Search

Introduction Collabo RATE is a brief patient survey focused on shared decision making. This paper aims to (i) provide insight on facilitators and challenges to implementing a real-time patient survey and (ii) evaluate Collabo RATE scores and response rates across multiple clinical settings with varied patient populations. Method All adult patients at three United States primary care practices were eligible to complete Collabo RATE post-visit. To inform key learnings, we aggregated all mentions of unanticipated decisions, problems and administration errors from field notes and email communications. Mixed-effects logistic regression evaluated the impact of site, clinician, patient age and patient gender on the Collabo RATE score. Results While Collabo RATE score increased only slightly with increasing patient age ( OR 1.018, 95% CI 1.014-1.021), female patient gender was associated with significantly higher Collabo RATE scores ( OR 1.224, 95% CI 1.073-1.397). Clinician also predicts Collabo RATE score (random effect variance 0.146). Site-specific factors such as clinical workflow and checkout procedures play a key role in successful in-clinic implementation and are significantly related to Collabo RATE scores, with Site 3 scoring significantly higher than Site 1 ( OR 1.759, 95% CI 1.216 to 2.545) or Site 2 (z=−2.71, 95% CI −1.114 to −0.178). Discussion This study demonstrates that Collabo RATE can be used in diverse primary care settings. A clinic's workflow plays a crucial role in implementation. Patient experience measurement risks becoming a burden to both patients and administrators. Episodic use of short measurement tools could reduce this burden. [ABSTRACT FROM AUTHOR]

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]

Background: Children with medical complexity (CMC) often face significant barriers to accessing care, obtaining appropriate insurance coverage for medical devices, technology, supplies, home nursing and social services. These challenges, when viewed through the lens of social determinants of health, highlight concerns about healthcare inequity. These inequities can impact CMC by limiting access to follow‐up appointments, leading to disproportionate use of emergency department services, restricting support services, reducing the quality of medical products and increasing the likelihood of adverse events. Addressing these concerns requires comprehensive policy changes at both state and federal levels. Achieving successful collaborations between states and federal agencies is particularly challenging and may take months or even years to accomplish. Objectives: Through an exploratory qualitative approach, this study facilitates a nuanced inquiry into the experiences and systemic challenges encountered by medical professionals and primary caregivers managing CMC who require a paediatric tracheostomy. Methods: Qualitative interviews were conducted with 17 health professionals and primary caregivers residing in the United States. A thematic analysis was used to analyse the transcribed interview data. Results: Using exploratory thematic analysis, we identified challenges and opportunities for improvement regarding (a) access to health insurance, (b) procurement of essential medical supplies, (c) logistical constraints and (d) identifying interim solutions. Conclusion: Building on our findings, we discuss how socioecological factors impact health and quality of life of CMC and families. Additionally, we address the growing gap in quality of care through a comprehensive approach that considers patient needs, regulatory frameworks and affordability. Patient or Public Contribution: Medical practitioners and healthcare professionals were actively involved in the development, production and implementation of the research project. These individuals were given the opportunity to review their statements and review the manuscript before publishing. While caregivers did not engage in member checking, each provided their consent before data collection. [ABSTRACT FROM AUTHOR]

Objectives: Providing personal demographic information is routine practice in the United States, and yet, little is known about the impacts of this process. This study aims to examine the experiences and perspectives of Multiracial/ethnic adults in the United States when disclosing racial/ethnic identity. Methods: Seventeen semistructured interviews were conducted with adults identifying as Multiracial/ethnic. The Multiracial/ethnic identities of participants included Black or African American and White; Black or African American, American Indian or Alaska Native (AI/AN) and Hispanic or Latino; Black or African American and Hispanic or Latino; Black or African American and AI/AN; AI/AN and White and Asian, Native Hawaiian or Pacific Islander and White. Multiple participants reported identifying with multiple ethnic groups for any single broad category. Three identified as sexual minorities. Nine were Millennials; six were Gen X; one was Gen Z; one was Baby Boomer. Qualitative data were analyzed using staged hybrid inductive–deductive thematic analysis. Results: Disclosure of racial and ethnic identities presents a unique stressor for Multiracial/ethnic populations due to methods used to obtain data, perceived mismatch of identity and phenotype and exposure to prejudice. Social norms, constructs and movements impact the categories that a Multiracial/ethnic person indicates to external parties. Conclusions: The stress and negative feelings that Multiracial/ethnic adults face when identifying their race/ethnicity underscore the broader implications of standard demographic questions on feelings of inclusivity and visibility within a population. Patient or Public Contribution: Gathering data on individuals' racial and ethnic backgrounds is a standard practice, and yet, it can pose challenges for those who identify with multiple groups or do not see their identities reflected in the options provided. Such individuals may feel excluded or experience unfair treatment when disclosing their identity, leading to significant stress. As the frequency of this data collection increases, it is essential that the questions are posed empathetically and equitably, with a strong commitment to enhancing inclusivity throughout the process. [ABSTRACT FROM AUTHOR]

