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Objective: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. Methods: A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results: 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution: A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up. [ABSTRACT FROM AUTHOR]

This paper examines how child welfare workers in England, Norway and the USA (California) perceive children's participation building on 91 qualitative interviews. First, analysing the data using Hart's ladder of children's participation, we found that all Norwegian workers perceived children's participation as some form of decision‐making, whereas 40% of English and 35% of US workers embraced views of children's participation that can be considered token or non‐participation. Second, we coded the data for main themes and found that child welfare workers in all three countries perceived children's participation as hearing the child's opinion and information gathering. The themes of age, maturity and ability to form an opinion also emerged from the data. English workers' reflections about children's participation were more nuanced than their Norwegian and US counterparts; and US workers understood children's participation as children providing valuable information during the investigation of a case more frequently than workers in England and Norway. We discuss the implications of these findings on future research. [ABSTRACT FROM AUTHOR]

Patient decision support (PDS) tools or decision aids have been developed as adjuncts to the clinical encounter. Their aim is to support evidence-based patient choice. Clinical trials of PDS tools have used an array of outcome measures to determine efficacy, including knowledge, satisfaction, health status and consistency between patient choice and values. This paper proposes that the correlation between 'subjective expected utility' (SEU) and decision may be the best primary endpoint for trials. SEU is a measure usually used in behavioural decision theory. The paper first describes how decision support tools may use decision analysis to structure the presentation of evidence and guide patient decision-making. Uses of expected utility (EU) are suggested for evaluating PDS tools when improving population health status is the objective. SEU is the theoretically better measure when internal consistency of patient choices is the objective.

Background: Refugees and migrants face suboptimal involvement in spaces for primary healthcare decision‐making. Given the rising numbers of resettled refugees and migrants in primary care settings in the United States, there is an urgent need for patient‐centred outcome research in practice‐based research networks (PBRNs) with diverse ethnolinguistic communities. This study explored whether researchers, clinicians and patients would achieve consensus on (1) a common set of clinical problems that were applicable across a PBRN and (2) potential clinical interventions to address those problems to inform a patient‐centred outcomes research (PCOR) study in a similar research network. Methods: In this qualitative participatory health research study, patients from diverse ethnolinguistic communities and clinicians from seven practices in a US PBRN discussed preferences for PCOR responsive to patients and the clinicians who serve them in language‐discordant settings. Researchers and an advisory panel that included patients and clinicians from each participating practice held regular advisory meetings to monitor progress on project milestones and solve emerging problems. Participants took part in 10 sessions using Participatory Learning in Action and the World Café methods to identify and prioritise their ideas, using questions set for them by the advisory panel. Data were analysed based on principles of qualitative thematic content analysis. Results: Participants identified common barriers in language‐discordant healthcare settings, principally patient‐clinician communication barriers and suggestions to overcome these barriers. A key finding was an unanticipated consensus about the need for attention to healthcare processes rather than a clinical research priority. Negotiation with research funders enabled further analysis of potential interventions for care processes to improve communication and shared decision‐making in consultations and the practice as a whole. Conclusion: PCOR studies should examine interventions for improving communication between patients from diverse ethnolinguistic communities and primary care staff if the sorts of harms experienced by patients experiencing language‐discordant healthcare are to be reduced or prevented. Flexibility and responsiveness from funders to unanticipated findings are key structural supports for participatory health research in primary care clinical settings with this population and others who experience marginalisation and exclusion. Patient or Public Contribution: Patients and clinicians participated in the study both in the formulation of the study question, data collection, analysis and dissemination of these results; consented to their individual participation; and reviewed early drafts of the manuscript. [ABSTRACT FROM AUTHOR]

Policy PointsPatients and families can identify clinically relevant errors, including "blindspots"—safety hazards that are difficult for clinicians or organizations to see.Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes.Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays. Context: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"—potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe. Method: We used mixed methods to analyze patient‐reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification. Findings: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low‐level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self‐identifying as Black, Asian, other, or multiple races; and participants who deferred decision‐making to providers were less likely to report a blindspot. Conclusion: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians—underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient‐reported blindspots, and promote equity in note access and blindspot reporting. [ABSTRACT FROM AUTHOR]

