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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

Background: In the management of epidemics, like COVID‐19, trade‐offs have to be made between reducing mortality and morbidity and minimizing socioeconomic and political consequences. Traditionally, epidemic management (EM) has been guided and executed attentively by experts and policymakers. It can, however, still be controversial in the public sphere. In the last decades, public engagement (PE) has been successfully applied in various aspects of healthcare. This leads to the question if PE could be implemented in EM decision‐making. Methods: From June to October 2020, seven deliberative discussion focus groups were executed with 35 Dutch citizens between 19 and 84 years old. Their views on PE in COVID‐19 management were explored. The deliberative approach allows for the education of participants on the topic before the discussion. The benefits, barriers, timing and possible forms of PE in EM were discussed. Results: Almost all participants supported PE in EM, as they thought that integrating their experiences and ideas would benefit the quality of EM, and increase awareness and acceptance of measures. A fitting mode for PE was consultation, as it was deemed important to provide the public with possibilities to share ideas and feedback; however, final authority remained with experts. The publics could particularly provide input about communication campaigns and control measures. PE could be executed after the first acute phase of the epidemic and during evaluations. Conclusions: This paper describes the construction of an empirically informed framework about the values and conditions for PE in EM from the perspective of the public. Participants expressed support to engage certain population groups and considered it valuable for the quality and effectiveness of EM; however, they expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience. Patient or Public Contribution: No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, all women aged 30–60 years are invited to participate in the national cervical cancer screening programme, which is aimed at early detection and treatment of precancerous lesions. One fourth of the Dutch population has a migration background, with Turkish and Moroccan immigrants being the largest immigrant populations. Turkish‐ and Moroccan‐Dutch women show lower screening participation rates and a higher incidence of cervical cancer, compared to native Dutch women. Since current information materials are not tailored to these women's needs, we developed a short culturally sensitive educational video to facilitate informed decision‐making for cervical cancer screening among Turkish‐ and Moroccan‐Dutch women. This article describes the development process of this video and the lessons learned. Methods: Using the Entertainment–Education communication strategy, we collaborated with an interdisciplinary team of Turkish‐ and Moroccan‐Dutch women, researchers, public health experts, and creative media professionals. We developed the video following the different stages of the Media Mapping model: Orientation, Crystallization, Design/Production, Implementation, and Dissemination. Each stage is described in the paper. Results: The video was developed in Moroccan‐Arabic, ‐Berber and Turkish, and emphasized three main themes: (1) more certainty about having cervical (pre)cancer and the possibility to prevent treatment, surgery, or premature death, and because of this, being there for the children, (2) according to the Islam, a woman should take good care of her health, and (3) anxiety, shame, and privacy. Conclusions: A short culturally sensitive educational video, delivered as part of a larger intervention together with the current information brochure, was developed based on theory and grounded in the needs of Turkish‐ and Moroccan‐Dutch women. The value and effectiveness of this intervention to facilitate informed cervical cancer screening decisions are evaluated in a randomised controlled trial. Patient or Public Contribution: We collaborated with Turkish‐ and Moroccan‐Dutch women during the development process of a short culturally sensitive educational video. Turkish‐ and Moroccan‐Dutch women were also invited to watch the raw footage to verify whether the content and presentation matched their needs and requirements. [ABSTRACT FROM AUTHOR]