Objective: This paper investigates the change through time in the perception of smoking‐related health harm and smoking behaviour from 1949 to 1981. Background and context: A variety of common behaviours can be linked to chronic disease risk—smoking, over‐eating, and excessive sitting, to name a few. Changing behaviours to reduce exposure to such risks can be an effort that spans generations and decades. Setting and participants: Respondents to Gallup Poll surveys in the United States from 1949, 1954, 1957, 1971, 1972, 1977 and 1981. Methods: Graphical analysis and probit regression are used to investigate trends through time and statistical associations of smoking with the perception of smoking‐related health risks and other socio‐demographic variables. Intervention and main variable studied: Perceived smoking health risk. Main outcome measure: Smoking participation. Results and conclusion: Our findings include the proportions of individuals who were self‐reported smokers fell between 1949 and 1981, from 0.48 to 0.34. Among smokers, the proportion who believed smoking was harmful increased from 0.52 in 1949 to 0.81 in 1981. By 1981, the proportion of non‐smokers who believed smoking was harmful was 0.98. A negative association between belief in smoking harm and the decision to smoke was shown in regression analysis. This association became more pronounced over the three decades under study. [ABSTRACT FROM AUTHOR]

Objective This paper examines how negative experiences with the health-care system create a lack of confidence in receiving medical care in seven countries: Australia, Canada, Germany, the Netherlands, New Zealand, the United Kingdom, and the United States. Methods The empirical analysis is based on data from the Commonwealth Fund International Health Policy Survey 2007, with nationally representative samples of adults aged 18 and over. For the analysis of the experience of cost barriers and confidence in receiving medical care, we conducted pairwise comparisons of group percentages as well as country-wise multivariate logistic regression models. Results Individuals who have experienced cost barriers show a significantly lower level of confidence in receiving safe and quality medical care than those who have not. This effect is most pronounced in the United States, where people who have foregone necessary treatment because of costs are four times as likely to lack confidence as individuals without the experience of cost barriers (adjusted odds ratio 4.00). In New Zealand, Germany, and Canada, individuals with the experience of cost barriers are twice as likely to report low confidence compared with those without this experience (adjusted odds ratios of 1.95, 2.19 and 2.24, respectively). In the Netherlands and UK, cost barriers are only a marginal phenomenon. Conclusions The fact that the experience of financial barriers considerably lowers confidence indicates that financial incentives, such as private co-payments, have a negative effect on overall public support and therefore on the legitimacy of health-care systems. [ABSTRACT FROM AUTHOR]

Background National governments across the globe have set goals to improve healthcare delivery. Understanding patient–provider communication is essential for the development of policies that measure how well a healthcare system delivers care. Objectives This study was designed to determine which, if any, demographic factors were independently associated with how US patients perceive various aspects of communication with their healthcare providers. Design and methods The study was a secondary, cross-sectional analysis of nationally representative data from the 2002 Medical Expenditure Panel Survey (MEPS). Among US adults with a healthcare visit in the past year ( n = approximately 16 700), we assessed the association between several covariate demographic and socioeconomic factors and four dependent measures of patient perceptions of communication with their healthcare providers. Results Across all four measures of communication, older patients were more likely to report positively. Having health insurance and a usual source of care were consistent predictors of positive perceptions of communication. Hispanic patients also reported better perceptions of communication across all four measures. The most economically disadvantaged patients were less likely to report that providers always explained things so that they understood. Male patients were more likely to report that providers always spent enough time with them. Conclusions This study suggests that patient perceptions of communication in healthcare settings vary widely by demographics and other individual patient characteristics. In this paper, we discuss the relevance of these communication disparities to design policies to improve healthcare systems, both at the individual practice level and the national level. [ABSTRACT FROM AUTHOR]