Objectives: To describe a pharmacist‐led campaign aimed at reducing the proportion of people with HIV with ongoing chronic hepatitis C virus (HCV) infection and delineating barriers to HCV care in this patient population. Methods: An electronic report and retrospective chart review were used to identify patients who remained with HCV infections after a previous treatment initiative. A clinical pharmacist and pharmacy resident approached the remaining HCV patients during their routine visits for HIV care to offer and coordinate direct‐acting antiviral (DAA) treatment. The primary end‐point was to compare the prevalence of chronic HCV before and after the intervention period. Barriers to care were also evaluated, with logistic regression performed to identify predictors of sustained virologic response (SVR) attainment. Results: Forty‐six patients were included in the analysis (4.2% of clinic population), with HCV prevalence falling to 0.6% (six patients) by the end of the study (p < 0.0001). The HCV care cascade in the cohort was as follows: 70% agreed to and received DAA therapy, 63% initiated therapy, and 50% achieved SVR. The top barriers to care at baseline included recreational drug use (67%), poor engagement in care (61%), and mental health disorders (28%). Poor engagement in care and active recreational drug use were associated with decreased odds of achieving SVR in bivariate analysis. Conclusions: A coordinated effort can make strides towards reducing the overall burden of HCV in this challenging population. The HCV care cascade remains tied to the HIV continuum of care, with poor engagement in care remaining an important rate‐limiting step impeding micro‐elimination. [ABSTRACT FROM AUTHOR]

Background: Patient engagement in research agenda setting is increasingly being seen as a strategy to improve the responsiveness of healthcare to patient priorities. Implementation of low‐dose computed tomography (LDCT) screening for lung cancer is suboptimal, suggesting that research is needed. Objectives: This study aimed to describe an approach by which a Veteran patient group worked with other stakeholders to develop a research agenda for LDCT screening and to describe the research questions that they prioritized. Methods: We worked with Veterans organizations to identify 12 Veterans or family members at risk for or having experience with lung cancer to form a Patient Advisory Council (PAC). The PAC met repeatedly from June 2018 to December 2020, both independently and jointly, with stakeholders representing clinicians, health administrators and researchers to identify relevant research topics. The PAC prioritized these topics and then identified questions within these areas where research was needed using an iterative process. Finally, they ranked the importance of obtaining answers to these questions. Results: PAC members valued the co‐learning generated by interactions with stakeholders, but emphasized the importance of facilitation to avoid stakeholders dominating the discussion. The PAC prioritized three broad research areas—(1) the impact of insurance on uptake of LDCT; (2) how best to inform Veterans about LDCT; and (3) follow‐up and impact of screening results. Using these areas as guides, PAC members identified 20 specific questions, ranking as most important (1) innovative outreach methods, (2) the impact of screening on psychological health, and (3) the impact of outsourcing scans from VA to non‐VA providers on completion of recommended follow‐up of screening results. The latter two were not identified as high priority by the stakeholder group. Conclusions: We present an approach that facilitates co‐learning between Veteran patients and providers, researchers and health system administrators to increase patient confidence in their ability to contribute important information to a research agenda. The research questions prioritized by the Veterans who participated in this project illustrate that for this new screening technology, patients are concerned about the practical details of implementation (e.g., follow‐up) and the technology's impact on quality of life. Patient or Public Contribution: Veterans and Veteran advocates contributed to our research team throughout the entire research process, including conceiving and co‐authoring this manuscript. [ABSTRACT FROM AUTHOR]

The release of genetically engineered organisms into the shared environment raises scientific, ethical, and societal issues. Using some form of democratic deliberation to provide the public with a voice on the policies that govern these technologies is important, but there has not been enough attention to how we should connect public deliberation to the existing regulatory process. Drawing on lessons from previous public deliberative efforts by U.S. federal agencies, we identify several practical issues that will need to be addressed if relevant federal agencies are to undertake public deliberative activities to inform decision‐making about gene editing in the wild. We argue that, while agencies may have institutional capacity to undertake public deliberative activities, there may not be sufficient political support for them to do so. Advocates of public deliberation need to make a stronger case to Congress about why federal agencies should be encouraged and supported to conduct public deliberations. [ABSTRACT FROM AUTHOR]

