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Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]

Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Objectives: The global coronavirus disease 2019 (COVID‐19) pandemic has not been well controlled, and vaccination could be an effective way to prevent this pandemic. By accommodating attribute nonattendance (ANA) in a discrete choice experiment (DCE), this paper aimed to examine Chinese public preferences and willingness to pay (WTP) for COVID‐19 vaccine attributes, especially the influence of ANA on the estimated results. Methods: A DCE was designed with four attributes: effectiveness, protection period, adverse reactions and price. A random parameter logit model with an error component (RPL‐EC) was used to analyse the heterogeneity of respondents' preferences for COVID‐19 vaccine attributes. Two equality constraint latent class (ECLC) models were used to consider the influence of ANA on the estimated results in which the ECLC‐homogeneity model considered only ANA and the ECLC‐heterogeneity model considered both ANA and preference heterogeneity. Results: Data from 1,576 samples were included in the analyses. Effectiveness had the highest relative importance, followed by adverse reactions and protection period, which were determined by the attributes and levels presented in this study. The ECLC‐heterogeneity model improved the goodness of fit of the model and obtained a lower probability of ANA. In the ECLC‐heterogeneity model, only a small number of respondents (29.09%) considered all attributes, and price was the most easily ignored attribute (64.23%). Compared with the RPL‐EC model, the ECLC‐homogeneity model obtained lower WTPs for COVID‐19 vaccine attributes, and the ECLC‐heterogeneity model obtained mixed WTP results. In the ECLC‐heterogeneity model, preference group 1 obtained higher WTPs, and preference groups 2 and 3 obtained lower WTPs. Conclusions: The RPL‐EC, ECLC‐homogeneity and ECLC‐heterogeneity models obtained inconsistent WTPs for COVID‐19 vaccine attributes. The study found that the results of the ECLC‐heterogeneity model considering both ANA and preference heterogeneity may be more plausible because ANA and low preference may be confused in the ECLC‐homogeneity model and the RPL‐EC model. The results showed that the probability of ANA was still high in the ECLC‐heterogeneity model, although it was lower than that in the ECLC‐homogeneity model. Therefore, in future research on DCE (such as the field of vaccines), ANA should be considered as an essential issue. Public Contribution: Chinese adults from 31 provinces in mainland China participated in the study. All participants completed the COVID‐19 vaccine choice questions generated through the DCE design. [ABSTRACT FROM AUTHOR]

Introduction: To increase the likelihood of research responding to societal needs, intermediary structures such as Science Shops are being created. Science Shops respond to research needs identified and prioritized through participatory processes involving civil society. However, these are not mainstream structures, and most research needs addressed by the scientific community are not defined by a diversity of stakeholders (including citizens) but are mostly prioritized by researchers and funders. Literature shows this often leads to bias between the research topics investigated and the research needs of other relevant stakeholders. This study analyses how 14 Science Shops contribute to decreasing bias in health research agenda setting. Methodology: We compare the research priorities identified through participatory processes by the Science Shops, which participated in the European Union‐funded project InSPIRES (2017–2021), to the available research addressed in the literature (identified in Web of Science), which we use as a proxy for current research priorities. Results: Science Shop projects contributed to decreasing the existing bias in health research agenda setting: (1) between drug and nondrug treatments and (2) between clinical trials of treatments for illnesses affecting high‐income versus middle‐ and low‐income countries, which leads to a lack of local strategies for high disease burdens in nonhigh‐income regions. Conclusion: This study provides the first evidence of Science Shops' effectiveness in addressing current biases in health research agenda setting. We conclude they could play a key role in shaping local, national and international research policies. [ABSTRACT FROM AUTHOR]

Background and context: Breastfeeding peer support is valued by women, but UK trials have not demonstrated efficacy. The ABA feasibility trial offered proactive peer support underpinned by behaviour change theory and an assets‐based approach to women having their first baby, regardless of feeding intention. This paper explores women's and infant feeding helpers' (IFHs) views of the different components of the ABA intervention. Setting and participants: Trained IFHs offered 50 women an antenatal meeting to discuss infant feeding and identify community assets in two English sites—one with a paid peer support service and the other volunteer‐led. Postnatally, daily contact was offered for the first 2 weeks, followed by less frequent contact until 5 months. Methods: Interviews with 21 women and focus groups/interviews with 13 IFHs were analysed using thematic and framework methods. Results: Five themes are reported highlighting that women talked positively about the antenatal meeting, mapping their network of support, receiving proactive contact from their IFH, keeping in touch using text messaging and access to local groups. The face‐to‐face antenatal visit facilitated regular text‐based communication both in pregnancy and in the early weeks after birth. Volunteer IFHs were supportive of and enthusiastic about the intervention, whereas some of the paid IFHs disliked some intervention components and struggled with the distances to travel to participants. Conclusions: This proactive community assets‐based approach with a woman‐centred focus was acceptable to women and IFHs and is a promising intervention warranting further research as to its effect on infant feeding outcomes. [ABSTRACT FROM AUTHOR]

Background: Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods: The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results: Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion: Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

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: Critical care bed capacity per capita in Ireland is among the lowest in Europe. The COVID‐19 pandemic has put additional strain on an over‐stretched healthcare system. COVID‐19 community assessment hubs (CAHs) were established to prevent unnecessary admission to acute hospitals and to reduce infection spread. Objective: The aim of this study was to assess the effectiveness and acceptability of CAHs and identify how the service might be improved or adapted for possible future use. Design: This was a mixed methods study, incorporating co‐design with clinical stakeholders. Data collection was via an online survey and semistructured telephone interviews with staff and patients conducted between January and May 2021. Setting and participants: Thirty‐one patients completed the survey and nine were interviewed. Twenty interviews were conducted with staff. Results: The findings suggest that the CAH model was successful in providing a dedicated pathway for assessing patients with COVID‐19 symptoms, whilst mitigating the risk of infection. Patients were particularly positive about the timely, comprehensive and holistic care they received, as well as the accessibility of the clinics and the friendly attitudes of the staff. Staff welcomed the training and clinical protocols which contributed to their feelings of safety and competency in delivering care to this cohort of patients. They also highlighted the benefits of working in a multidisciplinary environment. Both staff and patients felt that the hubs could be repurposed for alternative use, including the treatment of chronic diseases. Discussion: This study describes staff and patients' experiences of these hubs. An unexpected outcome of this study is its demonstration of the true value of effective multidisciplinary working, not only for the staff who were deployed to this service but also for the patients in receipt of care in these hubs. Conclusion: This multidisciplinary patient‐centred service may provide a useful model for the delivery of other services currently delivered in hospital settings. Patient or Public Contribution: An earlier phase of this study involved interviews with COVID‐19‐positive patients on a remote monitoring programme. The data informed this phase. Several of the authors had worked in the CAHs and provided valuable input into the design of the staff and patient interviews. [ABSTRACT FROM AUTHOR]