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]

Background: Rates of overweight and obesity are disproportionately high among youth with serious emotional disturbance (SED). Little is known about community mental health providers' delivery of weight loss interventions to this vulnerable population. Objective: This study examined attitudinal predictors of their providers' intentions to deliver weight loss interventions to youth with SED using the theory of planned behaviour. Design: This study used a cross‐sectional, single‐time‐point design to examine the relationship of the theory of planned behaviour constructs with behavioural intention. Setting and Participants: Community mental health providers (n = 101) serving youth with SED in the United States completed online clinical practice and theory of planned behaviour surveys. Main Variables Studied: We examined the relationship of direct attitude constructs (i.e., attitude towards the behaviour, social norms and perceived behavioural control), role beliefs and moral norms with behavioural intention. Analyses included a confirmatory factor analysis and two‐step linear regression. Results: The structure of the model and the reliability of the questionnaire were supported. Direct attitude constructs, role beliefs and moral norms predicted behavioural intention to deliver weight loss interventions. Discussion: While there is debate about the usefulness of the theory of planned behaviour, our results showed that traditional and newer attitudinal constructs appear to influence provider intentions to deliver weight loss interventions to youth with SED. Findings suggest preliminary strategies to increase provider intentions. Public Contribution: This study was designed and the results were interpreted as part of a larger, community‐based participatory research effort that included input from youth, families, providers, administrators and researchers. Collaborative discussions with community mental health providers and administrators particularly contributed to the study question asked as well as interpretation of results. [ABSTRACT FROM AUTHOR]

The article presents a qualitative analysis of the experiences of parents of health visiting outside the home and of children's centres services. It also examines the usefulness of relational autonomy in the understanding of the mechanisms of the family support. It suggests that health visiting outside the home and children's centres services can foster parental autonomy, particularly in relational terms.

Introduction: Regular reviews of medications, including prescription reviews and adherence reviews, are vital to support pharmacological effectiveness and optimize health outcomes for patients. Despite being more likely to report a long‐term illness that requires medication when compared to their white counterparts, individuals from ethnic minority communities are less likely to engage with regular medication reviews, with inequalities negatively affecting their access. It is important to understand what barriers may exist that impact the access of those from ethnic minority communities and to identify measures that may act to facilitate improved service accessibility for these groups. Methods: Semi‐structured interviews were conducted between June and August 2021 using the following formats as permitted by governmental COVID‐19 restrictions: in person, over the telephone or via video call. Perspectives on service accessibility and any associated barriers and facilitators were discussed. Interviews were audio‐recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the Health Research Authority (ref: 21/HRA/1426). Results: In total 20 participants from ethnic minority communities were interviewed; these participants included 16 UK citizens, 2 refugees and 2 asylum seekers, and represented a total of 5 different ethnic groups. Three themes were developed from the data regarding the perceived barriers and facilitators affecting access to medication reviews and identified approaches to improve the accessibility of such services for ethnic minority patients. These centred on (1) building knowledge and understanding about medication reviews; (2) delivering medication review services; and (3) appreciating the lived experience of patients. Conclusion: The results of this study have important implications for addressing inequalities that affect ethnic minority communities. Involving patients and practitioners to work collaboratively in coproduction approaches could enable better design, implementation and delivery of accessible medication review services that are culturally competent. Patient or Public Contribution: The National Institute for Health Research Applied Research Collaboration and Patient and Public Involvement and Engagement group at Newcastle University supported the study design and conceptualization. Seven patient champions inputted to ensure that the research was conducted, and the findings were reported, with cultural sensitivity. [ABSTRACT FROM AUTHOR]

