Community views on active case finding for tuberculosis in low- and middle-income countries: a qualitative evidence synthesis.

BACKGROUND: Active case finding (ACF) refers to the systematic identification of people with tuberculosis in communities and amongst populations who do not present to health facilities, through approaches such as door-to-door screening or contact tracing. ACF may improve access to tuberculosis diagnosis and treatment for the poor and for people remote from diagnostic and treatment facilities. As a result, ACF may also reduce onward transmission. However, there is a need to understand how these programmes are experienced by communities in order to design appropriate services. OBJECTIVES: To synthesize community views on tuberculosis active case finding (ACF) programmes in low- and middle-income countries. SEARCH METHODS: We searched MEDLINE, Embase, and eight other databases up to 22 June 2023, together with reference checking, citation searching, and contact with study authors to identify additional studies. We did not include grey literature. SELECTION CRITERIA: This review synthesized qualitative research and mixed-methods studies with separate qualitative data. Eligible studies explored community experiences, perceptions, or attitudes towards ACF programmes for tuberculosis in any endemic low- or middle-income country, with no time restrictions. DATA COLLECTION AND ANALYSIS: Due to the large volume of studies identified, we chose to sample studies that had 'thick' description and that investigated key subgroups of children and refugees. We followed standard Cochrane methods for study description and appraisal of methodological limitations. We conducted thematic synthesis and developed codes inductively using ATLAS.ti software. We examined codes for underlying ideas, connections, and interpretations and, from this, generated analytical themes. We assessed the confidence in the findings using the GRADE-CERQual approach, and produced a conceptual model to display how the different findings interact. MAIN RESULTS: We included 45 studies in this synthesis, and sampled 20. The studies covered a broad range of World Health Organization (WHO) regions (Africa, South-East Asia, Eastern Mediterranean, and the Americas) and explored the views and experiences of community members, community health workers, and clinical staff in low- and middle-income countries endemic for tuberculosis. The following five themes emerged. • ACF improves access to diagnosis for many, but does little to help communities on the edge. Tuberculosis ACF and contact tracing improve access to health services for people with worse health and fewer resources (High confidence). ACF helps to find this population, exposed to deprived living conditions, but is not sensitive to additional dimensions of their plight (High confidence) and out-of-pocket costs necessary to continue care (High confidence). Finally, migration and difficult geography further reduce communities' access to ACF (High confidence). • People are afraid of diagnosis and its impact. Some community members find screening frightening. It exposes them to discrimination along distinct pathways (isolation from their families and wider community, lost employment and housing). HIV stigma compounds tuberculosis stigma and heightens vulnerability to discrimination along these same pathways (High confidence). Consequently, community members may refuse to participate in screening, contact tracing, and treatment (High confidence). In addition, people with tuberculosis reported their emotional turmoil upon diagnosis, as they anticipated intense treatment regimens and the prospect of living with a serious illness (High confidence). • Screening is undermined by weak health infrastructure. In many settings, a lack of resources results in weak services in competition with other disease control programmes (Moderate confidence). In this context of low investment, people face repeated tests and clinic visits, wasted time, and fraught social interaction with health providers (Moderate confidence). ACF can create expectations for follow-up health care that it cannot deliver (High confidence). Finally, community education improves awareness of tuberculosis in some settings, but lack of full information impacts community members, parents, and health workers, and sometimes leads to harm for children (High confidence). • Health workers are an undervalued but important part of ACF. ACF can feel difficult for health workers in the context of a poorly resourced health system and with people who may not wish to be identified. In addition, the evidence suggests health workers are poorly protected against tuberculosis and fear they or their families might become infected (Moderate confidence). However, they appear to be central to programme success, as the humanity they offer often acts as a driving force for retaining people with tuberculosis in care (Moderate confidence). • Local leadership is necessary but not sufficient for ensuring appropriate programmes. Local leadership creates an intrinsic motivation for communities to value health services (High confidence). However, local leadership cannot guarantee the success of ACF and contact tracing programmes. It is important to balance professional authority with local knowledge and rapport (High confidence). AUTHORS' CONCLUSIONS: Tuberculosis active case finding (ACF) and contact tracing bring a diagnostic service to people who may otherwise not receive it, such as those who are well or without symptoms and those who are sick but who have fewer resources and live further from health facilities. However, capturing these 'missing cases' may in itself be insufficient without appropriate health system strengthening to retain people in care. People who receive a tuberculosis diagnosis must contend with a complex and unsustainable cascade of care, and this affects their perception of ACF and their decision to engage with it.

Use of qualitative research in World Health Organisation guidelines: a document analysis.