Background: Bowel cancer screening using faecal immunochemical testing is provided in the United Kingdom with the aim of reducing mortality from colorectal cancer. However, there are low participant rates among ethnic minorities across the United Kingdom. Faith‐placed interventions have the potential to improve screening rates among such populations, but studies examining their effectiveness are scarce. Methods: We delivered a presentation on bowel cancer screening to 204 Muslims in seven mosques in East London (intervention group). All participants completed a questionnaire regarding attitudes, perceptions and knowledge of bowel cancer screening before and after the presentation. Concurrently, we administered the questionnaire to 72 subjects attending a mosque that did not receive the presentation (comparison group). Results: The intervention group showed a greater willingness to do the test (90% vs. 67%, p < 0.001) and to recommend it to others (96% vs. 74%, p < 0.001), ability to complete the test by themselves (94% vs. 56%, p < 0.001) and confidence in noticing symptoms (78% vs. 32%, p < 0.001) after the presentation compared to before. There was a significant difference between the intervention group post‐presentation and the comparison group on intention to do the test (90% vs. 79%, p = 0.02), recommending it to others (96% vs. 83%, p < 0.001), and confidence in their ability to complete the test by themselves (94% vs. 63%, p < 0.001). Conclusion: A culture‐sensitive, faith‐placed health education intervention delivered in mosques can substantially improve knowledge of bowel cancer screening and increase the intention to participate in the screening programme. Patient or Public Contribution: The intervention presentation was developed using insights from four public involvement sessions with four to six members representative of the East London Muslim community. The sessions sought attendees' thoughts on appropriate ways to approach the intervention design for their community and asked for their views on the acceptability, appropriateness of messaging, format/design and likely impact of the presentation. Their views were then utilised to improve the presentation. [ABSTRACT FROM AUTHOR]

Introduction: Culturally and linguistically diverse population groups disproportionately experience higher weight and other non–weight‐related discrimination in healthcare settings outside of their ancestral country. Little is known about the experiences of individuals with Arab heritage. This study aimed to qualitatively explore the intersectional weight‐related healthcare experiences of individuals of Arab heritage with higher weight in Australia. Methods: A general inductive enquiry approach was used. Purposive, convenience and snowball sampling was used to recruit individuals of Arab heritage residing in Australia. Individuals were invited to participate in an online semistructured interview. Interviews were recorded, transcribed and thematically analysed. Results: Fifteen participants took part in the study. Of these participants, 93% were female (n = 14), 80% were aged between 18 and 44 years (n = 12), 73% were university educated (n = 11), 53% were born outside of Australia (n = 8) and all were Muslim (n = 15). Four main themes were identified: (1) appearance‐based judgement, (2) generalised advice and assumptions, (3) cultural responsiveness and (4) healthcare system constraints. Conclusion: Individuals of Arab heritage with higher weight in Australia, namely, females, often perceive their healthcare experiences as dismissive of their cultural and religious needs and driven by causality assumptions around weight. It is crucial that care delivered encompasses cultural humility, is weight‐inclusive and acknowledges systemic constraints. Cultural safety training benchmarks, healthcare management reform and weight‐inclusive healthcare approaches are recommended to assist healthcare providers in delivering effective, holistic and culturally safe care. Patient or Public Contribution: Insights gained from conversations with Arab heritage community members with lived experiences regarding weight‐related healthcare encounters informed the study design and approach. [ABSTRACT FROM AUTHOR]

Background: We assessed experiences of human papillomavirus (HPV) vaginal self‐sampling and future screening preferences in an ethnically and socio‐economically diverse group of women overdue for cervical screening. Setting and Participants: A postal questionnaire was embedded in the YouScreen self‐sampling trial in England: 32.5% (2712/8338) of kit completers returned the survey. Kit non‐completers were encouraged to return a questionnaire, but no responses were received. Participants were ethnically diverse (40.3% came from ethnic minority backgrounds), and 59.1% came from the two most deprived quintiles. Differences in confidence in kit completion, trust in the test results and intention to attend a follow‐up test if HPV‐positive were evaluated using Pearson's χ2 analyses. Binary logistic regression models explored predictors of a future screening choice and preferences for urine versus vaginal self‐sampling. Results: Most kit‐completers reported high confidence in self‐sampling (82.6%) and high trust in the results (79.9%), but experiences varied by ethnicity and screening status. Most free‐text comments were positive but some reported difficulties using the device, pain or discomfort. Most women would opt for self‐sampling in the future (71.3% vs. 10.4% for a clinician‐taken test) and it was more often preferred by ethnic minority groups, overdue screeners and never attenders. Urine self‐tests were preferred to vaginal tests (41.9% vs. 15.4%), especially among women from Asian, Black or Other Ethnic backgrounds. Conclusions: Kit‐completers were confident, found the test easy to complete, and trusted the self‐sample results. However, experiences varied by ethnic group and some women highlighted difficulties with the kit. Most women would prefer self‐sampling in the future, but it was not a universal preference, so offering a choice will be important. Patient or Public Contribution: We did not have direct patient and public involvement and engagement (PPIE) in the questionnaire design. However, patients and public representatives did input into the design of the YouScreen trial and reviewed the wider study materials (e.g. participant information sheet). Trial Registration: This questionnaire study was embedded in the YouScreen trial. The protocol for the YouScreen trial is available at https://www.isrctn.com/ISRCTN12759467. The National Institute for Health Research 43 Clinical Research Network (NIHR CRN) Central Portfolio Management System (CPMS) ID is 4441934. [ABSTRACT FROM AUTHOR]

Abstract: Background: Patients are increasingly offered electronic access to their doctors' notes, and many consistently receive paper After‐Visit Summaries. Specific feedback from patients about notes and summaries are lacking, particularly within safety‐net settings. Design: A mixed methods study Setting and Participants: Patients with poorly controlled diabetes attending two urban safety‐net primary care clinics in Washington State. Methods: Patients read their own most recent clinic note and After‐Visit Summary, then completed a brief survey followed by a focus group discussion (3 groups in a large general medicine teaching clinic and 1 in an HIV/AIDS clinic) about their perceptions of the clinic note and After‐Visit Summary. Results: Twenty‐seven patients participated; 70% were male, 41% were Black, 48% were unemployed or disabled, 56% reported fair/poor health, and 37% had accessed the electronic patient portal. A majority of patients felt their note content was useful (89%); a minority reported that their notes were not accurate (19%), had too much medical jargon (29%), or were too long (26%). Themes identified from the discussions included reliance on the provider to explain confusing content; a desire for more rather than less detail; and perceived inaccuracies, particularly in heavily templated notes. In each focus group, one or more portal users were enthusiastically willing to teach other patients. Conclusions: The majority of focus group participants at this safety‐net site had not accessed the electronic patient portal, but those who had were willing to promote the portal benefits and assist others. Patients identified specific opportunities to improve clinic notes and After‐Visit Summaries. [ABSTRACT FROM AUTHOR]

Introduction: The mental health of young people (aged 16–25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under‐representation' in young people's involvement in mental health research. Methods: Twenty‐seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under‐representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. Results: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed‐upon definition of under‐representation, an identification of when in the research process there is under‐representation and the characteristics of the young people who are under‐represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. Conclusions: This study adds to our understanding of involvement and under‐representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. Patient and Public Contribution: A research oversight group of five young people advised on this study. They contributed throughout the project—from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire. [ABSTRACT FROM AUTHOR]

Background: Young people (YP) with long‐term conditions (LTCs) are at greater risk of psychological distress than those without LTCs. Despite this, there is a scarcity of quality digital interventions designed to help improve mental wellbeing in this population. The aim of this study was to determine what YP, parents and health professionals preferred for future interventions. Methods: Twenty‐six YP with asthma, diabetes and/or epilepsy (the three most common LTCs in YP), 23 parents of YP with LTCs and 10 health professionals mainly in paediatric specialisms (total n = 59) took part in an online Delphi study to gain consensus (set at 75% agreement) on four questions across three rounds. Participants ordered psychological themes that may be experienced by YP with LTCs by importance and ranked digital intervention types and delivery modes by importance or usefulness. The most common results were reported if no consensus was reached by round 3. Results: Participants preferred a mobile phone app (73% agreement) and a mixture of one‐on‐one and group support for an intervention (75% agreement). The two highest ranked psychological themes were anxiety (44%) and wanting to appear 'normal' (38%), and the top intervention type was 'general counselling' (54% agreement). Conclusion: There was a clear desire for an app to help with the psychological aspects of living with LTCs and for a combination of one‐to‐one and group intervention elements. Anxiety and wanting to appear 'normal' might be two closely linked psychological challenges that could be addressed by a single intervention. Implications: The results will be important to consider for a future intervention, although further consultation will be needed for app development. Patient or Public Contribution: Two YP with a LTC provided feedback on the study protocol including the aims and procedures of the project. Another six YP with LTCs were consulted on an early draft of the study questionnaire (the four questions), which was subsequently revised. Once the project began, a patient and public involvement group consisting of two YP with LTCs and one parent of a YP with an LTC gave feedback on the research process, lay report of the results and dissemination plan. [ABSTRACT FROM AUTHOR]

