cochrane Reviews in health communication and participation in partnership with consumers and other stakeholders.

Background

Methods

Results

Conclusions

Publications

Selecting, refining and identifying priority Cochrane Reviews in health communication and participation in partnership with consumers and other stakeholders.

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