Environmental releases of gene edited (GEdOs) and gene drive organisms (GDOs) will likely occur under conditions of high uncertainty and in complex socioecological systems. Therefore, public deliberation is especially important to account for diverse interpretations of safety, risks, and benefits; to draw on experiential and public wisdom in areas of proposed release; to ameliorate dangers of technological optimism; and to increase the public legitimacy of decisions. Yet there is a "democratic deficit" in the United States' oversight system for GEdOs and GDOs, as unconflicted experts, publics, and skeptical stakeholders are most often excluded from decision‐making and unavailable to critically examine potential risks and benefits or raise broader concerns about socioeconomic or cultural impacts. This article argues for the need to open up decision‐making for GEdOs and GDOs, discusses the challenges for doing so within the current oversight framework, and finally, proposes institutional, policy, and attitudinal changes that are likely important for overcoming barriers to public deliberation. [ABSTRACT FROM AUTHOR]

The purpose of this meta‐analysis was to investigate the immediate and long‐term effects of intervention for children with primary speech and language delays/disorders and to explore whether some characteristics of interventions, specifics of the study and research participants moderate the magnitude of the effectiveness of interventions. Using the random effect model, we pooled the effect size and conducted a publication bias evaluation, a moderating effect analysis in CMA 2.0. Results of a random effects model analysis demonstrated a moderate immediate effect (g = 0.70), whereas the long‐term efficacy was small (g = 0.23). Additionally, type of measure, language of intervention, parental involvement, intervention content and study quality, as well as the duration of intervention, significantly moderated the effect size of intervention effectiveness. [ABSTRACT FROM AUTHOR]

Background: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas.Methods: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used.Results: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research.Conclusions: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research. [ABSTRACT FROM AUTHOR]

Background: The degree to which patients participate in their care can have a positive impact on health outcomes. This review aimed to map the current literature on patient participation behaviours in interactions with physicians and the extent to which differences in these behaviours can be explained by socio‐economic status (SES). Search strategy: Four electronic databases were searched from 1980 onwards using key words related to socio‐economic status and patient participation behaviours. Study selection: Titles, abstracts and full texts were screened by two reviewers, with the second reviewer screening 20% of all entries. Data extraction: Data on year of publication, country, patient population, setting, patient participation behaviour studied, and SES measure used were extracted. Main results: Forty‐nine studies were included in the review. Most studies were conducted in the United States, and the most commonly studied patient participation behaviour was involvement in decision making. Most studies measured SES using education as an indicator, with very few studies using occupation as a measure. Many studies did not report on participants' medical condition or study setting. Patient participation in their health‐care appointment increased with increasing SES in 24 studies, although in 27 studies no significant association was found. Discussion and conclusions: Current literature was found to be mainly US‐centric. Many studies did not specify participants' medical condition or in what setting the study was undertaken. More studies are needed on less commonly studied patient participation behaviours. It would be helpful for further studies to also include a wider range of SES indicators. [ABSTRACT FROM AUTHOR]

Background: Reflecting ("stop‐and‐think") before rating may help patients consider the quality of shared decision making (SDM) and mitigate ceiling/halo effects that limit the performance of self‐reported SDM measures. Methods: We asked a diverse patient sample from the United States to reflect on their care before completing the 3‐item CollaboRATE SDM measure. Study 1 focused on rephrasing CollaboRATE items to promote reflection before each item. Study 2 used 5 open‐ended questions (about what went well and what could be improved upon, signs that the clinician understood the patient's situation, how the situation will be addressed, and why this treatment plan makes sense) to invite reflection before using the whole scale. A linear analogue scale assessed the extent to which the plan of care made sense to the patient. Results: In Study 1, 107 participants completed surveys (84% response rate), 43 (40%) rated a clinical decision of which 27 (63%) after responding to reflection questions. Adding reflection lowered CollaboRATE scores ("less" SDM) and reduced the proportion of patients giving maximum (ceiling) scores (not statistically significant). In Study 2, 103 of 212 responders (49%) fully completed the version containing reflection questions. Reflection did not significantly change the distribution of CollaboRATE scores or of top scores. Participants indicated high scores on the sense of their care plan (mean 9.7 out of 10, SD 0.79). This rating was weakly correlated with total CollaboRATE scores (rho = .4, P = .0001). Conclusion: Reflection‐before‐quantification interventions may not improve the performance of patient‐reported measures of SDM with substantial ceiling/halo effects. [ABSTRACT FROM AUTHOR]