Introduction: Problem‐solving skills (PSS) help to provide a systematic approach to dealing with and managing complex problems. The overall aim of this study was to assess the acceptability and feasibility of developing and adapting a prison‐based PSS workbook for adults within a medium‐ and low‐secure hospital. Method: We used the Medical Research Council framework in our participatory mixed methods study incorporating an adapted survey (to identify what types of problems people experience in secure hospitals), a series of three interactive workshops (to co‐produce two case study examples for a workbook) and we gathered feedback from patients and hospital staff on the acceptability and feasibility of the workbook. Data from the survey were used to inform the case study examples, and the feedback from patients and hospital staff was descriptively summarised and the results consolidated. Results: In total, 82 (51%) patients took part in the survey; 22 patients and 49 hospital staff provided feedback on the workbook. The survey results indicated that patients regularly experience problems while in the hospital. Patients reported problems relating to restrictions of freedom and boredom. The workshops produced two case studies for the workbooks, with mainly positive patient and staff feedback. More work is required to improve the visual representation of the characters in the case studies, the amount and content of the language and the mechanism of the intervention delivery. Conclusion: The adaptation process proved acceptable and feasible to both patients and staff. The co‐production methodology for the workbook and feedback from patients and staff was an effective way of iteratively refining the materials to ensure that they were both meaningful and acceptable to staff and patients. Subsequent work is required to develop the workbook and evaluate the feasibility of the intervention delivery, recruitment rates, uptake and adherence to the PSS using a randomised controlled trial. Patient or Public Contribution: At each stage of the project consultation with patients and/or hospital staff was involved. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one‐time honorarium, salary) and amount. Further, broad‐based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. Methods: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self‐identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open‐text comments in addition to menu‐based and scaled response options. Basic frequencies were performed for all questions and open‐text comments were analyzed through inductive qualitative content analysis. Results: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open‐text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. Conclusions: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. Patient Contribution: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co‐authors of this manuscript. The survey was co‐designed and pilot tested with patient partners and survey participants were patient partners. [ABSTRACT FROM AUTHOR]

Background and Context: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion: Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Many individuals worldwide continue to take benzodiazepine receptor agonists (BZRAs) long term (≥3 months). The aim of this study was to conduct a content analysis of the views and experiences of discontinuing long‐term BZRA use as documented in the free‐text responses of respondents to an online questionnaire examining mediators of behaviour change relating to the discontinuation of long‐term BZRA use. Design: The questionnaire was disseminated via online BZRA support groups to community‐based adults with either current or previous experience of long‐term BZRA use. The four free‐text questions focused on (1) barriers and (2) facilitators to discontinuing BZRA use; (3) additional supports required to discontinue BZRA use; and (4) additional comments regarding BZRA use. Response data were analysed using summative content analysis. Results: The most commonly reported barrier to BZRA discontinuation related to the consequences of stopping the medication, including withdrawal symptoms and the possibility of return of the original symptoms. The most common facilitator that respondents reported would help them in discontinuing BZRA use was support, primarily from medical professionals. Many respondents reported having been harmed or negatively affected in some way because of BZRA use. Several respondents expressed regret over ever taking BZRAs and/or reported that, with the benefit of hindsight, they should never have taken BZRAs in the first instance. Conclusion: The findings highlight the range of barriers faced by those attempting BZRA discontinuation and the importance of additional supports. Holistic and person‐centred approaches are needed to support discontinuation of long‐term BZRA use that considers an individual's personal circumstances and wider social context. Patient or Public Contribution: 'Experts by experience' with previous experience of long‐term BZRA use were involved in developing the questionnaire and writing the manuscript as collaborators. Individuals with lived experience of taking BZRAs completed the questionnaire. [ABSTRACT FROM AUTHOR]

Background: Evidence shows that online interventions could prevent depression. However, to improve the effectiveness of preventive online interventions in individuals with subthreshold depression, it is worthwhile to study factors influencing intervention outcomes. Outcome expectancy has been shown to predict treatment outcomes in psychotherapy for depression. However, little is known about whether this also applies to depression prevention. The aim of this study was to investigate the role of participants' outcome expectancy in an online depression prevention intervention. Methods: A secondary data analysis was conducted using data from two randomised‐controlled trials (N = 304). Multilevel modelling was used to explore the effect of outcome expectancy on depressive symptoms and close‐to‐symptom‐free status postintervention (6–7 weeks) and at follow‐up (3–6 months). In a subsample (n = 102), Cox regression was applied to assess the effect on depression onset within 12 months. Explorative analyses included baseline characteristics as possible moderators. Outcome expectancy did not predict posttreatment outcomes or the onset of depression. Results: Small effects were observed at follow‐up for depressive symptoms (β = −.39, 95% confidence interval [CI]: [−0.75, −0.03], p =.032, padjusted =.130) and close‐to‐symptom‐free status (relative risk = 1.06, 95% CI: [1.01, 1.11], p =.013, padjusted = 0.064), but statistical significance was not maintained when controlling for multiple testing. Moderator analyses indicated that expectancy could be more influential for females and individuals with higher initial symptom severity. Conclusion: More thoroughly designed, predictive studies targeting outcome expectancy are necessary to assess the full impact of the construct for effective depression prevention. Patient or Public Contribution: This secondary analysis did not involve patients, service users, care‐givers, people with lived experience or members of the public. However, the findings incorporate the expectations of participants using the preventive online intervention, and these exploratory findings may inform the future involvement of participants in the design of indicated depression prevention interventions for adults. Clinical Trial Registration: Original studies: DRKS00004709, DRKS00005973; secondary analysis: osf.io/9xj6a. [ABSTRACT FROM AUTHOR]

Background: Persistent somatic symptoms (PSS) frequently remain under‐treated in health care settings. Evidence‐based services that lead affected individuals to early guideline‐based care are currently missing. This study aimed to identify the needs of those affected concerning an internet‐based guide. The second aim was to evaluate public and patient involvement (PPI). Methods: Participants experiencing PSS for at least 6 months were recruited via hospitals, psychotherapeutic practices and self‐help organizations. Qualitative data were gathered via ideation discussions and prioritization tasks. Thematic analysis was conducted to gain insight on the needs of people with lived experiences. PPI was quantitatively evaluated with the Public and Patient Engagement Evaluation Tool. Results: A total of 12 individuals participated (eight females, ages 22–66 years, duration of symptoms 1–43 years). Participants wanted to feel more supported, validated, in control and engaged with managing their health. Content‐related preferences included education, self‐help, social support and contact addresses. The majority of participants (>90%) experienced their involvement as worthwhile. Conclusions: To the best of our knowledge, this is one of the first studies describing PPI in intervention development for PSS. The involvement was perceived as a valuable contribution to the development process. Patient or Public Contribution: Adults with lived experiences were involved at the level of collaboration through the establishment of a participatory research team (PRT) and at the level of consultation through a workshop series, including one of the coauthors. They were involved in developing and validating intervention material and checking data interpretation. [ABSTRACT FROM AUTHOR]