BACKGROUND: Guidelines depend on effect estimates, usually derived from randomised controlled trials, to inform their decisions. Qualitative research evidence may improve decisions made but where in the process and the methods to do this have not been so clearly established. We sought to describe and appraise how qualitative research has been used to inform World Heath Organization guidance since 2020. METHODS: We conducted a document analysis of WHO guidelines from 2020 to 2022. We purposely sampled guidelines on the topics of maternal and newborn health (MANH) and infectious diseases, as most of the qualitative synthesis to date has been conducted on these topics, likely representing the 'best case' scenario. We searched the in-built repository feature of the WHO website and used standardised search terms to identify qualitative reporting. Using deductive frameworks, we described how qualitative evidence was used to inform guidelines and appraised the standards of this use. RESULTS: Of the 29 guidelines, over half used qualitative research to help guide decisions (18/29). A total of 8 of these used qualitative research to inform the guideline scope, all 18 to inform recommendations, and 1 to inform implementation considerations. All guidelines drew on qualitative evidence syntheses (QES), and five further supplemented this with primary qualitative research. Qualitative findings reported in guidelines were typically descriptive, identifying people's perception of the benefits and harms of interventions or logistical barriers and facilitators to programme success. No guideline provided transparent reporting of how qualitative research was interpreted and weighed used alongside other evidence when informing decisions, and only one guideline reported the inclusion of qualitative methods experts on the panel. Only a few guidelines contextualised their recommendations by indicating which populations and settings qualitative findings could be applied. CONCLUSIONS: Qualitative research frequently informed WHO guideline decisions particularly in the field of MANH. However, the process often lacked transparency. We identified unmet potential in informing implementation considerations and contextualisation of the recommendations. Use in these areas needs further methods development.

Academic contributions to the development of evidence and policy systems: an EPPI Centre collective autoethnography.

BACKGROUND: Evidence for policy systems emerging around the world combine the fields of research synthesis, evidence-informed policy and public engagement with research. We conducted this retrospective collective autoethnography to understand the role of academics in developing such systems. METHODS: We constructed a timeline of EPPI Centre work and associated events since 1990. We employed: Transition Theory to reveal emerging and influential innovations; and Transformative Social Innovation theory to track their increasing depth, reach and embeddedness in research and policy organisations. FINDINGS: The EPPI Centre, alongside other small research units, collaborated with national and international organisations at the research-policy interface to incubate, spread and embed new ways of working with evidence and policy. Sustainable change arising from research-policy interactions was less about uptake and embedding of innovations, but more about co-developing and tailoring innovations with organisations to suit their missions and structures for creating new knowledge or using knowledge for decisions. Both spreading and embedding innovation relied on mutual learning that both accommodated and challenged established assumptions and values of collaborating organisations as they adapted to closer ways of working. The incubation, spread and embedding of innovations have been iterative, with new ways of working inspiring further innovation as they spread and embedded. Institutionalising evidence for policy required change in both institutions generating evidence and institutions developing policy. CONCLUSIONS: Key mechanisms for academic contributions to advancing evidence for policy were: contract research focusing attention at the research-policy interface; a willingness to work in unfamiliar fields; inclusive ways of working to move from conflict to consensus; and incentives and opportunities for reflection and consolidating learning.

Interventions to support contraceptive choice and use: a global systematic map of systematic reviews.

BACKGROUND: To review the highest level of available evidence, a systematic map identified systematic reviews that evaluated the effectiveness of interventions to improve contraception choice and increase contraception use. METHODS: Systematic reviews published since 2000 were identified from searches of nine databases. Data were extracted using a coding tool developed for this systematic map. Methodological quality of included reviews was assessed using AMSTAR 2 criteria. FINDINGS AND CONCLUSION: Fifty systematic reviews reported evaluations of interventions for contraception choice and use addressing three domains (individual, couples, community); Meta-analyses in 11 of the reviews mostly addressed interventions for individuals. We identified 26 reviews covering High Income Countries, 12 reviews covering Low Middle-Income Countries and the rest a mix of both. Most reviews (15) focussed on psychosocial interventions, followed by incentives (6) and m-health interventions (6). The strongest evidence from meta-analyses is for the effectiveness of motivational interviewing, contraceptive counselling, psychosocial interventions, school-based education, and interventions promoting contraceptive access, demand-generation interventions (community and facility based, financial mechanisms and mass media), and mobile phone message interventions. Even in resource constrained settings, community-based interventions can increase contraceptive use. There are gaps in the evidence on interventions for contraception choice and use, and limitations in study designs and lack of representativeness. Most approaches focus on individual women rather than couples or wider socio-cultural influences on contraception and fertility. This review identifies interventions which work to increase contraception choice and use, and these could be implemented in school, healthcare or community settings.

Community views on mass drug administration for filariasis: a qualitative evidence synthesis.