Policy PointsAccountable care organizations (ACOs) have incentives to promote the adoption of patient engagement strategies such as shared decision making and self‐management support programs to improve patient outcomes and contain health care costs.High adoption of patient engagement strategies among ACO‐affiliated practices did not improve patient‐reported outcomes (PROs) of physical, emotional, and social function among adult patients with diabetes and/or cardiovascular disease over a one‐year time frame, likely because implementing these strategies requires extensive clinician and staff training, workflow redesign, and patient participation over time.A dominant focus on improving clinical measures to meet external requirements may crowd out time needed for care team members to address other outcomes that matter to patients, including PROs.Payers and policy‐makers should explicitly incentivize the collection and use of PROs when contracting with ACOs. Context: Adult primary care practices of accountable care organizations (ACOs) are adopting a range of patient engagement strategies, but little is known about how these strategies are related to patient‐reported outcomes (PROs) and how relational coordination among team members aids implementation. Methods: We used a mixed‐methods cohort study design integrating administrative and clinical data with two data collection waves (2014‐2015 and 2016‐2017) of clinician and staff surveys (n = 764), surveys of adult patients with diabetes and/or cardiovascular disease (CVD) (n = 1,276), and key informant interviews of clinicians, staff, and administrators (n = 103). Multivariable linear regression estimated the relationship of practice adoption of patient engagement strategies, relational coordination, and PROs of physical, social, and emotional function. The mediating role of patient activation was examined using cross‐lagged panel models. Key informant interviews assessed how relational coordination influences the implementation of patient engagement strategies. Findings: There were no differential improvements in PROs among patients of practices with high vs. low adoption of patient engagement strategies or among patients of practices with high vs. low relational coordination. The Patient Activation Measure (PAM) is strongly related to better physical, emotional, and social PROs over time. Relational coordination facilitated the implementation of patient engagement strategies, but key informants indicated that resources and systems to systematically track treatment preferences and goals beyond clinical indicators were needed to support effective implementation. Conclusions: Adult patients with diabetes and/or CVD of ACO‐affiliated practices with high adoption of patient engagement strategies do not have improved PROs of physical, emotional, and social function over a one‐year time frame. Implementing patient engagement strategies increases task interdependence among primary care team members, which needs to be carefully managed. ACOs may need to make greater investment in collecting, monitoring, and analyzing PRO data to ensure that practice adoption and implementation of patient engagement strategies leads to improved physical, emotional, and social function among patients. [ABSTRACT FROM AUTHOR]

Objectives: As shared decision making (SDM) has received increased attention as a method to improve the patient‐centeredness of emergency department (ED) care, we sought to determine patients' desired level of involvement in medical decisions and their perceptions of potential barriers and facilitators to SDM in the ED. Methods: We surveyed a cross‐sectional sample of adult ED patients at three academic medical centers across the United States. The survey included 32 items regarding patient involvement in medical decisions including a modified Control Preference Scale and questions about barriers and facilitators to SDM in the ED. Items were developed and refined based on prior literature and qualitative interviews with ED patients. Research assistants administered the survey in person. Results: Of 797 patients approached, 661 (83%) agreed to participate. Participants were 52% female, 45% white, and 30% Hispanic. The majority of respondents (85%–92%, depending on decision type) expressed a desire for some degree of involvement in decision making in the ED, while 8% to 15% preferred to leave decision making to their physician alone. Ninety‐eight percent wanted to be involved with decisions when "something serious is going on." The majority of patients (94%) indicated that self‐efficacy was not a barrier to SDM in the ED. However, most patients (55%) reported a tendency to defer to the physician's decision making during an ED visit, with about half reporting they would wait for a physician to ask them to be involved. Conclusion: We found that the majority of ED patients in our large, diverse sample wanted to be involved in medical decisions, especially in the case of a "serious" medical problem, and felt that they had the ability to do so. Nevertheless, many patients were unlikely to actively seek involvement and defaulted to allowing the physician to make decisions during the ED visit. After fully explaining the consequences of a decision, clinicians should make an effort to explicitly ascertain patients' desired level of involvement in decision making. [ABSTRACT FROM AUTHOR]

