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Concerns about genetic privacy affect individuals' willingness to accept genetic testing in clinical care and to participate in genomics research. To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data. Bibliographic databases included MEDLINE, Web of Knowledge, and Sociological Abstracts. Three investigators independently screened studies against predetermined criteria and assessed risk of bias. The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically \"are you worried about genetic privacy,\" the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data. They were more concerned about use by employers, insurers, and the government than they were about researchers and commercial entities. In addition, people are often willing to give up some privacy to obtain other goods. Importantly, little attention was paid to understanding the factors-sociocultural, relational, and media-that influence people's opinions and decisions. Future investigations should explore in greater depth which concerns about genetic privacy are most salient to people and the social forces and contexts that influence those perceptions. It is also critical to identify the social practices that will make the collection and use of these data more trustworthy for participants as well as to identify the circumstances that lead people to set aside worries and decide to participate in research.

In 2011, an Advanced Notice of Proposed Rulemaking proposed that de-identified human data and specimens be included in biobanks only if patients provide consent. The National Institutes of Health Genomic Data Sharing policy went into effect in 2015, requiring broad consent from almost all research participants. We conducted a systematic literature review of attitudes toward biobanking, broad consent, and data sharing. Bibliographic databases included MEDLINE, Web of Science, EthxWeb, and GenETHX. Study screening was conducted using DistillerSR. The final 48 studies included surveys (n = 23), focus groups (n = 8), mixed methods (n = 14), interviews (n = 1), and consent form analyses (n = 2). Study quality was characterized as good (n = 19), fair (n = 27), and poor (n = 2). Although many participants objected, broad consent was often preferred over tiered or study-specific consent, particularly when broad consent was the only option, samples were de-identified, logistics of biobanks were communicated, and privacy was addressed. Willingness for data to be shared was high, but it was lower among individuals from under-represented minorities, individuals with privacy and confidentiality concerns, and when pharmaceutical companies had access to data. Additional research is needed to understand factors affecting willingness to give broad consent for biobank research and data sharing in order to address concerns to enhance acceptability.

•Few studies provide validated algorithms for identification of SLE in a broad based population.•The majority of studies assessed algorithms including ICD-9 code 710.0 in selected populations.•The selected populations are primarily characterized as those seen by a rheumatologist.•The PPV of ICD-9 code 710.0 in selected populations is in the range of 70–90%.•Of the limited data in general populations the PPV of ICD-9 code 710.0 is in the range of 50–60%. To examine the validity of billing, procedural, or diagnosis code, or pharmacy claim-based algorithms used to identify patients with systemic lupus erythematosus (SLE) in administrative and claims databases. We searched the MEDLINE database from 1991 to September 2012 using controlled vocabulary and key terms related to SLE. We also searched the reference lists of included studies. Two investigators independently assessed the full text of studies against pre-determined inclusion criteria. The two reviewers independently extracted data regarding participant and algorithm characteristics and assessed a study's methodologic rigor using a pre-defined approach. Twelve studies included validation statistics for the identification of SLE in administrative and claims databases. Seven of these studies used the ICD-9 code of 710.0 in selected populations of patients seen by a rheumatologist or patients who had experienced the complication of SLE-associated nephritis, other kidney disease, or pregnancy. The other studies looked at limited data in general populations. The algorithm in the selected populations had a positive predictive value (PPV) in the range of 70–90% and of the limited data in general populations it was in the range of 50–60%. Few studies use rigorous methods to validate an algorithm for the identification of SLE in general populations. Algorithms including ICD-9 code of 710.0 in physician billing and hospitalization records have a PPV of approximately 60%. A requirement that the code is obtained from a record based on treatment by a rheumatologist increases the PPV of the algorithm but limits the generalizability in the general population.