BACKGROUND: The World Health Organization (WHO) recommends mass drug administration (MDA), giving a drug at regular intervals to a whole population, as part of the strategy for several disease control programmes in low- and middle-income countries. MDA is currently WHO policy for areas endemic with lymphatic filariasis, which is a parasitic disease that can result in swollen limbs and disability. The success depends on communities adhering to the drugs given, and this will be influenced by the perception of the drug, the programme, and those delivering it.  OBJECTIVES: To synthesize qualitative research evidence about community experience with, and understanding and perception of, MDA programmes for lymphatic filariasis. To explore whether programme design and delivery influence the community experience identified in the analysis. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, and seven other databases up to 8 April 2021, together with reference checking, citation searching, and contact with study authors to identify additional studies. SELECTION CRITERIA: This review synthesized qualitative research and mixed-methods studies when it was possible to extract qualitative data. Eligible studies explored community experiences, perceptions, or attitudes towards MDA programmes for lymphatic filariasis in any country, conducted between 2000 and 2019.  DATA COLLECTION AND ANALYSIS: We extracted data on study design including: authors, aims, participants, methods, and qualitative data collection methods. We also described programme delivery factors including: country, urban or rural setting, endemicity, drug regimen, rounds of MDA received at the time of the study, who delivered the drugs, how the drugs were delivered, use of health education, and sensitization and adherence monitoring. We conducted a thematic analysis and developed codes inductively using ATLAS.ti software. We examined codes for underlying ideas, connections, and interpretations and, from this, generated analytical themes. We assessed the confidence in the findings using the GRADE-CERQual approach, and produced a conceptual model to display our findings.  MAIN RESULTS: From 902 results identified in the search, 29 studies met our inclusion criteria. The studies covered a broad range of countries in Africa, South-East Asia, and South America, and explored the views and experiences of community members and community drug distributors in low-income countries endemic for lymphatic filariasis. Four themes emerged. People weigh up benefits and harms before participating. People understand the potential benefits in terms of relief of suffering, stigma, and avoiding costs (high confidence); however, these theoretical benefits do not always mesh with their experiences (high confidence). In particular, adverse effects are frightening and unwelcome (high confidence); and these effects are amplified through rumour and social media (moderate confidence). Many people are suspicious of MDA programmes. When people lack a scientific explanation for the programme and their experiences of it, they often develop social explanations instead. These are largely shaped on the historical backdrop and level of trust people have in relevant authority figures (high confidence), although some have unwavering faith in their government and, by extension, the programme (moderate confidence). Programmes expect compliance, and this can become coercive and blaming. Health workers and community members stigmatize non-compliance, which can become coercive (moderate confidence), so communities may appear to comply publicly, but privately reject treatment (moderate confidence). Community distributors are often not respected or valued. They have little authority (moderate confidence), and the behaviour of some distributors damages the MDA programme's reputation (high confidence). Communities want information about programmes to help make decisions about participation, but drug distributors are not sufficiently informed, or skilled in this communication (high confidence). We intended to assess whether programme designs influenced communities' perceptions of the programme and decision to adhere but were unable to do so as few studies adequately reported the design and implementation of the local programme. We have moderate to high confidence in the evidence contributing to the review themes and subthemes. AUTHORS' CONCLUSIONS: Adherence with MDA for filariasis is influenced by individual direct experience of benefit and harm; social influences in the community; political influences and their relationship to government; and historical influences. Fear of adverse effects was frequently described and this appears to be particularly important for communities. When views were negative, we were surprised by the strength of feeling expressed. Enthusiasm for these schemes as a strategy in global policy needs debate in the light of these findings.

Rapid molecular tests for tuberculosis and tuberculosis drug resistance: a qualitative evidence synthesis of recipient and provider views.

BACKGROUND: Programmes that introduce rapid molecular tests for tuberculosis and tuberculosis drug resistance aim to bring tests closer to the community, and thereby cut delay in diagnosis, ensure early treatment, and improve health outcomes, as well as overcome problems with poor laboratory infrastructure and inadequately trained personnel. Yet, diagnostic technologies only have an impact if they are put to use in a correct and timely manner. Views of the intended beneficiaries are important in uptake of diagnostics, and their effective use also depends on those implementing testing programmes, including providers, laboratory professionals, and staff in health ministries. Otherwise, there is a risk these technologies will not fit their intended use and setting, cannot be made to work and scale up, and are not used by, or not accessible to, those in need. OBJECTIVES: To synthesize end-user and professional user perspectives and experiences with low-complexity nucleic acid amplification tests (NAATs) for detection of tuberculosis and tuberculosis drug resistance; and to identify implications for effective implementation and health equity. SEARCH METHODS: We searched MEDLINE, Embase, CINAHL, PsycInfo and Science Citation Index Expanded databases for eligible studies from 1 January 2007 up to 20 October 2021. We limited all searches to 2007 onward because the development of Xpert MTB/RIF, the first rapid molecular test in this review, was completed in 2009. SELECTION CRITERIA: We included studies that used qualitative methods for data collection and analysis, and were focused on perspectives and experiences of users and potential users of low-complexity NAATs to diagnose tuberculosis and drug-resistant tuberculosis. NAATs included Xpert MTB/RIF, Xpert MTB/RIF Ultra, Xpert MTB/XDR, and the Truenat assays. Users were people with presumptive or confirmed tuberculosis and drug-resistant tuberculosis (including multidrug-resistant (MDR-TB)) and their caregivers, healthcare providers, laboratory technicians and managers, and programme officers and staff; and were from any type of health facility and setting globally. MDR-TB is tuberculosis caused by resistance to at least rifampicin and isoniazid, the two most effective first-line drugs used to treat tuberculosis. DATA COLLECTION AND ANALYSIS: We used a thematic analysis approach for data extraction and synthesis, and assessed confidence in the findings using GRADE CERQual approach. We developed a conceptual framework to illustrate how the findings relate. MAIN RESULTS: We found 32 studies. All studies were conducted in low- and middle-income countries. Twenty-seven studies were conducted in high-tuberculosis burden countries and 21 studies in high-MDR-TB burden countries. Only one study was from an Eastern European country. While the studies covered a diverse use of low-complexity NAATs, in only a minority of studies was it used as the initial diagnostic test for all people with presumptive tuberculosis. We identified 18 review findings and grouped them into three overarching categories. Critical aspects users value People with tuberculosis valued reaching diagnostic closure with an accurate diagnosis, avoiding diagnostic delays, and keeping diagnostic-associated cost low. Similarly, healthcare providers valued aspects of accuracy and the resulting confidence in low-complexity NAAT results, rapid turnaround times, and keeping cost to people seeking a diagnosis low. In addition, providers valued diversity of sample types (for example, gastric aspirate specimens and stool in children) and drug resistance information. Laboratory professionals appreciated the improved ease of use, ergonomics, and biosafety of low-complexity NAATs compared to sputum microscopy, and increased staff satisfaction. Challenges reported to realizing those values People with tuberculosis and healthcare workers were reluctant to test for tuberculosis (including MDR-TB) due to fears, stigma, or cost concerns. Thus, low-complexity NAAT testing is not implemented with sufficient support or discretion to overcome barriers that are common to other approaches to testing for tuberculosis. Delays were reported at many steps of the diagnostic pathway owing to poor sample quality; difficulties with transporting specimens; lack of sufficient resources; maintenance of low-complexity NAATs; increased workload; inefficient work and patient flows; over-reliance on low-complexity NAAT results in lieu of clinical judgement; and lack of data-driven and inclusive implementation processes. These challenges were reported to lead to underutilization.  Concerns for access and equity The reported concerns included sustainable funding and maintenance and equitable use of resources to access low-complexity NAATs, as well as conflicts of interest between donors and people implementing the tests. Also, lengthy diagnostic delays, underutilization of low-complexity NAATs, lack of tuberculosis diagnostic facilities in the community, and too many eligibility restrictions hampered access to prompt and accurate testing and treatment. This was particularly the case for vulnerable groups, such as children, people with MDR-TB, or people with limited ability to pay. We had high confidence in most of our findings. AUTHORS' CONCLUSIONS: Low-complexity diagnostics have been presented as a solution to overcome deficiencies in laboratory infrastructure and lack of skilled professionals. This review indicates this is misleading. The lack of infrastructure and human resources undermine the added value new diagnostics of low complexity have for recipients and providers. We had high confidence in the evidence contributing to these review findings. Implementation of new diagnostic technologies, like those considered in this review, will need to tackle the challenges identified in this review including weak infrastructure and systems, and insufficient data on ground level realities prior and during implementation, as well as problems of conflicts of interest in order to ensure equitable use of resources.