Background: Health literacy is essential in the promotion of healthy lifestyle habits and chronic disease prevention. Objective: To assess the health literacy level among Hong Kong adolescents; to evaluate the association between access of an online health information platform (GoSmart Channel) and health literacy level; and to examine the association between health literacy level and various unhealthy behaviours. Design: This study recruited students from 10 local secondary schools in Hong Kong to assess the health literacy level among adolescents. Settings and Participants: Participants were required to complete a self‐administered questionnaire on health behaviours and health literacy using the Health Literacy Measure for Adolescents (HELMA). Main Outcome Measure: Data were analysed using descriptive statistics and multivariate regression modelling. Results: A total of 777 responses were collected. Overall, most (74.4%) of the adolescents in Hong Kong have limited health literacy (HELMA score <66). The majority (63.7%) of adolescents relied on their parents for health information, while 11.4% of the respondents sought information from the GoSmart Channel. The intervention of GoSmart Channel was significantly associated with better health literacy in almost all aspects among adolescents. Desired levels of health literacy were significantly associated with better perceived health (adjusted odds ratio: 2.04, p =.001) and negatively associated with a range of unhealthy and risky behaviours including unhealthy dietary habits, poor hygienic measures and physical inactivity. Discussion and Conclusion: This study highlights the importance of improving health literacy among Hong Kong adolescents and the potential of technology‐based interventions. The findings suggest the need for continued efforts to promote health literacy and healthy behaviours among adolescents, especially given the limited health literacy levels observed in the study. Patient or Public Contribution: Members of the GoSmart.Net Built‐on Project patient and public involvement and engagement group advised about survey development. [ABSTRACT FROM AUTHOR]

Background: Poor quality sleep in hospitals may be problematic for patients, negatively impacting their recovery and wellbeing. This project aimed to investigate the effectiveness of codesign in addressing key issues affecting sleep disruption in the healthcare setting. Methods: Codesign with patients, staff and consumer representatives was conducted in an acute metropolitan tertiary public hospital in Sydney, Australia. Through a four‐stage process, a multimodal intervention to address and reduce the impact of sleep disruptions among hospital inpatients was created. Pre‐ and post‐intervention evaluation was used to determine changes in patient‐reported sleep disruption. Results: 'The HUSH Project' (Help Us Support Healing) intervention resulted from the codesign process, which included the provision of HUSH Sleep Packs (with earplugs, eye masks and herbal tea), patient information resources, and ward‐based Sleep Champions. Survey data from 210 patients revealed a statistically significant decrease in patient‐reported noise disturbances for patients in shared rooms following the 4‐week intervention period of the HUSH program. Conclusion: The HUSH Project demonstrated that a novel multimodal intervention may be valuable in reducing sleep disruption in hospitals. These findings also indicate the benefits of using codesign methodology to support improvement projects that seek to enhance patient experiences of care. Patient or Public Contribution: This project utilised codesign methodology, which involved significant contributions from patients and consumer representatives, from research conceptualisation into intervention design, implementation and project evaluation. [ABSTRACT FROM AUTHOR]

Background and Objective: To improve quality, child and adolescent mental health services (CAMHS) are expected to quantify families' views on healthcare with user satisfaction measures. As little is known about what influences satisfaction in CAMHS, this study aimed to examine predictors of adolescents' and parents' user satisfaction. Methods: Data from 231 adolescents and 495 parents in treatment at an outpatient clinic who returned a user satisfaction measure, the Experience of Service Questionnaire (ESQ), was analyzed. Registry data on background, clinical and service characteristics were predictors for the ESQ factors general satisfaction, satisfaction with care and satisfaction with environment. Results: In regression models, satisfaction with care for adolescents (r2 =.12) was significant and was predicted by low parent‐self‐reported mental health burden and low clinician‐rated overall symptom burden at intake. For parents, regression models for general satisfaction (r2 =.07), satisfaction with care (r2 =.06) and satisfaction with environment (r2 =.08) were significant. Parents general satisfaction was predicted by higher levels of hyperactivity, less family stress and longer travelling distances to the service. Satisfaction with care for parents was predicted by higher levels of hyperactivity at intake and longer travelling distances. Satisfaction with environment for parents was more likely if the adolescents was a boy, with low levels of family stress and longer travelling distances. Conclusion: Predictors for adolescent and parent user satisfaction in CAMHS differ. Hence, to improve quality CAMHS should enhance focus on collaborative practice with parents, and person‐centred care for adolescents with moderate to severe mental health illness. Patient or Public Contribution: Representatives from the hospitals' youth panel and the non‐governmental organization called The Change Factory have been consulted regarding study design and results. [ABSTRACT FROM AUTHOR]

Introduction: Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co‐build an interactive, hands‐on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co‐building the training programme. Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3‐month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi‐structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results: The Working Group co‐built and co‐delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together‐communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co‐build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co‐build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co‐learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co‐building more PRP‐centred learning programmes and tools going forward. [ABSTRACT FROM AUTHOR]

Background: Patients' treatment decisions may be influenced by the ways in which treatment options are presented. There is little evidence on how patients with advanced cancer choose preferences for advance directives (ADs) in China. Informed by behavioural economics, we assess whether end‐of‐life (EOL) cancer patients held deep‐seated preferences for their health care and whether default options and order effects influenced their decision‐making. Methods: We collected data on 179 advanced cancer patients who were randomly assigned to complete one of the four types of ADs: comfort‐oriented care (CC) AD (comfort default AD); a life extension (LE)‐oriented care option (LE default AD); CC (standard CC AD) and LE‐oriented (standard LE AD). Analysis of variance test was used. Results: In terms of the general goal of care, 32.6% of patients in the comfort default AD group retained the comfort‐oriented choice, twice as many as in the standard CC group without default options. Order effect was significant in only two individual‐specific palliative care choices. Most patients (65.9%) appointed their children to make EOL care decisions, but patients choosing the CC goal were twice as likely to ask their family members to adhere to their choices than patients who chose the LE goal. Conclusion: Patients with advanced cancer did not hold deep‐seated preferences for EOL care. Default options shaped decisions between CC and LE‐oriented care. Order effect only shaped decisions in some specific treatment targets. The structure of ADs matters and influence different treatment outcomes, including the role of palliative care. Patient or Public Contribution: Between August and November 2018, from 640 cancer hospital medical records fitting the selection criteria at a 3A level hospital in Shandong Province, we randomly selected 188 terminal EOL advanced cancer patients using a random generator programme to ensure all eligible patients had an equal chance of selection. Each respondent completes one of the four AD surveys. While respondents might require support in making their healthcare choices, they were informed about the purpose of our research study, and that their survey choices would not affect their actual treatment plan. Patients who did not agree to participate were not surveyed. [ABSTRACT FROM AUTHOR]

Background: Douyin APP is the short video APP with the largest number of users in China. Objective: This study aimed to evaluate the quality and reliability of short videos about cosmetic surgery on Douyin. Methods: In August 2022, we retrieved and screened 300 short videos related to cosmetic surgery from Douyin, extracted basic video information, encoded the content and identified the video source. The quality and reliability of short video information were evaluated using the DISCERN instrument. Results: A total of 168 short videos of cosmetic surgery were included in the survey, and the video sources included personal accounts and institutional accounts. Overall, the total proportion of institutional accounts (47/168, 27.98%) is significantly less than that of personal accounts (121/168, 72.02%); nonhealth professionals received the most praises, comments and even collections and reposts, while for‐profit academic organizations or institutions received the least. The DISCERN scores of 168 short videos of cosmetic surgery were 3.74–4.58 (average 4.22). Content reliability (p =.04) and overall short video quality (p =.02) are significantly different, but short videos published from different sources have no significant difference in treatment selection (p =.052). Conclusion: The overall information quality and reliability of short videos about cosmetic surgery on Douyin are satisfactory in China. Patient or Public Contribution: The participants were involved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination. [ABSTRACT FROM AUTHOR]