Context: Kidney transplant is superior to dialysis for the treatment of end‐stage kidney disease, but accessing transplant requires high patient engagement to overcome barriers. We sought to develop an educational counselling intervention for patients along with their social support networks to help patients access the waiting list. Methods: Utilizing an Intervention Mapping approach, we established a conceptual framework to develop a behavioural intervention that can be reproduced across kidney transplant centres. The approach includes needs assessment, identifying behavioural determinants and process objectives and integrating targeted behavioural change theory. Results: The Intervention Mapping process resulted in the development of a group counselling session, titled Journey to Transplant (JtT). This intervention was designed for kidney transplant candidates along with members of their social support networks and guided by a transplant healthcare professional. The session begins with standardized educational information to improve knowledge and normalize emotional barriers to transplant. This education is followed by a tailored counselling intervention, including the presentation of the individual patient's calculated likely outcomes on the kidney transplant waiting list. Finally, JtT incorporates patient and support network goal setting to address the specific barriers for that patient in accessing kidney transplantation. Conclusion: A systematic Intervention Mapping approach to develop the JtT intervention helps ensure the intervention is efficacious, acceptable and feasible for transplant centres to implement. JtT engages the patient's social support network, targeting known barriers to transplant and utilizing established behaviour change theory to motivate concrete actions to improve the likelihood of kidney transplantation. Patient or Public Contribution: This study includes a patient and family advisory committee comprised of kidney transplant candidates and their family members to guide the final language and content of the intervention guide, and the conduct of the implementation and pilot testing of the intervention. However, patients and family members were not involved in the intervention mapping development process itself described in this manuscript, which was informed by focus group data from patient and family study participants. [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 article compares the health care system of Great Britain and the U.S. It is based on a series of three British-American medical sociology conferences, the most recent of which was convened in Boston, Massachusetts. It is stated that for most Americans, health care is procured through employer-sponsored group insurance plans. Whereas, in Great Britain medical is governed by the National Health Service (NHS).

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]

Abstract: Background: Neuropathic pain (NP) is a complex, chronic pain state initiated by a primary lesion or dysfunction of the nervous system and presents as a variety of symptoms across multiple disease states. Objective: To develop a patient‐centred conceptual model of symptoms and impacts in subjects with diabetic peripheral neuropathy (DPN) or post‐herpetic neuralgia (PHN) that can inform the measurement strategy in clinical trials. Method: Thirty subjects with DPN or PHN participated in in‐person interviews which were performed until saturation was achieved. Transcripts were analysed in ATLAS.ti. Results: Interviews were completed with DPN subjects (United States, n = 10; Japan, n = 10) and PHN subjects (United States, n = 5; Japan, n = 5). Numbness and tingling were frequently reported symptoms in the DPN population while itchiness and hypersensitivity were predominant in PHN. Both populations experienced burning and ache/soreness with similar frequency. DPN subjects experienced pain primarily in their lower extremity (eg feet, ankles), while PHN subjects experienced pain primarily in the chest and back. Impacts reported by DPN subjects included difficulty walking, sleep disturbance and climbing stairs. Impacts in PHN subjects included sleep disturbance, avoidance of physical contact, being angry/frustrated and being sad/depressed. Overall, concepts in Japan were not qualitatively different from the United States. Conceptual models of NP were generated based on the concepts elicited. Conclusions: This research highlights core concepts to measure from the patient's perspective. Moreover, it enables the assessment of existing measures, the possible modification of these measures, or if a new NP measure with improved sensitivity and responsiveness is merited. [ABSTRACT FROM AUTHOR]

Background Patient-centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient-centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient-centred care, conceptualize what they are implementing. Objective To examine how hospital employees conceptualize patient-centred care. Research Design We conducted qualitative interviews about patient-centred care during site four visits, from January to April 2013. Subjects We interviewed 107 employees, including leadership, middle managers, front line providers and staff at four US Veteran Health Administration ( VHA) medical centres leading VHA's patient-centred care transformation. Measures Data were analysed using grounded thematic analysis. Findings were then mapped to established patient-centred care constructs identified in the literature: taking a biopsychosocial perspective; viewing the patient-as-person; sharing power and responsibility; establishing a therapeutic alliance; and viewing the doctor-as-person. Results We identified three distinct conceptualizations: (i) those that were well aligned with established patient-centred care constructs surrounding the clinical encounter; (ii) others that extended conceptualizations of patient-centred care into the organizational culture, encompassing the entire patient-experience; and (iii) still others that were poorly aligned with patient-centred care constructs, reflecting more traditional patient care practices. Conclusions Patient-centred care ideals have permeated into healthcare systems. Additionally, patient-centred care has been expanded to encompass a cultural shift in care delivery, beginning with patients' experiences entering a facility. However, some healthcare employees, namely leadership, see patient-centred care so broadly, it encompasses on-going hospital initiatives, while others consider patient-centred care as inherent to specific positions. These latter conceptualizations risk undermining patient-centred care implementation by limiting transformational initiatives to specific providers or simply repackaging existing programmes. [ABSTRACT FROM AUTHOR]