Repairing boundaries along pathways to tuberculosis case detection: a qualitative synthesis of intervention designs.

BACKGROUND: Tuberculosis case-finding interventions often involve several activities to enhance patient pathways, and it is unclear which activity defines the type of case-finding intervention. When conducting studies to identify the most effective case-finding intervention it is important to have a clear understanding of these interventions for meaningful comparisons. This review aimed to construct a systems-based logic model of all pathways to tuberculosis case detection through a synthesis of intervention designs. METHODS: We identified an existing systematic review on the effectiveness of interventions to increase tuberculosis case detection and updated the search from December 2016 to October 2020. We included randomized controlled trials, as these designs encourage detailed description of interventions. Taking each study in turn, intervention descriptions were read in detail. The texts were analysed qualitatively by constantly comparing emerging codes to construct patient journeys, visualized as logical chains. Actions taken as part of interventions were positioned along patient journeys to theorize the sequence of outcomes. Patient journeys formed the basis of the model, which was refined through discussion. RESULTS: Based on intervention descriptions from 17 randomized controlled trials, our model distinguishes two care-seeking pathways and four screening pathways. An open invitation to people with tuberculosis symptoms creates care-seeking pathways. On care-seeking pathways, systematic screening can be conducted at general health services, but not at specific TB care services. People invited to tuberculosis services regardless of symptoms follow tuberculosis screening pathways and may be identified with presumptive tuberculosis even if they do not seek care for tuberculosis symptoms. Tuberculosis screening pathways include screening offered to all people accessing care at general health services, screening at a mobile clinic or health facility with open invitation to a whole population or tuberculosis contacts, screening personally offered to a whole population or tuberculosis contacts at home, work or school, and screening offered to people receiving care for human immunodeficiency virus or other clinical risk-group care. CONCLUSION: This systems-based logic model of tuberculosis case-finding pathways may support standardized terminology, consistency, transparency and improved communication among researchers, policy-makers, health workers and community members when implementing and evaluating interventions to improve tuberculosis case detection.

Domains and processes for institutionalizing evidence-informed health policy-making: a critical interpretive synthesis.

BACKGROUND: While calls for institutionalization of evidence-informed policy-making (EIP) have become stronger in recent years, there is a paucity of methods that governments and organizational knowledge brokers can use to sustain and integrate EIP as part of mainstream health policy-making. The objective of this paper was to conduct a knowledge synthesis of the published and grey literatures to develop a theoretical framework with the key features of EIP institutionalization. METHODS: We applied a critical interpretive synthesis (CIS) that allowed for a systematic, yet iterative and dynamic analysis of heterogeneous bodies of literature to develop an explanatory framework for EIP institutionalization. We used a "compass" question to create a detailed search strategy and conducted electronic searches to identify papers based on their potential relevance to EIP institutionalization. Papers were screened and extracted independently and in duplicate. A constant comparative method was applied to develop a framework on EIP institutionalization. The CIS was triangulated with the findings of stakeholder dialogues that involved civil servants, policy-makers and researchers. RESULTS: We identified 3001 references, of which 88 papers met our eligibility criteria. This CIS resulted in a definition of EIP institutionalization as the "process and outcome of (re-)creating, maintaining and reinforcing norms, regulations, and standard practices that, based on collective meaning and values, actions as well as endowment of resources, allow evidence to become-over time-a legitimate and taken-for-granted part of health policy-making". The resulting theoretical framework comprised six key domains of EIP institutionalization that capture both structure and agency: (1) governance; (2) standards and routinized processes; (3) partnership, collective action and support; (4) leadership and commitment; (5) resources; and (6) culture. Furthermore, EIP institutionalization is being achieved through five overlapping stages: (i) precipitating events; (ii) de-institutionalization; (iii) semi-institutionalization (comprising theorization and diffusion); (iv) (re)-institutionalization; and (v) renewed de-institutionalization processes. CONCLUSIONS: This CIS advances the theoretical and conceptual discussions on EIP institutionalization, and provides new insights into an evidence-informed framework for initiating, strengthening and/or assessing efforts to institutionalize EIP.