Background: Community engagement is seen as key to citizen‐centred and sustainable healthcare systems as involving citizens in the designing, implementation and improvement of services and policies is thought to tailor these more closely to communities' own needs and experiences. Organizations have struggled to reach out to and involve disadvantaged citizens. This paper examines how if, why, and when low‐income citizens wish to be involved. Methods: For this qualitative realist case‐study, 19 interviews (one dyad) were held with (20) low‐income citizens in two Dutch municipalities. Additionally, the results were discussed with a reference panel consisting of professionals and citizens to enrich the results and to ensure the results had face validity. Results: The results showed four different ways in which low‐income citizens wished to be involved: (a) in a practical/volunteer way; (b) as a buddy; (c) as a lay expert; (d) not involved at all. The factors affecting citizens' interest and capacity to participate include citizens' own experiences of the services they access and their personal situations, e.g. their mental or physical health, extent of financial crisis, family situation, home environment. None of the interviewees was currently involved, but all had ideas for improving health(care) services and policies. Citizens' experiences of the services they accessed acted as a motivator for some to be involved as they wanted to ensure others would not have the same struggles, while for others their own needs and an apathetic system remained too high a barrier. To enable involvement, citizens need continued support for their own health(care) and financial situation, better communication and accessibility from services, practical support (e.g., training and bus passes) and recognition for their input (e.g., monetary compensation). Conclusion: The study shows that citizens' experiences of the services they accessed influenced if and how they wanted to be involved with health and care services. Despite the fact that all participants had shared solid ideas for improving services and policies, they were hindered by a bureaucratic, impersonal and inaccessible system. Organizations seem to underestimate the required investments to reach out to low‐income citizens and the support required to ensure their involvement. Patient and Public Involvement (PPI) in Study: Citizens as well as PPI organizations were members of the reference panel who helped formulate the research questions and recruitment strategy. The local reference panel also helped to interpret and refine the initial findings. [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]

Background: Patient‐directed knowledge tools such as patient versions of guidelines and patient decision aids are increasingly developed to facilitate shared decision making. In this paper, we report how consensus was reached within the Netherlands on quality criteria for development, content and governance of these tools. Method: A 12‐month development and consensus study. The consortium worked on four work packages: (a) reviewing existing criteria; (b) drafting the quality criteria; (c) safe‐guarding the acceptability and feasibility of the draft criteria by participatory research in on‐going tool development projects; and (d) gaining formal support from national stakeholders on the quality criteria. Results: We reached consensus on a 8‐step guidance; describing minimal quality criteria for (a) the team composition; (b) setting the scope; (c) identifying needs; (d) the content and format; (e) testing the draft; (f) finalizing and approval; (g) dissemination and application, and (h) ownership and revision. The participants of the on‐going tool development projects were positive about the quality criteria in general, but divided as to the degree of detail. Whereas some expressed a clear desire for procedural standards, others felt that it would be sufficient to provide only general directions. Despite the different views as to the degree of detail, consensus was reached in three stakeholder meetings. Discussion: We successfully collaborated with all stakeholders and achieved formal support from national stakeholders on a set of minimum criteria for the development process, content and governance of patient‐directed knowledge tools. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision‐making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. Results: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self‐awareness; (5) consideration skills; (6) self‐efficacy; (7) emotional distress; and (8) experienced time. We developed the 20‐item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