To identify evidence syntheses of health interventions addressing racial health equity reporting the use of equity-focused frameworks and logic models.OBJECTIVESTo identify evidence syntheses of health interventions addressing racial health equity reporting the use of equity-focused frameworks and logic models.The search strategy included three sources; a search of three bibliographic databases to identify systematic reviews assessing interventions to improve racial health equity, semistructured interviews with diverse group and a targeted organization website searches (eg, National Institute of Health, United States Preventive Services Task Force) to identify relevant logic models and frameworks. The searches were conducted between January 1, 2020, and January 25, 2023. We used a qualitative approach to identify and describe key characteristics of equity-focused logic models and frameworks used in evidence syntheses.STUDY DESIGN AND SETTINGThe search strategy included three sources; a search of three bibliographic databases to identify systematic reviews assessing interventions to improve racial health equity, semistructured interviews with diverse group and a targeted organization website searches (eg, National Institute of Health, United States Preventive Services Task Force) to identify relevant logic models and frameworks. The searches were conducted between January 1, 2020, and January 25, 2023. We used a qualitative approach to identify and describe key characteristics of equity-focused logic models and frameworks used in evidence syntheses.Of the 153 racial health equity-focused evidence syntheses identified, two explicitly used logic models to describe the intervention mechanism. We identified seven existing health equity frameworks from semistructured interviews and electronic search of key websites that were categorized by stated purpose as providing guidance for 1) research, 2) health policy, 3) digital health-care solutions, and 4) clinical preventive services. Two out of seven frameworks included guidance on integrating frameworks or logic models in evidence synthesis while the majority provided contextual information on how to define or consider race or racism as a structural determinant of health.RESULTSOf the 153 racial health equity-focused evidence syntheses identified, two explicitly used logic models to describe the intervention mechanism. We identified seven existing health equity frameworks from semistructured interviews and electronic search of key websites that were categorized by stated purpose as providing guidance for 1) research, 2) health policy, 3) digital health-care solutions, and 4) clinical preventive services. Two out of seven frameworks included guidance on integrating frameworks or logic models in evidence synthesis while the majority provided contextual information on how to define or consider race or racism as a structural determinant of health.There is limited use of logic models and frameworks in evidence syntheses addressing racial health equity. There is a need for more applied frameworks providing guidance for framing, conducting and interpreting findings of evidence syntheses addressing racial health equity.CONCLUSIONThere is limited use of logic models and frameworks in evidence syntheses addressing racial health equity. There is a need for more applied frameworks providing guidance for framing, conducting and interpreting findings of evidence syntheses addressing racial health equity.The goal of this study was to find reviews of health programs that focus on improving racial health equity, and to see if they used special frameworks or models designed to address equity. To do this, we searched three major research databases, conducted interviews with a diverse group of people, and looked at relevant organization websites (like the National Institute of Health and the World Health Organization) between January 2020 and January 2023. We used a qualitative approach to study the key features of these equity-focused frameworks and models. We found 153 reviews focused on racial health equity, but only two of them used logic models to explain the intervention. From interviews and website searches, we identified seven existing health equity frameworks. These were grouped into four categories: research, health policy, digital health care, and clinical preventive services. Only two of these frameworks provided advice on how to use them in evidence reviews, while most focused on understanding how race and racism impact health as a social factor. In conclusion, there is limited use of frameworks and models in reviews about racial health equity. More practical frameworks are needed to help guide the research and interpretation of these reviews.PLAIN LANGUAGE SUMMARYThe goal of this study was to find reviews of health programs that focus on improving racial health equity, and to see if they used special frameworks or models designed to address equity. To do this, we searched three major research databases, conducted interviews with a diverse group of people, and looked at relevant organization websites (like the National Institute of Health and the World Health Organization) between January 2020 and January 2023. We used a qualitative approach to study the key features of these equity-focused frameworks and models. We found 153 reviews focused on racial health equity, but only two of them used logic models to explain the intervention. From interviews and website searches, we identified seven existing health equity frameworks. These were grouped into four categories: research, health policy, digital health care, and clinical preventive services. Only two of these frameworks provided advice on how to use them in evidence reviews, while most focused on understanding how race and racism impact health as a social factor. In conclusion, there is limited use of frameworks and models in reviews about racial health equity. More practical frameworks are needed to help guide the research and interpretation of these reviews.

To explore healthcare professionals' perceptions of challenges to chronic pain management. Qualitative interview study. Semistructured telephone interviews with healthcare professionals involved in chronic pain management and thematic analysis of transcriptions. Respondents (N = 16) described multiple challenges to chronic pain management: Management occurs in a complex care context complicated by the multidimensional, subjective nature of pain. A lack of systematic approaches fosters variation in care, and clinicians lack time and resources to manage pain holistically. Efforts to date have focused primarily on opioid reduction versus strategic approaches to manage chronic pain across the system. Comprehensive approaches to identify and manage chronic pain are nascent and, typically, narrowly focused on reducing opioid use. Respondents, however, recognized the importance of effective systematic management across inpatient and outpatient settings. These findings underscore the need to consider chronic pain as a chronic condition that warrants coordinated approaches to care such as standardized assessments; consistent, patient-centered outcome measures; and multimodal treatments that target both physical relief and underlying psychosocial factors.