Introduction: Hospitalization due to cardiac conditions is increasing worldwide, and follow‐up after hospitalization usually occurs in a different healthcare setting than the one providing treatment during hospitalization. This leads to a risk of fragmented care and increases the need for coordination and continuity of care after hospitalization. Furthermore, international reports highlight the importance of improving continuity of care and state that it is an essential indicator of the quality of care. Patients' perceptions of continuity of care can be evaluated using the Patient Continuity of Care Questionnaire (PCCQ). However, the original version is extensive and may prove burdensome to complete; therefore, we aimed to develop and evaluate a short version of the PCCQ. Methods: This was a psychometric validation study. Content validity was evaluated among user groups, including patients (n = 7), healthcare personnel (n = 15), and researchers (n = 7). Based on the results of the content validity and conceptual discussions among the authors, 12 items were included in the short version. Data from patients were collected using a consecutive sampling procedure involving patients 6 weeks after hospitalization due to cardiac conditions. Rasch analysis was used to evaluate the psychometric properties of the short version of the PCCQ. Results: A total of 1000 patients were included [mean age 72 (SD = 10), 66% males]. The PCCQ‐12 presented a satisfactory overall model fit and a person separation index of 0.79 (Cronbach's α:.91, ordinal α:.94). However, three items presented individual item misfits. No evidence of multidimensionality was found, meaning that a total score can be calculated. A total of four items presented evidence of response dependence but, according to the analysis, this did not seem to affect the measurement properties or reliability of the PCCQ‐12. We found that the first two response options were disordered in all items. However, the reliability remained the same when these response options were amended. In future research, the benefits of the four response options could be evaluated. Conclusion: The PCCQ‐12 has sound psychometric properties and is ready to be used in clinical and research settings to measure patients' perceptions of continuity of care after hospitalization. Patient or Public Contribution: Patients, healthcare personnel and researchers were involved in the study because they were invited to select items relevant to the short version of the questionnaire. [ABSTRACT FROM AUTHOR]

Introduction: The informed consent process is key to safeguarding the autonomy of the participant in medical research. For this process to be valid, the information presented to the potential participant should meet their needs and be understood by them. The i‐CONSENT project has developed 'Guidelines for adapting the informed consent process in clinical trials' which aim to improve informed consent so that they are easier to understand and better adapted to the needs and preferences of the target population. The best way to tailor information to the characteristics and preferences of the target population is to involve the community itself. Methods: Following guidelines developed by i‐CONSENT, assent materials were co‐created for a mock clinical trial of the human papillomavirus vaccine in adolescents. During the process, two design thinking sessions were conducted involving a total of 10 children and 5 parents. The objectives of the sessions were to find out the children's opinion of the informed consent (assent in their case) process in clinical trials, identify the parts that were most difficult to understand and alternatives for their presentation and wording, identify the preferred formats for receiving the information and the main characteristics of these formats, design a video explaining the clinical trial and evaluate a tool for assessing comprehension. Results: Assent materials were co‐created in three formats: a web‐based material following a layered approach; a video in story format; a pdf document with an innovative way of presenting information compared to traditional assent documents. In addition, the Comprehension of Assent Questionnaire was co‐designed, based on the Quality of Informed Consent questionnaire. Conclusion: The design thinking methodology has proven to be an easy and useful tool for involving children in designing information tailored to their needs and preferences. Patient or Public Contribution: A sample of the target population participated in the design and piloting of the materials created using design thinking methodology. In addition, patient representatives participated in the design and evaluation of the guidelines developed by the i‐CONSENT project that were followed for the development of the materials in this study. [ABSTRACT FROM AUTHOR]

Introduction: To involve health service users in health care and health research priority setting, different methods exist. Which method is most suitable under which circumstances is unknown. We compared a postal Delphi survey and an in‐person workshop to involve health service users in priority settings for rehabilitative care and research in Germany. Methods: One hundred and eighty‐four former rehabilitants were randomly assigned to a postal Delphi survey (n = 152) or an in‐person workshop (n = 32). Two hundred and seventy‐six employees in rehabilitation were also invited to the Delphi Survey. The methodological comparison refers only to the sample of rehabilitants. Within each method, the participants agreed on the top 10 priorities for practice improvement and research in rehabilitative care. The priorities were compared descriptively. Participants' satisfaction was measured with the Public and Patient Engagement Evaluation Tool. The usability of both methods was compared based on the effort, time and material costs required for implementation. Results: Seventy‐five former rehabilitants and 41 employees in rehabilitation completed both Delphi survey rounds. Eleven former rehabilitants participated in the in‐person workshop. Priorities for practice improvement showed a high degree of overlap between both methods whereas research priorities differed greatly. Participants of the in‐person workshop felt significantly better prepared, more listened to and more likely to feel that different views on the topics were discussed. Participants of the Delphi survey expressed difficulties in understanding all survey questions. The Delphi survey was more elaborate in preparation and implementation but caused lower material costs. Conclusion: The differences in research priorities between the two methods could be due to the different samples, differences in the individual interests of participants or differences in the prioritization process. In‐person workshops seem to be more appropriate for complex topics, where clarifications of questions and deeper discussions are needed. Delphi surveys seem to be more suitable for easily understandable topics, larger sample sizes and when fewer financial resources are available. Patient or Public Contribution: The different study phases were supported by employees in rehabilitation and former rehabilitants (e.g., developing study documents, and interpreting results). [ABSTRACT FROM AUTHOR]

Introduction: In 24/7 disability care facilities, patient‐reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. Methods: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick‐offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. Results: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID‐19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. Conclusion: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility‐specific learning goals. Stakeholder engagement and co‐created strategies may have strengthened the adoption of and experiences with the implementation. Patient or Public Contribution: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact. [ABSTRACT FROM AUTHOR]

Introduction: The Covid‐19 restrictions of 2020–2021 are known to have undermined the UK population's mental health. Working alongside staff, peer trainers and students at Recovery in Mind (RiM), a Recovery College (RC) in West Berkshire, England, this mixed‐methods study is amongst the first to investigate how an RC has responded to the pandemic. Methods: Working in co‐production with RiM staff and peer‐trainers, this study employed a mixed‐methods design, gathering Warwick‐Edinburgh Mental Wellbeing Scale (WEMWBS) well‐being outcome measures by questionnaire and student experience, learning and co‐production by interviews. Findings: This research found that RiM continued to produce demonstrable improvements in student mental health. Students welcomed the way that RiM adapted to offering online and socially distanced provisions. Students valued the skills that RiM taught and the way that RiM courses reinforced prior learning; above this, however, they valued the mutual support and sense of community that participation provided. Conclusion: This study underlines the value of RCs maintaining 'hidden curriculums' of peer support and community involvement. This research emphasizes co‐production as not only a tool for empowerment or service improvement but as a valuable skill for personal mental health recovery. Even when operating under the most unforeseen or challenging of conditions, RCs should always endeavour to prioritize and maintain co‐production. Patient or Public Contribution: In accordance with the RC ethos, this was an entirely co‐produced study, with academic researchers and RiM staff and peer trainers working democratically in partnership with one another to design and manage the study and to write up and disseminate findings. To ensure the independence and rigour of findings, data analysis was undertaken by external academic researchers. [ABSTRACT FROM AUTHOR]

Background: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self‐help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self‐help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. Methods: A cross‐sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self‐Help and the federal associations of cancer self‐help. Results: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. Conclusions: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. Patient or Public Contribution: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self‐help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants. [ABSTRACT FROM AUTHOR]