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

Introduction: Understanding participants' concerns and information needs regarding broadened consent is crucial to ensure transparency and participant autonomy. Our study qualitatively examined these issues in women participating in the Personalized RISk‐based MAmmascreening study (PRISMA). The original PRISMA informed consent was project‐specific (i.e., breast cancer research), limiting the scope of secondary research. We explored participants' needs for broadened consent to preserve informed decision‐making while maximising the potential re‐use of data. Methods: Focus groups (FGs) were performed following a semistructured discussion guide. Two independent researchers analysed the data thematically using an inductive approach. Findings: Twenty‐three asymptomatic women and 13 women diagnosed with breast cancer were randomly divided into six FGs. Four superordinate themes were identified: (1) Normalization, (2) Attitude towards the pharmaceutical industry, (3) Privacy and (4) Knowledge. Our participants viewed data sharing as an important conduit for advancing medical science. Perceived integrity was more often attributed to noncommercial than commercial parties, with a marked mistrust towards the pharmaceutical industry. Most requested information needs related to data protection. Participants' ideal consent process would confer a range of options; for example, they would be able to choose with whom data can be shared, whether data will be de‐identified or anonymous, the expiration date of their consent and how, if requested, general and personal study results would be disclosed. Conclusion: Our participants expressed clear information needs and a strong desire to be actively engaged in future data sharing decisions. Given that many researchers collaborate with commercial parties, building public confidence in these institutions would be beneficial. Illustrative examples addressing privacy concerns and clarifying difficult terms would aid consent decision‐making. Although our participants displayed great altruism in sharing their data and accepted that broad consent would ultimately facilitate future research, broad consent did not reflect their ideal situation. Dynamic consent may be an option but warrants further feasibility research. Patient and Public Contribution: Women were recruited from the general breast cancer screening population. Their perceptions and information needs, as reported in this study, will not only inform broadened consent for PRISMA but ideally guide other consent templates and decisions regarding consent processes. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to understand the provision and need, quality of and trust in COVID‐19 vaccines information from the perspectives of people who have had COVID‐19 infection. Method: People who have had a COVID‐19 infection were approached via their general practice and invited to participate in the Nivel Corona Cohort. They completed questionnaires at baseline (Q1), and at three months (Q2). Outcome measures were based on health information‐seeking behaviour, as used in the Comprehensive Model of Information Seeking. Antecedents (i.e., gender, age, education level, health literacy) were used from Q1, and one's beliefs and experiences (i.e., trust in the information and healthcare system, how applicable the information is), information carrier factors (i.e., information quality perceptions and via which sources), health‐information seeking actions (i.e., decision to vaccinate and information sufficiency) and vaccination status from Q2. Data were analysed using descriptive analyses, analysis of variance tests (F‐tests) and χ2 tests with the statistical software STATA. Results: Of the respondents (N = 314), 96% were vaccinated at least once, mostly after having had the virus. Most retrieved information about COVID‐19 vaccines on the website of the National Institute for Public Health and the Environment (79%), broader via the internet (56%), or from family and friends (35%). Almost all had trust in the information (89%) and healthcare system (94%). Most found the information applicable to their situation (67%). Moreover, most perceived the information as correct (71%) and did not perceive the information to be misleading (85%), while fewer people found the information reliable (59%) and clear (58%). Overall, the majority indicated that the information met their expectations to make a well‐informed decision to vaccinate (89%). Conclusion: Different characteristics of people who had COVID‐19 and sought information were identified, which is important to offer tailored information. People who had COVID‐19 in this study, mainly middle‐aged, vaccinated and highly educated, were generally positive about the vaccines information, but overall the reliability and clarity could be improved. This is important for a high vaccination uptake, booster programs and coming pandemics. Patient or Public Contribution: The questionnaire was reviewed by patients who had COVID‐19, one of whom is a health services researcher. [ABSTRACT FROM AUTHOR]

Introduction: Integrated care can create several advantages, such as better quality of care and better outcomes. These advantages apply especially to clients with multiple problems (CWMPs) who have multiple, interconnected needs that span health and social issues and require different health care (e.g., mental health care or addiction care), social care (e.g., social benefits) and welfare services at the same time. Integrated care is most often studied as a phenomenon taking place at the system, organizational, professional and clinical levels. Therefore, in many studies, clients seem to be implicitly conceptualized as passive recipients of care. Less research has been conducted on how clients and (in)formal caretakers coproduce integrated care. Methods: We performed a longitudinal study to investigate how CWPMs and (in)formal caretakers coproduce integrated care. Data were collected among CWMPs and their (in)formal caretakers in Rotterdam, the Netherlands. CWMPs' care trajectories were followed for 1–1.5 years. CWMPs were interviewed three times at an interval of 6 months (T0, T1, T2). Informal caretakers were interviewed three times (T0, T1, T2), and formal caretakers of 16 clients were interviewed twice (T1, T2). Data in the municipal record systems about participating CWMPs were also included. Results: Our study shows that the CWMPs' multidimensional needs, which should function as the organizing principle of integrated care, are rarely completely assessed at the start (first 6 weeks) of CWMPs' care trajectories. Important drivers behind this shortcoming are the urgent problems CWMPs enter the support trajectory with, their lack of trust in 'the government' and the complexity of their situations. We subsequently found two distinct types of cases. The highest level of integrated care is achieved when formal caretakers initiate an iterative process in which the CWMP's multidimensional needs are constantly further mapped out and interventions are attuned to this new information. Conclusions: Our study indicates that integrated care is the joint product of formal caretakers and CWMPs. Integrated care however does not come naturally when CWMPs are 'put at the center'. Professionals need to play a leading role in engaging CWMPs to coproduce integrated care. Patient Contribution: CWMPs and their (in)formal caretakers participated in this study via interviews and contributed with their experiences of the process. [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: Experience‐based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long‐term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods: Through a participatory research approach, EBCD was adjusted to long‐term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results: The participatory research resulted in the development of 'Ask us!'—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long‐term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo‐voice and involving experts‐by‐experiences as co‐ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo‐elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts‐by‐experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible. Conclusion: The result of a robust participatory process, 'Ask us!' is a promising method for participatory quality improvement in long‐term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. Patient or Public Contribution: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions. [ABSTRACT FROM AUTHOR]