Framework synthesis to inform the ideation and design of a paper-based health information system (PHISICC).

BACKGROUND: Health information systems (HIS) are meant to support decision-making at all levels of the system, including frontline health workers. In field studies in Côte d'Ivoire, Mozambique and Nigeria, we observed health workers' interactions with the HIS and identified twelve decision-making components of HIS. The objective of this framework synthesis is to portray these components in HIS research, in order to inform the ideation of a paper-based HIS intervention (PHISICC). METHODS: We searched studies in the Cochrane Central Register of Controlled Trials (CENTRAL), Embase, Epistemonikos, Medline, in-Process on the Ovid platform, OpenGrey, PDQ  Evidence ("pretty darnd quick" Evidence), the World Health Organization (WHO) Global Health Library and included studies focussing on HIS interventions, data quality, information support tools and data use for decision-making in the context of the governmental health care sector. We assessed the methodological quality of studies using the Critical Appraisal Skills Programme tool. We synthesised the findings based on the decision-making components of HIS and thematic areas. RESULTS: The search identified 6784 studies; 50 were included. Most of the 50 studies had quality concerns. All studies included at least one of the decision-making components: the most prominent were the technical aspects of 'recording' and 'reporting'. Data use for decision-making was much less represented. CONCLUSION: HIS research focuses on the more technical aspects of HIS. Further research on HIS, given the strong push towards HIS digitalisation, should consider putting at the centre the human experience of decision-making and data use, in order to make HIS relevant for quality of care.

Factors influencing contraception choice and use globally: a synthesis of systematic reviews.

BACKGROUND: Unintended pregnancy has a huge adverse impact on maternal, child and family health and wealth. There is an unmet need for contraception globally, with an estimated 40% of pregnancies unintended worldwide. METHODS: We systematically searched PubMed and specialist databases for systematic reviews addressing contraceptive choice, uptake or use, published in English between 2000 and 2019. Two reviewers independently selected and appraised reports and synthesised quantitative and qualitative review findings. We mapped emergent themes to a social determinants of health framework to develop our understanding of the complexities of contraceptive choice and use. FINDINGS: We found 24 systematic reviews of mostly moderate or high quality. Factors affecting contraception use are remarkably similar among women in very different cultures and settings globally. Use of contraception is influenced by the perceived likelihood and appeal of pregnancy, and relationship status. It is influenced by women's knowledge, beliefs, and perceptions of side effects and health risks. Male partners have a strong influence, as do peers' views and experiences, and families' expectations. Lack of education and poverty is linked with low contraception use, and social and cultural norms influence contraception and expectations of family size and timing. Contraception use also depends upon their availability, the accessibility, confidentiality and costs of health services, and attitudes, behaviour and skills of health practitioners. INTERPRETATION: Contraception has remarkably far-reaching benefits and is highly cost-effective. However, women worldwide lack sufficient knowledge, capability and opportunity to make reproductive choices, and health care systems often fail to provide access and informed choice.

Reporting guideline for priority setting of health research (REPRISE).

BACKGROUND: Research priority setting with stakeholders can help direct the limited resources for health research toward priority areas of need. Ensuring transparency of the priority setting process can strengthen legitimacy and credibility for influencing the research agenda. This study aims to develop a reporting guideline for priority setting of health research. METHODS: We searched electronic databases and relevant websites for sources (frameworks, guidelines, or models for conducting, appraising, reporting or evaluating health research priority setting, and reviews (including systematic reviews)), and primary studies of research priority setting to July 2019. We inductively developed a list of reporting items and piloted the preliminary guideline with a diverse range of 30 priority setting studies from the records retrieved. RESULTS: From 21,556 records, we included 26 sources for the candidate REPRISE framework and 455 primary research studies. The REporting guideline for PRIority SEtting of health research (REPRISE) has 31 reporting items that cover 10 domains: context and scope, governance and team, framework for priority setting, stakeholders/participants, identification and collection of priorities, prioritization of research topics, output, evaluation and feedback, translation and implementation, and funding and conflict of interest. Each reporting item includes a descriptor and examples. CONCLUSIONS: The REPRISE guideline can facilitate comprehensive reporting of studies of research priority setting. Improved transparency in research priority setting may strengthen the acceptability and implementation of the research priorities identified, so that efforts and funding are invested in generating evidence that is of importance to all stakeholders. TRIAL REGISTRATION: Not applicable.

Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals.