Objective: To examine the relationship between medical home transformation and patient experience of chronic illness care.Study Setting: Thirteen safety net clinics located in five states enrolled in the Safety Net Medical Home Initiative.Study Design: Repeated cross-sectional surveys of randomly selected adult patients were completed at baseline (n = 303) and postintervention (n = 271).Data Collection Methods: Questions from the Patient Assessment of Chronic Illness Care (PACIC) (100-point scale) were used to capture patient experience of chronic illness care. Generalized estimating equation methods were used to (i) estimate how differential improvement in patient-centered medical home (PCMH) capability affected differences in modified PACIC scores between baseline and postintervention, and (ii) to examine cross-sectional associations between PCMH capability and modified PACIC scores for patients at completion of the intervention.Principal Findings: In adjusted analyses, high PCMH improvement (above median) was only marginally associated with a larger increase in total modified PACIC score (adjusted β = 7.7, 95 percent confidence interval [CI]: -1.1 to 16.5). At completion of the intervention, a 10-point higher PCMH capability score was associated with an 8.9-point higher total modified PACIC score (95 percent CI: 3.1-14.7) and higher scores in four of five subdomains (patient activation, delivery system design, contextual care, and follow-up/coordination).Conclusions: We report that sustained, 5-year medical home transformation may be associated with modest improvement in patient experience of chronic illness care for vulnerable populations in safety net clinics. [ABSTRACT FROM AUTHOR]

Objectives: Greater patient activation, defined as having the knowledge, skills, and confidence to manage one's health, is associated with cancer control behaviors. Cancer risk beliefs may be associated with patient activation, and delineating this relationship could inform cancer control interventions across diverse patient subgroups. This study examines associations between cancer risk beliefs, language preference, and patient activation within a multilingual urban primary care setting.Design: Patients 18 years and older within a New York City public hospital serving a large proportion of non-native-born Americans were surveyed regarding their cancer risk beliefs and patient activation in Haitian Creole, Spanish, or English based on language preference during a health care visit.Results: The sample (N = 460) included 150 Haitian Creole speakers, 159 Spanish speakers, and 151 English speakers and was primarily non-White (92%). Most participants (84%) had not been born in the United States. Cancer risk beliefs differed across language preference. Beliefs that cancer could be avoided by minimizing thoughts about cancer risk were significantly higher in Haitian Creole speakers than in others; reported negative emotion when thinking about cancer risk was higher in Spanish and English than in Haitian Creole speakers. These cancer risk beliefs were positively related to patient activation, even when controlling for language preference.Conclusion: Cancer risk beliefs differ across language preference and are related to patient activation, making them potentially important in cancer control. Consideration of language represents important demographic stratification for understanding the frequency and relevance of different beliefs about cancer and patient activation. [ABSTRACT FROM AUTHOR]

Background Public involvement in health-care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain. Objectives To review the peer-reviewed empirical evidence on outcomes of public involvement in health-care policy. Methods We systematically searched Psych INFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings. Main results Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented. Conclusions Despite the growing body of work on public involvement in health-care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health-care policy process may be seen to be of intrinsic value. [ABSTRACT FROM AUTHOR]

Background The Institute of Medicine recently recommended that comparative effectiveness research (CER) should involve input from consumers. While systematic reviews are a major component of CER, little is known about consumer involvement. Objective To explore current approaches to involving consumers in US-based and key international organizations and groups conducting or commissioning systematic reviews ('organizations'). Design In-depth, semi-structured interviews with key informants and review of organizations' websites. Setting and participants Seventeen highly regarded US-based and international (Cochrane Collaboration, Campbell Collaboration) organizations. Results Organizations that usually involve consumers (seven of 17 in our sample) involve them at a programmatic level in the organization or in individual reviews through one-time consultation or on-going collaboration. For example, consumers may suggest topics, provide input on the key questions of the review, provide comments on draft protocols and reports, serve as co-authors or on an advisory group. Organizations involve different types of consumers (individual patients, consumer advocates, families and caregivers), recruiting them mainly through patient organizations and consumer networks. Some offer training in research methods, and one developed training for researchers on how to involve consumers. Little formal evaluation of the effects of consumer involvement is being carried out. Conclusions Consumers are currently involved in systematic reviews in a variety of ways and for various reasons. Assessing which approaches are most effective in achieving different aims of consumer involvement is now required to inform future recommendations on consumer involvement in CER. [ABSTRACT FROM AUTHOR]