Introduction: This mixed‐method study explores psychological needs, access and barriers in coronary heart disease (CHD) patients with and without mental health issues (MHI) within the German healthcare system. Methods: This study was conducted in three different healthcare settings: two hospitals, two rehabilitation clinics and three cardiology practices in Cologne, Germany. Patients were screened for angiographically documented CHD and other inclusion criteria. In total, 364 CHD patients took part in this study. It consisted of two parts: In the first part, participants filled in a newly developed questionnaire about their psychological needs, access and barriers within the healthcare system and their contact with their doctor in these matters. Then, patients were screened for MHIs with the help of the Hospital Anxiety and Depression Scale (HADS). When a score above seven was scored on the HADS, patients were additionally screened for specific MHIs using the Structured Clinical Interview for DSM‐IV Axis I Disorders. In the second part, 20 participants were subsequently interviewed in a semi‐structured interview to generate more in‐depth findings. Results: The interviews show that CHD patients with and without MHI experienced a cardiac event as life‐changing and had an urgent need to talk about CHD with their doctor, mostly the general practitioner (GP). When the GP spoke to the patient shortly after the cardiac event, patients experienced relief and were better able to cope with their illness. Only 9.1% reported being aided in their search for psychotherapeutic treatment or drug treatment (4.1%). Conclusion: The needs of CHD patients with and without MHI were not adequately satisfied within our sample. Psychological measures are necessary for sufficient improvement, such as training of doctors in doctor–patient communication (e.g., better support in coping with MHI/CHD), improvements in the procedure (more time for conversations during doctor contacts), and improvement of structural requirements (referring patients faster to psychotherapists). Patient or Public Contribution: We received input from patients during pretests and used the feedback to tailor our questionnaire and the interview guidelines. Afterwards, we disseminated the main results for the patient and public involvement (e.g., public lectures, leaflets for self‐help groups, etc.). [ABSTRACT FROM AUTHOR]

Introduction: When handover is conducted at the patient's bedside, active patient participation can be encouraged, which may improve the safety and quality of care. There is a need for valid and reliable tools to measure patient perceptions of participation in bedside handover, to ensure the rising number of implementation and improvement efforts are consistently and effectively evaluated. The aim of this study is to systematically develop and evaluate the psychometric properties of a self‐report survey to measure patients' perceptions of participation in bedside handover. Methods: In Phase 1, our team developed a conceptual framework and item pool (n = 130). In Phase 2, content validity was assessed with four health consumers, four nurses and four researchers. Next, 10 current hospital inpatients tested the survey for end‐user satisfaction. In Phase 3, 326 inpatients completed the survey, allowing exploratory factor analysis, reliability analyses and convergent/divergent validity analyses to occur. Results: Phase 1 and 2 resulted in a 42‐item survey. In Phase 3, 321 surveys were available for analysis. Exploratory factor analysis revealed a three‐factor solution, with 24 items, which matched our conceptual framework. The three factors were: 'Conditions for patient participation in bedside handover', 'Level of patient participation in bedside handover' and 'Evaluation of patient participation in bedside handover'. There was strong evidence for factor reliability and validity. Additionally, the correlation between factors was strong. Conclusion: This study furthers our conceptual understanding by showing that nurse facilitating behaviours are a strong precursor for patient participation and perceived handover outcomes, justifying the need for nursing training. A robust survey has been developed to measure patient perceptions of participation in bedside handover, which can effectively evaluate this approach to care. Engaging consumers and nurses as research team members was invaluable in ensuring that the survey is acceptable for end‐users. Patient or Public Contribution: A health consumer and nurse partnered as members of the research team from study inception to dissemination. [ABSTRACT FROM AUTHOR]

Introduction: The global prevalence of diabetes in 2019 in adults was estimated to be 9.3%. This study developed in Ecuador, for the first time, instruments to assess patient‐reported outcomes and experiences. Methods: The Experiences of the Person with Diabetes (EPD) Questionnaire is a diabetes‐specific instrument. A mixed‐methods study was conducted. First, a qualitative item development phase that included four focus groups and six semi‐structured interviews with patients was conducted in different rural and urban areas of Ecuador to obtain information on culture, beliefs, demographics, diet and social perspectives. A second quantitative phase for psychometric validation was carried out in primary care settings of rural and urban areas of Ecuador. Results: Forty‐two and four hundred and eighty‐nine participants were included in each phase, respectively. The item development phase resulted in a questionnaire of 44 items (23 for perceived outcomes and 21 for experiences). In the validation study, most participants were women (58%) and from urban areas (57%). Exploratory factor analysis revealed three dimensions for each instrument. Outcomes instrument dimensions were symptoms and burnout, worries and fears and social limitations. Experiences instrument dimensions were information, patient‐centred care and care delivery. Cronbach's α values of the total score and dimensions were high, ranging between.81 and.93 in both instruments. Confirmatory factor analysis showed an acceptable fit of the data. Conclusion: The EPD Questionnaire is probably the first instrument developed to assess patient‐reported experiences and perceived outcomes in a middle‐income country that included patients to capture all dimensions relevant for the intended population. Its psychometric properties are robust and could provide valuable information for clinicians and policymakers in the region. Patient or Public Contribution: The development of these instruments has taken into consideration patients and the public since their conception. A qualitative approach gathered relevant information related to the cultural, social and economic burden of different populations in Ecuador. Before validation, a pilot test was carried out with users of the National Health Services to obtain their perspectives and insights of the developed instrument. Finally, during the data analysis, we have given special consideration to social variables such as rural and urban populations. [ABSTRACT FROM AUTHOR]

Background: Pregnant and breastfeeding women's use of complementary medicine products (CMPs) is common, and possibly associated with autonomous health care behaviours. However, the health literacy levels and health locus of control (HLOC) beliefs of women who use CMPs in pregnancy and lactation have not been previously assessed in a large Australian sample. Aim: The aim of this study is to determine the health literacy levels and HLOC beliefs of women who use CMPs in pregnancy and lactation and determine the types of CMPs used. Methods: A cross‐sectional, national, online survey of Australian pregnant or breastfeeding women aged 18 years and older, and currently using CMPs was conducted. Results: A total of 810 completed surveys (354 pregnant and 456 breastfeeding women) were analysed. Most had adequate functional health literacy levels (93.3%). Health care practitioners (HCPs) HLOC mean scores were the highest for the sample, followed by Internal HLOC beliefs mean scores. Almost all (n = 809) took at least one dietary supplement, the most popular being pregnancy and breastfeeding multivitamins, iron supplements and probiotics. Use was generally in line with clinical recommendations, except for low rates of iodine supplementation. Herbal medicine use was lower for the total sample (57.3%, n = 464), but significantly higher (p <.0001) for the breastfeeding cohort, with consumers taking one to four herbal medicines each. The most popular herbs were raspberry leaf, ginger, peppermint and chamomile (pregnant respondents) and chamomile, ginger and fenugreek (breastfeeding respondents). Conclusions: Respondents were health literate, with high scores for Internal and HCP HLOC scales, suggesting that they are likely to demonstrate self‐efficacy, positive health behaviours and work well in partnership with HCPs. HCPs can facilitate discussions with pregnant and breastfeeding women using CMPs, while considering women's health literacy levels, health beliefs and goals. [ABSTRACT FROM AUTHOR]

Background: The number of individuals who are diagnosed with attention‐deficit hyperactivity disorder (ADHD) during adulthood has increased in recent years. However, there is still no decision aid (DA) to help adults newly diagnosed with ADHD make decisions regarding further treatments. Objective: This study aimed to describe the development process of a DA for adults newly diagnosed with ADHD and its field testing during the shared decision‐making (SDM) process in a clinical setting. Methods: The development process involved the creation of a DA prototype using the International Patient Decision Aid Standards criteria and revision of the prototype through the stakeholders' reviews. The field testing of the DA compared scores before and after the SDM process on the service users' knowledge scale, decisional conflict scale and the Conners Adult ADHD Rating Scales. Results: The developed DA contained options of watchful waiting with own coping skills and pharmacological treatment, which consisted of several kinds of drug options. Fifteen adults newly diagnosed with ADHD participated in the field testing. The participant decision‐making quality outcomes such as their knowledge and decisional conflict improved after the SDM process. ADHD severity did not change. Conclusion: A DA for adults with ADHD was systematically developed following the international criteria. Field testing indicated that the DA could serve as a tool to facilitate the SDM process. Further research on this DA is necessary before its routine implementation. Patient or Public Contribution: During the development process of the DA, the service users who had already been diagnosed with ADHD reviewed the DA prototype and provided feedback, which improved the final version of the DA. [ABSTRACT FROM AUTHOR]