BACKGROUND: We report a process to identify and prioritise research questions in preterm birth that are most important to people affected by preterm birth and healthcare practitioners in the United Kingdom and Republic of Ireland. METHODS: Using consensus development methods established by the James Lind Alliance, unanswered research questions were identified using an online survey, a paper survey distributed in NHS preterm birth clinics and neonatal units, and through searching published systematic reviews and guidelines. Prioritisation of these questions was by online voting, with paper copies at the same NHS clinics and units, followed by a decision-making workshop of people affected by preterm birth and healthcare professionals. RESULTS: Overall 26 organisations participated. Three hundred and eighty six people responded to the survey, and 636 systematic reviews and 12 clinical guidelines were inspected for research recommendations. From this, a list of 122 uncertainties about the effects of treatment was collated: 70 from the survey, 28 from systematic reviews, and 24 from guidelines. After removing 18 duplicates, the 104 remaining questions went to a public online vote on the top 10. Five hundred and seven people voted; 231 (45%) people affected by preterm birth, 216 (43%) health professionals, and 55 (11%) affected by preterm birth who were also a health professional. Although the top priority was the same for all types of voter, there was variation in how other questions were ranked. Following review by the Steering Group, the top 30 questions were then taken to the prioritisation workshop. A list of top 15 questions was agreed, but with some clear differences in priorities between people affected by preterm birth and healthcare professionals. CONCLUSIONS: These research questions prioritised by a partnership process between service users and healthcare professionals should inform the decisions of those who plan to fund research. Priorities of people affected by preterm birth were sometimes different from those of healthcare professionals, and future priority setting partnerships should consider reporting these separately, as well as in total.

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

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.

Exercise interventions and patient beliefs for people with hip, knee or hip and knee osteoarthritis: a mixed methods review.

BACKGROUND: Chronic peripheral joint pain due to osteoarthritis (OA) is extremely prevalent and a major cause of physical dysfunction and psychosocial distress. Exercise is recommended to reduce joint pain and improve physical function, but the effect of exercise on psychosocial function (health beliefs, depression, anxiety and quality of life) in this population is unknown. OBJECTIVES: To improve our understanding of the complex inter-relationship between pain, psychosocial effects, physical function and exercise. SEARCH METHODS: Review authors searched 23 clinical, public health, psychology and social care databases and 25 other relevant resources including trials registers up to March 2016. We checked reference lists of included studies for relevant studies. We contacted key experts about unpublished studies. SELECTION CRITERIA: To be included in the quantitative synthesis, studies had to be randomised controlled trials of land- or water-based exercise programmes compared with a control group consisting of no treatment or non-exercise intervention (such as medication, patient education) that measured either pain or function and at least one psychosocial outcome (self-efficacy, depression, anxiety, quality of life). Participants had to be aged 45 years or older, with a clinical diagnosis of OA (as defined by the study) or self-reported chronic hip or knee (or both) pain (defined as more than six months' duration).To be included in the qualitative synthesis, studies had to have reported people's opinions and experiences of exercise-based programmes (e.g. their views, understanding, experiences and beliefs about the utility of exercise in the management of chronic pain/OA). DATA COLLECTION AND ANALYSIS: We used standard methodology recommended by Cochrane for the quantitative analysis. For the qualitative analysis, we extracted verbatim quotes from study participants and synthesised studies of patients' views using framework synthesis. We then conducted an integrative review, synthesising the quantitative and qualitative data together. MAIN RESULTS: Twenty-one trials (2372 participants) met the inclusion criteria for quantitative synthesis. There were large variations in the exercise programme's content, mode of delivery, frequency and duration, participant's symptoms, duration of symptoms, outcomes measured, methodological quality and reporting. Comparator groups were varied and included normal care; education; and attention controls such as home visits, sham gel and wait list controls. Risk of bias was high in one and unclear risk in five studies regarding the randomisation process, high for 11 studies regarding allocation concealment, high for all 21 studies regarding blinding, and high for three studies and unclear for five studies regarding attrition. Studies did not provide information on adverse effects.There was moderate quality evidence that exercise reduced pain by an absolute percent reduction of 6% (95% confidence interval (CI) -9% to -4%, (9 studies, 1058 participants), equivalent to reducing (improving) pain by 1.25 points from 6.5 to 5.3 on a 0 to 20 scale and moderate quality evidence that exercise improved physical function by an absolute percent of 5.6% (95% CI -7.6% to 2.0%; standardised mean difference (SMD) -0.27, 95% CI -0.37 to -0.17, equivalent to reducing (improving) WOMAC (Western Ontario and McMaster Universities Osteoarthritis Index) function on a 0 to 100 scale from 49.9 to 44.3) (13 studies, 1599 participants)). Self-efficacy was increased by an absolute percent of 1.66% (95% CI 1.08% to 2.20%), although evidence was low quality (SMD 0.46, 95% CI 0.34 to 0.58, equivalent to improving the ExBeliefs score on a 17 to 85 scale from 64.3 to 65.4), with small benefits for depression from moderate quality evidence indicating an absolute percent reduction of 2.4% (95% CI -0.47% to 0.5%) (SMD -0.16, 95% CI -0.29 to -0.02, equivalent to improving depression measured using HADS (Hospital Anxiety and Depression Scale) on a 0 to 21 scale from 3.5 to 3.0) but no clinically or statistically significant effect on anxiety (SMD -0.11, 95% CI -0.26 to 0.05, 2% absolute improvement, 95% CI -5% to 1% equivalent to improving HADS anxiety on a 0 to 21 scale from 5.8 to 5.4; moderate quality evidence). Five studies measured the effect of exercise on health-related quality of life using the 36-item Short Form (SF-36) with statistically significant benefits for social function, increasing it by an absolute percent of 7.9% (95% CI 4.1% to 11.6%), equivalent to increasing SF-36 social function on a 0 to 100 scale from 73.6 to 81.5, although the evidence was low quality. Evidence was downgraded due to heterogeneity of measures, limitations with blinding and lack of detail regarding interventions. For 20/21 studies, there was a high risk of bias with blinding as participants self-reported and were not blinded to their participation in an exercise intervention.Twelve studies (with 6 to 29 participants) met inclusion criteria for qualitative synthesis. Their methodological rigour and quality was generally good. From the patients' perspectives, ways to improve the delivery of exercise interventions included: provide better information and advice about the safety and value of exercise; provide exercise tailored to individual's preferences, abilities and needs; challenge inappropriate health beliefs and provide better support.An integrative review, which compared the findings from quantitative trials with low risk of bias and the implications derived from the high-quality studies in the qualitative synthesis, confirmed the importance of these implications. AUTHORS' CONCLUSIONS: Chronic hip and knee pain affects all domains of people's lives. People's beliefs about chronic pain shape their attitudes and behaviours about how to manage their pain. People are confused about the cause of their pain, and bewildered by its variability and randomness. Without adequate information and advice from healthcare professionals, people do not know what they should and should not do, and, as a consequence, avoid activity for fear of causing harm. Participation in exercise programmes may slightly improve physical function, depression and pain. It may slightly improve self-efficacy and social function, although there is probably little or no difference in anxiety. Providing reassurance and clear advice about the value of exercise in controlling symptoms, and opportunities to participate in exercise programmes that people regard as enjoyable and relevant, may encourage greater exercise participation, which brings a range of health benefits to a large population of people.