Background: To support patients in shared decision‐making about treatment options, patient decision aids (PtDAs) usually provide benefit/harm information and value clarification methods (VCMs). Recently, personalized risk information from prediction models is also being integrated into PtDAs. This study aimed to design decision‐relevant information (i.e., personalized survival rates, harm information and VCMs) about adjuvant breast cancer treatment in cocreation with patients, in a way that suits their needs and is easily understandable. Methods: Three cocreation sessions with breast cancer patients (N = 7–10; of whom N = 5 low health literate) were performed. Participants completed creative assignments and evaluated prototypes of benefit/harm information and VCMs. Prototypes were further explored through user testing with patients (N = 10) and healthcare providers (N = 10). The researchers interpreted the collected data, for example, creative and homework assignments, and participants' presentations, to identify key themes. User tests were transcribed and analysed using ATLAS.ti to assess the understanding of the prototypes. Results: Important information needs were: (a) need for overview/structure of information directly after diagnosis and; (b) need for transparent benefit/harm information for all treatment options, including detailed harm information. Regarding VCMs, patients stressed the importance of a summary/conclusion. A bar graph seemed the most appropriate way of displaying personalized survival rates; the impact of most other formats was perceived as too distressful. The concept of 'personalization' was not understood by multiple patients. Conclusions: A PtDA about adjuvant breast cancer treatment should provide patients with an overview of the steps and treatment options, with layers for detailed information. Transparent information about the likelihood of benefits and harm should be provided. Given the current lack of information on the likelihood of side effects/late effects, efforts should be made to collect and share these data with patients. Further quantitative studies are needed to validate the results and to investigate how the concept of 'personalization' can be communicated. Patient or Public Contribution: Ten breast cancer patients participated in three cocreation sessions to develop decision‐relevant information. Subsequent user testing included 10 patients. The Dutch Breast Cancer Association (BVN) was involved as an advisor in the general study design. [ABSTRACT FROM AUTHOR]

Background: In primary care, a shift from a disease‐oriented approach for patients with multimorbidity towards a more person‐centred approach is needed. Aim: To transform a self‐report questionnaire for patients with chronic conditions in primary care, the Primary Care Functioning Scale (PCFS), into an understandable, visually attractive and feasible consultation tool for patients and health care providers. The consultation tool consists of a web‐based version of the PCFS, which is filled in by the patient and is processed to a feedback report that summarizes and visualizes the main findings. The feedback report can be discussed with the patient to facilitate a more person‐centred conversation for patients with chronic conditions and multimorbidity in general practice. Design and Setting: In this qualitative study, we developed the consultation tool by using design thinking in a participatory developmental process. Methods: In the first phase, we constructed five different feedback report templates to summarize and display the results of a completed PCFS questionnaire in a series of two expert meetings with patients and general practitioners (GPs). In the second phase, we performed an exploratory qualitative interview study involving dyads of patients with chronic conditions and their practice nurses. In an iterative process, we explored their experiences with the consultation tool. Results: Patients, as well as GPs, preferred a clear manner of presenting the results of the questionnaire in a feedback report. In 18 interviews with patients and practice nurses during three different interview rounds, we adjusted the feedback report and consultation tool based on the input from patients and practice nurses. After the final interview round, patients and practice nurses consented that the consultation tool was useful for having a more in‐depth consultation about functioning and patients' preferences when integrated into the regularly scheduled consultations. Conclusion: We were able to develop an understandable and feasible consultation tool that is applicable in already existing chronic disease management programmes in general practice in the Netherlands. Patient or Public Contribution: To increase the understandability and feasibility of the consultation tool, we collaborated with end‐users and actively involved patients, GPs and practice nurses in a participatory development process. [ABSTRACT FROM AUTHOR]