To identify evidence syntheses of health interventions addressing racial health equity reporting the use of equity-focused frameworks and logic models. The search strategy included three sources; a search of three bibliographic databases to identify systematic reviews assessing interventions to improve racial health equity, semistructured interviews with diverse group and a targeted organization website searches (eg, National Institute of Health, United States Preventive Services Task Force) to identify relevant logic models and frameworks. The searches were conducted between January 1, 2020, and January 25, 2023. We used a qualitative approach to identify and describe key characteristics of equity-focused logic models and frameworks used in evidence syntheses. Of the 153 racial health equity-focused evidence syntheses identified, two explicitly used logic models to describe the intervention mechanism. We identified seven existing health equity frameworks from semistructured interviews and electronic search of key websites that were categorized by stated purpose as providing guidance for 1) research, 2) health policy, 3) digital health-care solutions, and 4) clinical preventive services. Two out of seven frameworks included guidance on integrating frameworks or logic models in evidence synthesis while the majority provided contextual information on how to define or consider race or racism as a structural determinant of health. There is limited use of logic models and frameworks in evidence syntheses addressing racial health equity. There is a need for more applied frameworks providing guidance for framing, conducting and interpreting findings of evidence syntheses addressing racial health equity. The goal of this study was to find reviews of health programs that focus on improving racial health equity, and to see if they used special frameworks or models designed to address equity. To do this, we searched three major research databases, conducted interviews with a diverse group of people, and looked at relevant organization websites (like the National Institute of Health and the World Health Organization) between January 2020 and January 2023. We used a qualitative approach to study the key features of these equity-focused frameworks and models. We found 153 reviews focused on racial health equity, but only two of them used logic models to explain the intervention. From interviews and website searches, we identified seven existing health equity frameworks. These were grouped into four categories: research, health policy, digital health care, and clinical preventive services. Only two of these frameworks provided advice on how to use them in evidence reviews, while most focused on understanding how race and racism impact health as a social factor. In conclusion, there is limited use of frameworks and models in reviews about racial health equity. More practical frameworks are needed to help guide the research and interpretation of these reviews.

To inform methods for centering racial health equity in syntheses, we explored (1) how syntheses that assess health-related interventions and explicitly address racial health inequities have engaged interest holders and (2) guidance for engaging racially and ethnically diverse interest holders. We systematically identified evidence syntheses (searches limited to January 1, 2020, through January 25, 2023) and guidance documents (no search date limits) for this overview. From syntheses we extracted data on engagement rationale and processes and extracted approaches suggested from guidance documents. We summarized findings qualitatively. Twenty-nine of the 157 (18%) eligible syntheses reported using engagement. Syntheses typically lacked robust detail on why and how to use and structure engagement and outcomes/effects of engagement, though syntheses involving Indigenous populations typically included more detail. When reported, engagement typically occurred in early and later synthesis phases. We did not identify guidance documents that specifically intended to provide guidance for engaging racially/ethnically diverse individuals in syntheses; some related guidance described broader equity considerations or engagement in general. This review highlights gaps in understanding of the use of engagement in racial health equity-focused syntheses and in guidance specifically addressing engaging racially and ethnically diverse populations. Syntheses and guidance materials we identified reported limited data addressing the whys, hows, and whats (ie, rationale for, approaches to, resources needed and effects of) of engagement, and we lack information for understanding whether engagement makes a difference to the conduct and findings of syntheses and when and how engagement of specific populations may contribute to centering racial health equity. A more informed understanding of these issues, facilitated by prospective and retrospective descriptions of engagement of diverse interest holders, may help advance actionable guidance and reviews. We identified evidence syntheses (a kind of research that identifies and summarizes findings of individual studies or publications to address research questions) that looked at studies of interventions to improve differences in effects on health for racial or ethnic populations to see (1) if and how they incorporated perspectives of interest holders, people with an interest in the subject being studied; (2) what guidance for how to engage or involve racially or ethnically diverse interest holders exists. We found that 29 of 157 syntheses addressing interventions to improve differences in effects on health reported involving interest holders but typically did not provide much detail about how to involve people. Syntheses that involved Indigenous people usually had more information, but overall, the syntheses did not have much information about how to involve people and what the impact of involving them may be. We did not find guidance information that specifically set out to provide information about engaging racially/ethnically diverse individuals in syntheses; some related guidance described considerations about involving people in syntheses in general. This review highlights gaps in understanding of how to engage people in racial health equity-focused syntheses and in guidance specifically addressing engaging racially and ethnically diverse populations. Syntheses and guidance materials we identified reported limited information about whys, hows, and whats (ie, reasons to use, how to do, and resources needed and effects of) related to engagement, and we lack information to help understand whether engagement makes a difference in doing syntheses and when and how engagement of specific populations may help to address racial health equity. [Display omitted]