Narratives of community engagement: a systematic review-derived conceptual framework for public health interventions.

BACKGROUND: Government policy increasingly supports engaging communities to promote health. It is critical to consider whether such strategies are effective, for whom, and under what circumstances. However, 'community engagement' is defined in diverse ways and employed for different reasons. Considering the theory and context we developed a conceptual framework which informs understanding about what makes an effective (or ineffective) community engagement intervention. METHODS: We conducted a systematic review of community engagement in public health interventions using: stakeholder involvement; searching, screening, appraisal and coding of research literature; and iterative thematic syntheses and meta-analysis. A conceptual framework of community engagement was refined, following interactions between the framework and each review stage. RESULTS: From 335 included reports, three products emerged: (1) two strong theoretical 'meta-narratives': one, concerning the theory and practice of empowerment/engagement as an independent objective; and a more utilitarian perspective optimally configuring health services to achieve defined outcomes. These informed (2) models that were operationalized in subsequent meta-analysis. Both refined (3) the final conceptual framework. This identified multiple dimensions by which community engagement interventions may differ. Diverse combinations of intervention purpose, theory and implementation were noted, including: ways of defining communities and health needs; initial motivations for community engagement; types of participation; conditions and actions necessary for engagement; and potential issues influencing impact. Some dimensions consistently co-occurred, leading to three overarching models of effective engagement which either: utilised peer-led delivery; employed varying degrees of collaboration between communities and health services; or built on empowerment philosophies. CONCLUSIONS: Our conceptual framework and models are useful tools for considering appropriate and effective approaches to community engagement. These should be tested and adapted to facilitate intervention design and evaluation. Using this framework may disentangle the relative effectiveness of different models of community engagement, promoting effective, sustainable and appropriate initiatives.

How to increase value and reduce waste when research priorities are set.

The increase in annual global investment in biomedical research--reaching US$240 billion in 2010--has resulted in important health dividends for patients and the public. However, much research does not lead to worthwhile achievements, partly because some studies are done to improve understanding of basic mechanisms that might not have relevance for human health. Additionally, good research ideas often do not yield the anticipated results. As long as the way in which these ideas are prioritised for research is transparent and warranted, these disappointments should not be deemed wasteful; they are simply an inevitable feature of the way science works. However, some sources of waste cannot be justified. In this report, we discuss how avoidable waste can be considered when research priorities are set. We have four recommendations. First, ways to improve the yield from basic research should be investigated. Second, the transparency of processes by which funders prioritise important uncertainties should be increased, making clear how they take account of the needs of potential users of research. Third, investment in additional research should always be preceded by systematic assessment of existing evidence. Fourth, sources of information about research that is in progress should be strengthened and developed and used by researchers. Research funders have primary responsibility for reductions in waste resulting from decisions about what research to do.

The effectiveness of community engagement in public health interventions for disadvantaged groups: a meta-analysis.