Background: Active patient involvement in treatment decisions is seen as a feature of patient‐centred care that will ultimately lead to better healthcare services and patient outcomes. Although many factors have been identified that influence patient involvement in treatment decisions, little is known about the different views that patients have on which factors are most important. Objective: This study explores the views of patients with a chronic condition on factors influencing their involvement in treatment decisions. Design: Q‐methodology was used to study the views of patients. Respondents were asked to rank a set of 42 statements from the least important to the most important for active patient involvement in treatment decision‐making. The set of 42 statements was developed based on a literature search and a pilot in which two external researchers, 15 patients and four healthcare professionals participated. A total of 136 patients with one of three major chronic conditions were included: diabetes types 1 and 2, respiratory disease (i.e., chronic obstructive pulmonary disease and asthma) and cancer (i.e., breast cancer and prostate cancer). Data were collected in a face‐to‐face interview setting in the Netherlands. Results: Four distinct views on the factors influencing active patient involvement were identified among patients with a chronic condition. (1) Enabled involvement: the extent to which patients are facilitated and empowered to participate will lead to patient involvement. (2) Relationship‐driven involvement: the relationship between patients and healthcare professionals drives patient involvement. (3) Disease impact‐driven involvement: the severity of disease drives patient involvement. (4) Cognition‐driven involvement: knowledge and information drive patient involvement. Discussion and Conclusion: From the patients' perspective, this study shows that there is no one‐size‐fits‐all approach to involving patients more actively in their healthcare journey. Strategies aiming to enhance active patient involvement among patients with a chronic condition should consider this diversity in perspectives among these patients. Patient Contribution: Patients are the respondents as this study researches their perspective on factors influencing patient involvement. In addition, patients were involved in pilot‐testing the statement set. [ABSTRACT FROM AUTHOR]

Background: In implementation science, vast gaps exist between theoretical and practical knowledge. These gaps prevail in the process of getting from problem analysis to selecting implementation strategies while engaging stakeholders including care users. Objective: To describe a process of how to get from problem analysis to strategy selection, how to engage stakeholders, and to provide insights into stakeholders' experiences. Design: A qualitative descriptive design. Setting and participants: The setting was a care organization providing long‐term care to people with acquired brain injuries who are communication vulnerable. Fourteen stakeholders (care users, professionals and researchers) participated. Data were collected by a document review, five interviews and one focus group. Inductive content analysis and deductive framework analysis were applied. Intervention: Stakeholder engagement. Main outcome measures: A three‐step process model and stakeholders experiences. Results and conclusion: We formulated a three‐step process: (a) reaching consensus and prioritizing barriers; (b) categorizing the prioritized barriers and idealization; and (c) composing strategies. Two subthemes continuously played a role in how stakeholders were engaged during the process: communication supportive strategies and continuous contact. The experiences of stakeholder participation resulted in the following themes: stakeholders and their roles, use of co‐creation methods and communication supportive strategies, building relationships, stimulus of stakeholders to engage, sharing power, empowerment of stakeholders, feeling a shared responsibility and learning from one another. We conclude that the inclusion of communication‐vulnerable care users is possible if meetings are prepared, communication‐friendly presentations and reports are used, and relationship building is prioritized. [ABSTRACT FROM AUTHOR]

Background: Malnutrition is a risk factor for impaired functionality and independence. For optimal treatment of malnourished older adults (OA), close collaboration and communication between all stakeholders involved (OA, their caregivers and health‐care and welfare professionals) is important. This qualitative study assesses current collaboration and communication in nutritional care over the continuum of health‐care settings and provides recommendations for improvement. Methods: Eleven structured focus group interviews and five individual interviews took place in three regions across the Netherlands from November 2017 until February 2018, including OA, caregivers and health‐care and welfare professionals. Various aspects of collaboration and communication between all stakeholders were discussed. Interviews were transcribed and analysed using a thematic approach. Results: Six main themes emerged: causes of malnutrition, knowledge and awareness, recognition and diagnosis of malnutrition, communication, accountability and food preparation and supply. Physical and social aspects were recognized as important risk factors for malnutrition. Knowledge and awareness regarding malnutrition were acknowledged as being insufficient among all involved. This may impair timely recognition and diagnosis. Responsibility for nutritional care and its communication to other disciplines are low. Food preparation and supply in hospitals, rehabilitation centres and home care are below expected standards. Conclusion: Many stakeholders are involved in nutritional care of OA, and lack of communication and collaboration hinders continuity of nutritional care over health‐care settings. Lack of knowledge is an important risk factor. Establishing one coordinator of nutritional care is suggested to improve collaboration and communication across health‐care settings. [ABSTRACT FROM AUTHOR]

Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person‐centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP‐)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP‐module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi‐structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the person‐centredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer‐to‐peer sessions for facilitators help them to interact with diverse students and EBEs. [ABSTRACT FROM AUTHOR]

Background: Despite increasing calls for patient and public involvement in health‐care quality improvement, the question of how patient evaluations can contribute to physician learning and performance assessment has received scant attention. Objective: The objective of this study was to explore, amid calls for patient involvement in quality assurance, patients' perspectives on their role in the evaluation of physician performance and to support physicians' learning and decision making on professional competence. Design: A qualitative study based on semi‐structured interviews. Setting and Participants: The study took place in a secondary care setting in the Netherlands. The authors selected 25 patients from two Dutch hospitals and through the Dutch Lung Foundation, using purposive sampling. Methods: Data were analysed according to the principles of template analysis, based on an a priori coding framework developed from the literature about patient empowerment, feedback and performance assessment. Results: The analysis unearthed three predominant patient perspectives: the proactive perspective, the restrained perspective and the outsider perspective. These perspectives differed in terms of perceived power dynamics within the doctor‐patient relationship, patients' perceived ability, and willingness to provide feedback and evaluate their physician's performance. Patients' perspectives thus affected the role patients envisaged for themselves in evaluating physician performance. Discussion and conclusion: Although not all patients are equally suitable or willing to be involved, patients can play a role in evaluating physician performance and continuing training through formative approaches. To involve patients successfully, it is imperative to distinguish between different patient perspectives and empower patients by ensuring a safe environment for feedback. [ABSTRACT FROM AUTHOR]

Objectives: To analyse the process and impact of confronting multidisciplinary teams (MTs) in primary care with the experiences of frail older patients through mirror meetings (MMs), with the aim of supporting teams to organize care in a more patient‐oriented way. Methods: Process and impact analyses were performed using a mixed‐method approach. MMs were held with 14 frail older patients and four MTs comprising 23 health‐care professionals (HCPs) in primary care in the Netherlands. Results: Mirror meetings were feasible for frail older people living at home, although their recruitment was time‐consuming. Interaction between the patients was scarce, but they valued the opportunity to share their stories. HCPs preferred MMs overwritten reports about patient experiences. An impact analysis revealed four dominant professional areas for improvement: improve alignment with patient goals, improved communication with patients both orally and in writing, developing new pathways to connect with informal caregivers and an increased understanding that most HCPs are relative strangers to their patients. Conclusions: Mirror meetings are a relatively simple and promising method for exploring the ways in which frail older patients experience care. Practice implications: Given the right conditions, MMs could result in valuable processes to enable MTs to improve their working methods. [ABSTRACT FROM AUTHOR]

Background: The use of patient‐reported outcomes measures (PROMs), such as quality of life or symptoms like pain or fatigue, is increasingly embraced within patient‐centred care and shared decision making. Objectives: To investigate: (a) how patients and health professionals think about using PROMs during routine medical consultations; (b) for which purpose(s), patients and health professionals want to use PROMs during those consultations; and (c) how patients interpret PROMs information presented in various formats. People with Parkinson's disease and their health professionals served as case example. Methods: We performed semi‐structured interviews with patients (N = 13) and professionals (N = 7 neurologists; N = 7 physiotherapists). We also used a survey in which patients (N = 115) were shown six figures displaying different information types. Presentation formats of this information varied (line/bar graphs). Interpretation by patients, perceived usefulness of information, attitude towards using information during routine medical consultations and (hypothetical) decisions were assessed. Findings: Patients and professionals were generally positive about using PROMs during medical consultations. Professionals stressed the opportunity to monitor changes in individual PROMs over time. Patients were primarily positive about aggregated PROMs to make treatment decisions. This information was also most often interpreted correctly, especially when presented through a line graph (90.1% correct). Professionals thought patients should take the initiative in discussing PROMs, whereas patients thought professionals should do so. Conclusion/Discussion: When used in routine medical consultations, PROMs seem to have potential to support shared decision making and facilitate patient‐professional communication. However, training seems needed for both patients and professionals to facilitate actual discussion and proper interpretation. [ABSTRACT FROM AUTHOR]