The prevalence of obesity in America has reached epidemic proportions, and obesity among women is particularly concerning. Severe obesity (body mass index ≥35 kg m−2) is more prevalent in women than men. Further, women have sex-specific risk factors that must be considered when developing preventive and therapeutic interventions. This review presents personalized medicine as a dynamic approach to obesity prevention, management and treatment for women. First, we review obesity as a complex health issue, with contributing sex-specific, demographic, psychosocial, behavioural, environmental, epigenetic and genetic/genomic risk factors. Second, we present personalized medicine as a rapidly advancing field of health care that seeks to quantify these complex risk factors to develop more targeted and effective strategies that can improve disease management and/or better minimize an individual's likelihood of developing obesity. Third, we discuss how personalized medicine can be applied in a clinical setting with current and emerging tools, including health risk assessments, personalized health plans, and strategies for increasing patient engagement. Finally, we discuss the need for additional research, training and policy that can enhance the practice of personalized medicine in women's obesity, including further advancements in the '-omics' sciences, physician training in personalized medicine, and additional development and standardization of innovative targeted therapies and clinical tools. [ABSTRACT FROM AUTHOR]

The English health-care system is moving towards increasing consumers' choice. Following economic thinking, it is assumed that such a policy will improve quality, enhance patient satisfaction and reduce health disparities. Indeed, the English health-care system has already built the necessary infrastructure to increase patients' choice. Before expanding the range of choices further, however, it is important that policy makers be aware of the limitations and hurdles that such a policy contains. Here, we highlight these limitations by drawing on the influential work of Kenneth Arrow, who has argued that we cannot treat the health-care market as if it was just another market, and the ideas of Herbert Simon, who questioned whether people had sufficient cognitive abilities to make effective choices in an information-rich environment. In the light of these two strands of thought, we review evidence suggesting that many older adults have low (health) literacy levels, raising concerns over their ability to obtain, process and understand medical-related information, with its increasing complexity, associated risks and emotional involvement. We also discuss recent findings from the United States highlighting the difficulties older users of health-care face with a wide range of prescription drug insurance plans from which to choose. Thus, learning from the experience of health-care systems where choice is abundant could help any health system interested in extending patients' choice to better target the domains where more choice could be beneficial and possibly avoid those where it could be detrimental. [ABSTRACT FROM AUTHOR]

Objective: To assess the effects of CAHPS health plan performance information on plan choices and decision processes by New Jersey Medicaid beneficiaries.Data Sources/study Setting: The study sample was a statewide sample of all new Medicaid cases that chose Medicaid health plans during April 1998. The study used state data on health maintenance organization (HMO) enrollments and survey data for a subset of these cases.Study Design: An experimental design was used, with new Medicaid cases randomly assigned to experimental or control groups. The experimental group received a CAHPS report along with the standard enrollment materials, and the control group did not.Data Collection: The HMO enrollment data were obtained from the state in June 1998, and evaluation survey data were collected from July to October 1998.Principal Findings: No effects of CAHPS information on HMO choices were found for the total sample. Further examination revealed that only about half the Medicaid cases said they received and read the plan report and there was an HMO with dominant Medicaid market share but low CAHPS performance scores. The subset of cases who read the report and did not choose this dominant HMO chose HMOs with higher CAHPS scores, on average, than did those in an equivalent control group.Conclusions: Health plan performance information can influence plan choices by Medicaid beneficiaries, but will do so only if they actually read it. These findings suggest a need for enhancing dissemination of the information as well as further education to encourage informed choices. [ABSTRACT FROM AUTHOR]