BACKGROUND: Inequalities in health are acknowledged in many developed countries, whereby disadvantaged groups systematically suffer from worse health outcomes such as lower life expectancy than non-disadvantaged groups. Engaging members of disadvantaged communities in public health initiatives has been suggested as a way to reduce health inequities. This systematic review was conducted to evaluate the effectiveness of public health interventions that engage the community on a range of health outcomes across diverse health issues. METHODS: We searched the following sources for systematic reviews of public health interventions: Cochrane CDSR and CENTRAL, Campbell Library, DARE, NIHR HTA programme website, HTA database, and DoPHER. Through the identified reviews, we collated a database of primary studies that appeared to be relevant, and screened the full-text documents of those primary studies against our inclusion criteria. In parallel, we searched the NHS EED and TRoPHI databases for additional primary studies. For the purposes of these analyses, study design was limited to randomised and non-randomised controlled trials. Only interventions conducted in OECD countries and published since 1990 were included. We conducted a random effects meta-analysis of health behaviour, health consequences, self-efficacy, and social support outcomes, and a narrative summary of community outcomes. We tested a range of moderator variables, with a particular emphasis on the model of community engagement used as a potential moderator of intervention effectiveness. RESULTS: Of the 9,467 primary studies scanned, we identified 131 for inclusion in the meta-analysis. The overall effect size for health behaviour outcomes is d = .33 (95% CI .26, .40). The interventions were also effective in increasing health consequences (d = .16, 95% CI .06, .27); health behaviour self-efficacy (d = .41, 95% CI .16, .65) and perceived social support (d = .41, 95% CI .23, .65). Although the type of community engagement was not a significant moderator of effect, we identified some trends across studies. CONCLUSIONS: There is solid evidence that community engagement interventions have a positive impact on a range of health outcomes across various conditions. There is insufficient evidence to determine whether one particular model of community engagement is more effective than any other.

Capacity for conducting systematic reviews in low- and middle-income countries: a rapid appraisal.

BACKGROUND: Systematic reviews of research are increasingly recognised as important for informing decisions across policy sectors and for setting priorities for research. Although reviews draw on international research, the host institutions and countries can focus attention on their own priorities. The uneven capacity for conducting research around the world raises questions about the capacity for conducting systematic reviews. METHODS: A rapid appraisal was conducted of current capacity and capacity strengthening activities for conducting systematic reviews in low- and middle-income countries (LMICs). A systems approach to analysis considered the capacity of individuals nested within the larger units of research teams, institutions that fund, support, and/or conduct systematic reviews, and systems that support systematic reviewing internationally. RESULTS: International systematic review networks, and their support organisations, are dominated by members from high-income countries. The largest network comprising a skilled workforce and established centres is the Cochrane Collaboration. Other networks, although smaller, provide support for systematic reviews addressing questions beyond effective clinical practice which require a broader range of methods. Capacity constraints were apparent at the levels of individuals, review teams, organisations, and system wide. Constraints at each level limited the capacity at levels nested within them. Skills training for individuals had limited utility if not allied to opportunities for review teams to practice the skills. Skills development was further constrained by language barriers, lack of support from academic organisations, and the limitations of wider systems for communication and knowledge management. All networks hosted some activities for strengthening the capacities of individuals and teams, although these were usually independent of core academic programmes and traditional career progression. Even rarer were efforts to increase demand for systematic reviews and to strengthen links between producers and potential users of systematic reviews. CONCLUSIONS: Limited capacity for conducting systematic reviews within LMICs presents a major technical and social challenge to advancing their health systems. Effective capacity in LMICs can be spread through investing effort at multiple levels simultaneously, supported by countries (predominantly high-income countries) with established skills and experience.

Methods used to conceptualize dimensions of health equity impacts of public health interventions in systematic reviews.

OBJECTIVES: Our aims were to, first, identify and summarize the use of methods, frameworks, and tools as a conceptual basis for investigating dimensions of equity impacts of public health interventions in systematic reviews including an equity focus. These include PROGRESS-Plus, which identifies key sociodemographic characteristics that determine health outcomes. Second, we aimed to document challenges and opportunities encountered in the application of such methods, as reported in systematic reviews. STUDY DESIGN AND SETTING: We conducted a methodological study, comprising an overview of systematic reviews with a focus on, or that aimed to assess, the equity impacts of public health interventions. We used electronic searches of the Cochrane Database of Systematic Reviews, the Database of Promoting Health Effectiveness Reviews (DoPHER), and the Finding Accessible Inequalities Research in Public Health Database, supplemented with automated searches of the OpenAlex dataset. An active learning algorithm was used to prioritize title-abstract records for manual screening against eligibility criteria. We extracted and analyzed a core dataset from a purposively selected sample of reviews, to summarize key characteristics and approaches to conceptualizing investigations of equity. RESULTS: We assessed 322 full-text reports for eligibility, from which we included 120 reports of systematic reviews. PROGRESS-Plus was the only formalized framework used to conceptualize dimensions of equity impacts. Most reviews were able to apply their intended methods to at least some degree. Where intended methods were unable to be applied fully, this was usually because primary research studies did not report the necessary information. A general rationale for focusing on equity impacts was often included, but few reviews explicitly justified their focus on (or exclusion of) specific dimensions. In addition to practical challenges such as data not being available, authors highlighted significant measurement and conceptual issues with applying these methods which may impair the ability to investigate and interpret differential impacts within and between studies. These issues included investigating constructs that lack standardized operationalization and measurement, and the complex nature of differential impacts, with dimensions that may interact with one another, as well as with particular temporal, personal, social or geographic contexts. CONCLUSION: PROGRESS-Plus is the predominant framework used in systematic reviews to conceptualize differential impacts of public health interventions by dimensions of equity. It appears sufficiently broad to encompass dimensions of equity examined in most investigations of this kind. However, PROGRESS-Plus does not necessarily ensure or guide critical thinking about more complex pathways, including interactions between dimensions of equity, and with wider contextual factors, and important practical, measurement and conceptual challenges remain. The findings from investigations of equity impacts in systematic reviews could be made more useful through more explicitly rationalized and considered approaches to the design, conduct and reporting of both primary research and the reviews themselves.