The websites of prominent public health and health care organizations play pivotal roles in ensuring access to quality health information, including information guiding health equity. Several initiatives have been developed in the United States to promote equitable, fair, and inclusive health information and practices across prominent health websites. Currently, health disparities across racial groups are recognized as a critical public health problem. Simultaneously, the use of the term \"racial health equity/equities\" has been rising in academic literature. However, the definition and findability of \"racial health equity/equities\" information have not yet been evaluated in health websites. Thus, we used a systematic review approach to assess the findability and availability of racial health equity terminology and definitions across prominent health organization websites. The objective of this study was to systematically evaluate the definitions and findability of \"racial health equity/equities and related terms\" on prominent health organizations' websites. We conducted a systematic review of websites from government agencies, professional organizations, and selected health care organizations with relevance to the US health care system. Google and the US Digital Analytics program were used for initial searches. Definitions, terms, and accompanying citations for racial health equity terms, including \"racial health inequity\" or \"racial health disparities,\" were extracted from all websites. A findability tool was developed to evaluate the ease of finding the terms and definitions, with ratings ranging from \"very easy\" to \"very difficult.\" Additionally, we analyzed the themes and sentiments of the retrieved definitions. We analyzed 69 websites from prominent health organizations. Approximately half (n=31) of the websites lacked any definitions for racial health equity and related terms, and of the 38 that included definitions, most did not include citations. The definitions varied across websites, and most were rated as \"very difficult\" to find. This study highlights the absence of a systematic, standardized, and accurate approach to organizing, defining, and presenting racial health equity information on prominent health websites. Specifically, there is a lack of consistent definitions for racial health equity and related terms across prominent health organization websites.

Systematic reviews hold immense promise as tools to highlight evidence-based practices that can reduce or aim to eliminate racial health disparities. Currently, consensus on centering racial health equity in systematic reviews and other evidence synthesis products is lacking. Centering racial health equity implies concentrating or focusing attention on health equity in ways that bring attention to the perspectives or needs of groups that are typically marginalized. This Cochrane US Network team and colleagues, with the guidance of a steering committee, sought to understand the views of varied interest holders through semistructured interviews and conducted evidence syntheses addressing (1) definitions of racial health equity, (2) logic models and frameworks to centering racial health equity, (3) interventions to reduce racial health inequities, and (4) interest holder engagement in evidence syntheses. Our methods and teams include a primarily American and Canadian lens; however, findings and insights derived from this work are applicable to any region in which racial or ethnic discrimination and disparities in care due to structural causes exist. In this series, we explain why centering racial health equity matters and what gaps exist and may need to be prioritized. The interviews and systematic reviews identified numerous gaps to address racial health equity that require changes not merely to evidence synthesis practices but also to the underlying evidence ecosystem. These changes include increasing representation, establishing foundational guidance (on definitions and causal mechanisms and models, building a substantive evidence base on racial health equity, strengthening methods guidance, disseminating and implementing results, and sustaining new practices). Centering racial health equity requires consensus on the part of key interest holders. As part of the next steps in building consensus, the manifold gaps identified by this series of papers need to be prioritized. Given the resource constraints, changes in norms around systematic reviews are most likely to occur when evidence-based standards for success are clearly established and the benefits of centering racial health equity are apparent. Racial categories are not based on biology, but racism has negative biological effects. People from racial or ethnic minority groups have often been left out of research and ignored in systematic reviews. Systematic reviews often help clinicians and policymakers with evidence-based decisions. Centering racial health equity in systematic reviews will help clinicians and policymakers to improve outcomes for people from racial or ethnic minority groups. We conducted interviews and a series of four systematic reviews on definitions, logic models and frameworks, methods, interventions, and interest-holder engagement in syntheses. We found that much work remains to be done in centering racial health equity in systematic reviews. Specifically, systematic reviewers need to change who is represented on their teams, establish foundational guidance (on definitions and causal mechanisms and models, identify what interventions work to address racial health equity, strengthen method guidance, disseminate and implement results, and sustain new practices).

We aim to (1) evaluate the methods used in systematic reviews of interventions focused on racialized populations to improve racial health equity and (2) examine the types of interventions evaluated for advancing racial health equity in systematic reviews. We searched MEDLINE, Cochrane, and Campbell databases for reviews evaluating interventions focused on racialized populations to mitigate racial health inequities, published from January 2020 to January 2023. We analyzed 157 reviews on racialized populations. Only 22 (14%) reviews addressed racism's role in driving racial health inequities related to the review question. Eleven percent (7) of reviews considered intersectionality when conceptualizing racial inequities. Two-thirds (105, 67%) provided descriptive summaries of included studies rather than synthesizing them. Among those that quantified effect sizes, 54% (21) used biased synthesis methods like vote counting. The most common method assessed was tailoring interventions to meet the needs of racialized populations. Reviews mainly focused on assessing interventions to reduce racial disparities rather than enhancing structural opportunities for racialized populations. Reviews for racial health equity could be improved by enhancing methodologic quality, defining the role of racism in the question, using reliable analytical methods, and assessing process and implementation outcomes. More focus is needed on assessing structural interventions to improve opportunities for racialized populations and prioritize these issues in political and social agendas.