Objective: To gain insight into how communication vulnerable people and health‐care professionals experience the communication in dialogue conversations, and how they adjust their conversation using augmentative and alternative communication (AAC) or other communication strategies. Methods: Communication vulnerable clients and health‐care professionals in a long‐term care institution were observed during a dialogue conversation (n = 11) and subsequently interviewed (n = 22) about their experiences with the conversation. The clients had various communication difficulties due to different underlying aetiologies, such as acquired brain injury or learning disorder. Results from the observations and interviews were analysed using conventional content analysis. Results: Seven key themes emerged regarding the experiences of clients and professionals: clients blame themselves for miscommunications; the relevance of both parties preparing the conversation; a quiet and familiar environment benefitting communication; giving clients enough time; the importance and complexity of nonverbal communication; the need to tailor communication to the client; prejudices and inexperience regarding AAC. The observations showed that some professionals had difficulties using appropriate communication strategies and all professionals relied mostly on verbal or nonverbal communication strategies. Conclusion: Professionals were aware of the importance of preparation, sufficient time, a suitable environment and considering nonverbal communication in dialogue conversations. However, they struggled with adequate use of communication strategies, such as verbal communication and AAC. There is a lack of knowledge about AAC, and professionals and clients need to be informed about the potential of AAC and how this can help them achieve equal participation in dialogue conversations in addition to other communication strategies. [ABSTRACT FROM AUTHOR]

Abstract: Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick‐off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor‐made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers. [ABSTRACT FROM AUTHOR]

Abstract: Background: To meet the challenge of multimorbidity in decision making, a switch from a disease‐oriented to a goal‐oriented approach could be beneficial for patients and clinicians. More insight about the concept and the implementation of this approach in clinical practice is needed. Objective: This study aimed to develop conceptual descriptions of goal‐oriented care by examining the perspectives of general practitioners (GPs) and clinical geriatricians (CGs), and how the concept relates to collaborative communication and shared decision making with elderly patients with multimorbidity. Method: Qualitative interviews with GPs and CGs were conducted and analyzed using thematic analysis. Results: Clinicians distinguished disease‐ or symptom‐specific goals, functional goals and a new type of goals, which we labelled as fundamental goals. “Fundamental goals” are goals specifying patient's priorities in life, related to their values and core relationships. These fundamental goals can be considered implicitly or explicitly in decision making or can be ignored. Reasons to explicate goals are the potential mismatch between medical standards and patient preferences and the need to know individual patient values in case of multimorbidity, including the management in acute situations. Conclusion: Based on the perspectives of clinicians, we expanded the concept of goal‐oriented care by identifying a three‐level goal hierarchy. This model could facilitate collaborative goal‐setting for patients with multiple long‐term conditions in clinical practice. Future research is needed to refine and validate this model and to provide specific guidance for medical training and practice. [ABSTRACT FROM AUTHOR]

Background Decision aids can be used to support shared decision making ( SDM). A patient-oriented treatment decision aid ( DA) was developed for type 2 diabetes but its use by general practice staff appeared to be limited. Objectives To explore views of practice staff towards SDM and the DA. Design A mixed-methods study within the Dutch PORTDA-diab trial. Setting and participants Included were 17 practices with staff members who were responsible for routine diabetes care and had worked with the DA, and 209 of their patients. Methods Interviews were conducted focusing on applicability, usefulness and feasibility of the DA. Interviews were tape-recorded, transcribed verbatim and subjected to content analysis for identifying and classifying views. Patient-reported data about the use of the DA were collected. Associations between specific views and use of the DA were tested using Pearson point-biserial correlation. Results The majority of practice staff expressed positive views towards SDM, which was associated with making more use of the DA. Most of the staff expressed that the DA stimulated a two-way conversation. By using the DA, several became aware of their paternalistic approach. Some staff experienced a conflict with the content of the DA, which was associated with making less use of the DA. Conclusions The DA was considered useful by practice staff to support SDM. A positive view towards SDM was a facilitator, whereas experiencing a conflict with the content of the DA was a barrier for making use of the DA. [ABSTRACT FROM AUTHOR]