The article presents the study on the perspectives of advocates and leaders on children's mental health policies in the U.S. The analysis of data from the national survey was designed to understand the groups' perspective in various theme such as empowerment of youth and family in policy and practice, financial support, and challenges on health policy improvement. Results were outlined and conclude the lack of awareness and information among policymakers and advocates in filling their roles.

Background: In the search for more straightforward ways of summarizing patient experiences and satisfaction, there is growing interest in the Net Promoter Score (NPS): How likely is it that you would recommend our company to a friend or colleague? Objective: To assess what the NPS adds to patient experience surveys. The NPS was tested against three other constructs already used in current surveys to summarize patient experiences and satisfaction: global ratings, recommendation questions and overall scores calculated from patient experiences. To establish whether the NPS is a valid measure for summarizing patient experiences, its association with these experiences should be assessed. Methods: Associations between the NPS and the three other constructs were assessed and their distributions were compared. Also, the association between the NPS and patient experiences was assessed. Data were used from patient surveys of inpatient hospital care (N = 6018) and outpatient hospital care (N = 10 902) in six Dutch hospitals. Results: Analyses showed that the NPS was moderately to strongly correlated with the other three constructs. However, their distributions proved distinctly different. Furthermore, the patient experiences from the surveys showed weaker associations with the NPS than with the global rating and the overall score. Conclusions: Because of the limited extent to which the NPS reflects the survey results, it seems less valid as a summary of patient experiences than a global rating, the existing recommendation question or an overall score calculated from patient experiences. In short, it is still unclear what the NPS specifically adds to patient experience surveys. [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]

Aim Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient-centred care using patient perception survey data. Background Patient-centred care is one of the Institute of Medicine's objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/ Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient-centered. Method The present study used survey data from patients with overnight visits at 142 U. S. hospitals. Results Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well. Conclusion Understanding how patients experience their care can help improve understanding of what patients believe is patient-centred, and of how care processes relate to important patient outcomes. [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]

Context The right to health requires States to achieve the highest standard of health attainable for all. A culturally sensitive approach is needed to respect States' interpretation and implementation of the universal right to health, and document their progress. Objective This viewpoint suggests how to harmonize the (i) human right to health and (ii) the particularism of State values and interests. Strategy I describe the 'thickness' with which individual States recognize the right to health, as a dimension of universality, and then implement that recognition, as a dimension of particularism. Recognition and implementation by States need to be thick to demonstrate 'glocal' rationality, as characterizes the right to health as a Webberian ideal type. Examples of variation in the thickness of States' interpretation and implementation of the right to health are discussed. Conclusion It is possible to work towards harmonizing the right to health, and State particularism, by maximizing the thickness with which individual States recognize this right and progressively implement it. [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]

Objectives To show how providing cameras to patients and community residents can be effective at involving the public in generating understanding of consumer, community, and health system problems and strengths. Background Health-care institutions and systems may seek to include consumer perspectives on health and health care yet be challenged to involve the most vulnerable sectors, be they persons with disabilities or persons with low socio-economic status living in societies where a top-down approach to policy is the norm. Methods Drawing on study examples using photo-elicitation and photovoice in Morocco and the United States, the authors explore issues of planning, data analysis, ethical concerns and action related to using participatory visual methods in different cultural and political contexts. Results Visual data generated by consumers can be surprising and can identify health system problems and strengths omitted from data gathered using other means. Statistical data may convince policy makers of the need to address a problem. Participant visual data may in turn encourage policy maker attention and action. Conclusion Health system decision making may be improved by having a broader range of data available. Participant-generated visual data may support data gathered using traditional methods, or provide a reality check when compared with data generated by organizations, researchers and policy makers. The two study examples model innovative ways to surface health and health-care issues as they relate to consumers’ real lives and engage vulnerable groups in systems change, even in contexts where expressing opinions might be seen as a risky thing to do. [ABSTRACT FROM AUTHOR]