Background Advocacy has a critical role to play in addressing concerns about access to appropriate mental health care and treatment for African and Caribbean men. Aim To investigate good practice principles and organizational models for mental health advocacy provision for African and Caribbean men. Study design The study consisted of: (i) A systematic literature review. Bibliographic and internet searching was undertaken from 1994 to 2006. The inclusion criteria related to mental health, advocacy provision for African and Caribbean men. (ii) Four focus groups with African and Caribbean men to explore needs for and experiences of mental health advocacy. (iii) An investigation into current advocacy provision through a survey of advocacy provision in England, Wales and Northern Ireland. (iv) Twenty-two qualitative stakeholder interviews to investigate the operation of mental health advocacy for this client group. The study was undertaken in partnership with two service user-led organizations and an African Caribbean mental health service. Results Primary research in this area is scant. Mainstream mental health advocacy services are often poor at providing appropriate services. Services developed by the Black Community and voluntary sector are grounded in different conceptualizations of advocacy and sharper understanding of the needs of African and Caribbean men. The lack of sustainable funding for these organizations is a major barrier to the development of high-quality advocacy for this group, reflecting a lack of understanding about their distinctive role. Conclusions The commissioning and provision of mental health advocacy needs to recognize the distinct experiences of African and Caribbean men and develop capacity in the range of organizations to ensure equitable access. [ABSTRACT FROM AUTHOR]

Background: Parents of disabled children report poorer inpatient experiences when they stay in hospital, and some staff report finding communicating with disabled children challenging. This study tested the feasibility of implementing a training package for staff on paediatric wards to improve communication with disabled children, especially those with communication difficulties, and their families. The package was developed with parent carers and clinicians, and comprises a manual, a video of parent carers talking about real experiences, discussion points and local resources. The 50‐minutes training is intended for in‐house delivery by local facilitators. Methods: Thirteen training sessions were delivered in paediatric wards across four hospitals in England, totalling 123 staff who took part. Participants completed questionnaires before (n = 109) and after (n = 36) training, and a sample of champions (senior clinicians) and facilitators were interviewed at the end of the study. Results: Facilitators found the training easy to deliver, and participants felt they took away important messages to improve their practice. After the training, further changes were reported at an organizational level, including offering further training and reviewing practices. Conclusions: This study provides supporting evidence for the implementation of a low‐cost, minimal‐resource training package to support staff communication with children and their families in hospitals. It provides promising indication of impact on behavioural change at the individual and organizational level. Patient and public contribution: Parent carers identified the need and helped to develop the training, including featuring in the training video. They were also consulted throughout the study on research design, delivery and reporting. [ABSTRACT FROM AUTHOR]

Background: Our study aimed to evaluate to what extent Zero2 Expo's 'Birthing a Better Future', a co‐created multimedia exhibition, was effective in raising awareness on the importance of the first 1001 days of life and explore what refinements would help to optimize the impact of future exhibitions. Methods: We conducted a mixed‐methods evaluation of the exhibition delivered in the John Radcliffe Hospital, Oxford. Through convenience sampling, 14 participants were selected to participate in 12 structured interviews and 19 participants completed a questionnaire. Interviews were thematically analysed alongside quantitative analysis of questionnaire responses through Likert scales. Results: The majority (78.6%, n = 11/14) of participants who completed the questionnaire either agreed or strongly agreed that the exhibition raised their awareness about the first 1001 days of life. This was supported by the analysis of interviews. The use of art was found to provoke an emotional engagement from participants. Participants felt that the length of the written pieces and location of the exhibition were important factors for designers to consider in future exhibitions. Conclusion: This study demonstrated that multimedia exhibitions, combining science with art, may be an effective way to raise awareness of public health messages. Engaging with key stakeholders will be an essential step in order to improve future public health exhibitions. Public Contribution: When designing the study, the public reviewed the study tools, which were refined based on their feedback. At every phase of the study, members of the public who are artists co‐created the exhibition content. [ABSTRACT FROM AUTHOR]

Context: Partnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective: To co‐construct a tool for measuring the degree of partnership between patients and HCPs. Design: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. Results: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. Conclusions: The CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings. Patient or Public Contribution: Patients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article. [ABSTRACT FROM AUTHOR]

Background: Patient activation describes the knowledge, skills and confidence in managing one's own health. Promoting patient activation is being prioritized to reduce costs and adverse outcomes such as cardiovascular disease (CVD). The increasing prevalence of chronic kidney disease (CKD) presents a need to understand the characteristics that influence patient activation and the effect on health outcomes. Design: Cross‐sectional study. Setting and participants: Patients with non‐dialysis CKD recruited from 14 sites (general nephrology and primary care) in England, UK. Outcome measures: Patient activation was measured using the PAM‐13. Demographic and health‐related variables, self‐reported symptom burden, health‐related quality of life (HRQOL), socioeconomic status (SES), were assessed as determinants of patient activation. Major CVD risk factors included hypertension, dyslipidaemia, obesity and hyperkalaemia. Results: 743 patients were included (eGFR: 32.3 (SD17.1) mL/min/1.73 m2, age 67.8 (SD13.9) years, 68% male). The mean PAM score was 55.1 (SD14.4)/100. Most patients (60%) had low activation. Those with low activation were older (P<.001), had lower eGFR (P =.004), greater number of comorbidities (P =.026) and lower haemoglobin (P =.025). Patients with low activation had a 17% greater number of CVD risk factors (P <.001). Risk factors in those with low activation were being older (P <.001) and having diabetes (P <.001). Conclusion: This study showed that only a minority of CKD patients are activated for self‐management. Our findings help better understand the level of activation in these patients, particularly older individuals with multimorbidity, and further the knowledge regarding the characteristics that influence activation. Patient or Public Contribution: Patients were involved in the design of main study. [ABSTRACT FROM AUTHOR]

Background: Gout treatment is not optimized globally, often due to therapeutic inertia by physicians or poor adherence to urate‐lowering medications by patients. A patient decision aid (PDA) to facilitate shared decision making (SDM) in gout treatment may overcome these physician‐patient barriers. Objective: The study explored the views of physicians and patients on a novel locally designed gout treatment PDA prototype. Design: Qualitative descriptive design was used to gather data from in‐depth‐interviews (IDI) and focus group discussions (FGD). Data analysis was via thematic analysis. Emergent themes shaped a revised version of the PDA. Setting and participants: Adult Asian patients with recent acute gout exacerbations and local Primary Care Physicians (PCP) in Singapore were purposefully chosen. 15 patients with gout and 11 PCPs participated across three IDIs and six FGDs, with the investigators exploring their views of a prototype gout treatment PDA. Results: Patients and physicians generally concurred with the content and design of the PDA prototype. However, while patients preferred fewer treatment details, the PCPs desired more information. Patients preferred the display of statistics, while PCPs felt that numbers were not relevant to patients. The latter were hesitant to include treatment options that were unavailable in primary care. Both stakeholders indicated that they would use the PDA during a consultation. PCPs would need further training in SDM, given a lack of understanding of it. Conclusion and patient contribution: Patients will be the prime users of the PDA. While their views differed partially from the physicians, both have jointly developed the novel gout treatment PDA. [ABSTRACT FROM AUTHOR]

Objective: This study examined the influence of physicians' recommendations and gender on the decision‐making process in a preference‐sensitive situation. Methods: N = 201 participants were put in a hypothetical scenario in which they suffered from a rupture of the anterior cruciate ligament (ACL). They received general information on two equally successful treatment options for this injury (surgery vs physiotherapy) and answered questions regarding their treatment preference, certainty and satisfaction regarding their decision and attitude towards the treatment options. Then, participants watched a video that differed regarding physician's recommendation (surgery vs physiotherapy) and physician's gender (female vs male voice and picture). Afterwards, they indicated again their treatment preference, certainty, satisfaction and attitude, as well as the physician's professional and social competence. Results: Participants changed their treatment preferences in the direction of the physician's recommendation (P <.001). Decision certainty (P <.001) and satisfaction (P <.001) increased more strongly if the physician's recommendation was congruent with the participant's prior attitude than if the recommendation was contrary to the participant's prior attitude. Finally, participants' attitudes towards the recommended treatment became more positive (surgery recommendation: P <.001; physiotherapy recommendation: P <.001). We found no influence of the physician's gender on participants' decisions, attitudes, or competence assessments. Conclusion: This research indicates that physicians should be careful with recommendations when aiming for shared decisions, as they might influence patients even if the patients have been made aware that they should take their personal preferences into account. This could be particularly problematic if the recommendation is not in line with the patient's preferences. [ABSTRACT FROM AUTHOR]

Objective: To participate in shared decision making (SDM), patients need to understand their options and develop trust in their own decision‐making abilities. Two experiments investigated the potential of decision aids (DAs) in preparing patients for SDM by raising awareness of preference‐sensitivity (Study 1) and showing possible personal motives for decision making (Study 2) in addition to providing information about the treatment options. Methods: Participants (Study 1: N = 117; Study 2: N = 217) were put into two scenarios (Study 1: cruciate ligament rupture; Study 2: contraception), watched a consultation video and were randomized into one of three groups where they received additional information in the form of (a) narrative patient testimonials; (b) non‐narrative decision strategies; and (c) an unrelated text (control group). Results: Participants who viewed the patient testimonials or decision strategies felt better prepared for a decision (Study 1: P <.001, ηP2 = 0.43; Study 2: P <.001, ηP2 = 0.57) and evaluated the decision‐making process more positively (Study 2: P <.001, ηP2 = 0.13) than participants in the control condition. Decision certainty (Study 1: P <.001, ηP2 = 0.05) and satisfaction (Study 1: P <.001, ηP2 = 0.11; Study 2: P =.003, d = 0.29) were higher across all conditions after watching the consultation video, and certainty and satisfaction were lower in the control condition (Study 2: P <.001, ηP2 = 0.05). Discussion: Decision aids that explain preference‐sensitivity and personal motives can be beneficial for improving people's feelings of being prepared and their perception of the decision‐making process. To reach decision certainty and satisfaction, being well informed of one's options is particularly relevant. We discuss the implications of our findings for future research and the design of DAs. [ABSTRACT FROM AUTHOR]

Background: Health knowledge, as an important resource of online health communities (OHCs), attracts users to engage in OHCs and improve the traffics within OHCs, thereby promoting the development of OHCs. Seeking and contributing health knowledge are basic activities in OHCs and are helpful for users to solve their health‐related problems, improve their health conditions and thus influence their evaluation of OHCs (ie perceived value of OHCs). However, how do patients' health knowledge seeking and health knowledge contributing behaviours together with other factors influence their perceived value of OHCs? We still have little knowledge. Objective: In order to address the above gap, we root the current study in social cognitive theory and prior related literature on health knowledge sharing in OHCs and patients' perceived value. We treat health knowledge seeking and health knowledge contributing behaviours as behavioural factors and structural social capital as an environmental factor and explore their impacts on patients' perceived value of OHCs. Design: We have built a theoretical model composed of five hypotheses. We have designed a questionnaire composed of four key constructs and then collected data via an online survey. Setting and participants: We have distributed the questionnaire in two Chinese OHCs. We obtained a sample of 352 valid responses that were completed by patients having a variety of conditions. Results: The empirical results indicate that health knowledge seeking and health knowledge contributing have positive impacts on patients' perceived value of OHCs. The impact of health knowledge seeking on patients' perceived value of OHCs is greater than the impact of health knowledge contributing. In addition, structural social capital moderates the effects of health knowledge seeking and health knowledge contributing on patients' perceived value of OHCs. It weakens the effect of health knowledge seeking but enhances the effect of health knowledge contributing on patients' perceived value of OHCs. Conclusions: These findings contribute to the literature on patients' perceived value of OHCs and on the role of structural social capital in OHCs. For OHC managers, they should provide their users more opportunities to seek or contribute health knowledge in their communities. [ABSTRACT FROM AUTHOR]

Background: As the coronavirus disease 2019 (COVID‐19) pandemic is sweeping across the globe, there is an urgent need to develop effective vaccines as the most powerful strategy to end the pandemic. This study aimed to examine how factors related to vaccine characteristics, their social normative influence and convenience of vaccination can affect the public's preference for the uptake of the COVID‐19 vaccine in China. Methods: An online discrete choice experiment (DCE) survey was administered to a sample of China's general population. Participants were asked to make a series of hypothetical choices and estimate their preference for different attributes of the vaccine. A mixed logit regression model was used to analyse the DCE data. Willingness to pay for each attribute was also calculated. Results: Data of 1236 participants who provided valid responses were included in the analysis. There was strong public preference for high effectiveness of the vaccine, followed by long protective duration, very few adverse events and being manufactured overseas. Price was the least important attribute affecting the public preference in selecting the COVID‐19 vaccine. Conclusions: The strong public preferences detected in this study should be considered when developing COVID‐19 vaccination programme in China. The results provide useful information for policymakers to identify the individual and social values for a good vaccination strategy. Patient or Public Contribution: The design of the experimental choices was fully based on interviews and focus group discussions participated by 26 Chinese people with diverse socio‐economic backgrounds. Without their participation, the study would not be possible. [ABSTRACT FROM AUTHOR]

Background: Measurement of physicians' competence in shared decision making (SDM) remains challenging with frequent disagreement between assessment methods. Objective: To conceptualize and measure physicians' SDM competence as an organized network of behavioural skills and to determine whether processing patient‐reported data according to this model can be used to predict observer‐rated competence. Design: Secondary analysis of an observational study. Setting and participants: Primary and specialty outpatient care physicians and consecutively recruited adult patients with a chronic condition who faced a treatment decision with multiple acceptable choices. Measures: Network parameters constructed from patients' assessment of physicians' SDM skills as measured by the 9‐item Shared Decision Making Questionnaire (SDM‐Q‐9) and observer‐rated SDM competence of physicians measured by three widely used observer‐rated instruments. Results: 29 physicians (12 female, 17 male; mean age 50.3 years) recruited 310 patients (59.4% female, 40.6% male; mean age 54.0 years) facing a decision mainly regarding type 2 diabetes (36.4%), chronic back pain (32.8%) or depressive disorder (26.8%). Although most investigated skills were interrelated, elicitation of the patient's treatment preferences showed the strongest associations with the other skills. Network parameters of this skill were also decisive in predicting observer‐rated competence. Correlation between predicted competence scores and observer‐rated measurements ranged from 0.710 to 0.785. Conclusions: Conceptualizing physicians' SDM competence as a network of interacting skills enables the measurement of observer‐rated competence using patient‐reported data. In addition to theoretical implications for defining and training medical competences, the findings open a new way to measure physicians' SDM competence under routine conditions. [ABSTRACT FROM AUTHOR]