Objective To explore laypersons’ understanding of individualized cancer risk estimates, and to identify conceptual problems that may limit this understanding. Background Risk prediction models are increasingly used to provide people with information about their individual risk of cancer and other diseases. However, laypersons may have difficulty understanding individualized risk information, because of conceptual as well as computational problems. Design A qualitative study was conducted using focus groups. Semi-structured interviews explored participants’ understandings of the concept of risk, and their interpretations of a hypothetical individualized colorectal cancer risk estimate. Setting and participants Eight focus groups were conducted with 48 adults aged 50–74 years residing in two major US metropolitan areas. Participants had high school or greater education, some familiarity with information technology, and no personal or family history of cancer. Results Several important conceptual problems were identified. Most participants thought of risk not as a neutral statistical concept, but as signifying danger and emotional threat, and viewed cancer risk in terms of concrete risk factors rather than mathematical probabilities. Participants had difficulty acknowledging uncertainty implicit to the concept of risk, and judging the numerical significance of individualized risk estimates. The most challenging conceptual problems related to conflict between subjective and objective understandings of risk, and difficulties translating aggregate-level objective risk estimates to the individual level. Conclusions Several conceptual problems limit laypersons’ understanding of individualized cancer risk information. These problems have implications for future research on health numeracy, and for the application of risk prediction models in clinical and public health settings. [ABSTRACT FROM AUTHOR]

Background Several states within the United States offer low-income adults with disabilities a choice of health plans. No states issue comparative ‘report cards’ specifically for adults with disabilities. Objective To explore conceptualizations of quality, information needs, and report card preferences from the perspective of people with disabilities. Research design Eight focus group interviews were conducted in 2003. Existing report cards for California, Maryland, Michigan and Texas were shared for feedback. Subjects 34 women and 15 men with various behavioural, physical or sensory disabilities in Oregon, California, Virginia, Maryland and the District of Columbia. Results Quality was mostly defined in terms of choice and disability sensitivity of service providers. Respondents identified various obstacles to receiving appropriate health plan and service information. All beneficiaries were keenly interested in the comparative health plan report cards, but did not think the report cards provided enough pertinent information, especially with regard to provider ratings, accessibility, disability competence and reasons for participating in the Medicaid program. Conclusions Existing comparative report cards omit several major content domains important to people with disabilities. Organizations providing decision support to people with disabilities should cultivate novel avenues for distribution, such as food banks, libraries and places of worship. [ABSTRACT FROM AUTHOR]

Objectives The role of reassurance in decision-making about screening for health problems is largely unknown. We examined the reassurance value of prostate cancer screening in primary care patients. Setting and participants One hundred and sixty eight men, aged 45–70 years, who had no history of prostate cancer, from three family medicine practices in southeast Texas. Methods A hypothetical scenario was developed where men were asked to assume they did not have prostate cancer, and then to rank three predefined screening states with regard to reassurance value: (A) unknown (no screening), (B) normal by screening [a prostate-specific antigen (PSA) test and a digital rectal examination (DRE)] and (C) normal by biopsy (abnormal PSA test and DRE results but a negative ultrasound-guided prostate biopsy). Results Most of the men (96.8%) associated some reassurance value with screening, considering health state A to be the worst possible health state. Results from a multivariate analysis showed that preference for screening state C was associated with a family history of prostate cancer and perceived greater risk for prostate cancer compared with other men. Conclusion These findings suggest that prostate cancer screening may have some reassurance value for men, and that increased risk status may explain why some men prefer the added reassurance afforded by screening. [ABSTRACT FROM AUTHOR]

Whilst there is no consensus amongst analysts regarding how best to define ‘patient empowerment’, at the very least, this concept entails a re-distribution of power between patients and physicians. Empowered patients attempt to take charge of their own health and their interactions with health care professionals. Empowerment can occur at different levels (micro, meso, and macro) and patients have different ideas about what it means to ‘take charge’ and ‘be empowered’. Some patients simply want to be given information about their conditions whilst others want to have full control over all medical decision-making. Some empirical evidence suggests that active patient participation in health care is associated with better patient outcomes. This field is ripe for future studies which both help to develop theoretical models of patient empowerment and articulate the conditions under which patient empowerment occurs. [ABSTRACT FROM AUTHOR]