Background Audit and feedback on professional practice and health care outcomes are the most often used interventions to change behaviour of professionals and improve quality of health care. However, limited information is available regarding preferred feedback for patients, professionals and health insurers. Objective Investigate the (differences in) preferences of receiving feedback between stakeholders, using the Dutch Head and Neck Audit as an example. Methods A total of 37 patients, medical specialists, allied health professionals and health insurers were interviewed using semi-structured interviews. Questions focussed on: 'Why,' 'On what aspects' and 'How' do you prefer to receive feedback on professional practice and health care outcomes? Results All stakeholders mentioned that feedback can improve health care by creating awareness, enabling self-reflection and reflection on peers or colleagues, and by benchmarking to others. Patients prefer feedback on the actual professional practice that matches the health care received, whereas medical specialists and health insurers are interested mainly in health care outcomes. All stakeholders largely prefer a bar graph. Patients prefer a pie chart for patient-reported outcomes and experiences, while Kaplan-Meier survival curves are preferred by medical specialists. Feedback should be simple with firstly an overview, and 1-4 times a year sent by e-mail. Finally, patients and health professionals are cautious with regard to transparency of audit data. Conclusions This exploratory study shows how feedback preferences differ between stakeholders. Therefore, tailored reports are recommended. Using this information, effects of audit and feedback can be improved by adapting the feedback format and contents to the preferences of stakeholders. [ABSTRACT FROM AUTHOR]

Background Patient-reported outcome measures ( PROMs) are increasingly used to establish the value of health care. In order to reflect value, PROMs should measure outcomes that matter to patients. However, patients are not always involved in the development of PROMs. This study therefore aimed to investigate whether PROMs, which were developed without patient involvement, are relevant to patients and whether the level of importance allocated towards aspects of these PROMs varies between patient groups. Methods All patients from 20 Dutch hospitals undergoing hip or knee surgery in 2014 were invited to a PROMs survey. Participants were asked to rate the importance of each of the items in the HOOS-Physical Function Short form or the KOOS-Physical Function Short form, the EQ-5D and the NRS pain. Results Most outcomes were considered important. However, 77.7% of hip surgery patients rated being able to run as unimportant. Being able to kneel (32.7%) or squat (39.6%) was not important to a considerable minority of knee surgery patients. Pain, especially during rest, was considered very important by both hip (68.2%) and knee (66.5%) surgery patients. Patients who were older, male, experienced overall bad health and psychological health considered many items from the PROMs less important than other patients. Discussion Patients differ in what they consider important. Health-care professionals should explore patients' preferences and discuss which treatment options best fit patients' preferences. Additionally, if PROMs are used in performance measurement, further research is needed to look at whether and how variation in patient preferences can be taken into account. [ABSTRACT FROM AUTHOR]

Background Evaluation of patients' health care experiences is central to measuring patient-centred care. However, different instruments tend to be used at the hospital or departmental level but rarely both, leading to a lack of standardization of patient experience measures. Objective To validate the Consumer Quality Index (CQI) Inpatient Hospital Care for use on both department and hospital levels. Design Using cross-sectional observational data, we investigated the internal validity of the questionnaire using confirmatory factor analyses ( CFA), and the generalizability of the questionnaire for use at the department and hospital levels using generalizability theory. Setting and participants 22924 adults hospitalized for ≥24 hours between 1 January 2013 and 31 December 2014 in 23 Dutch hospitals (515 department evaluations). Main variable CQI Inpatient Hospital Care questionnaire. Results CFA results showed a good fit on individual level ( CFI=0.96, TLI=0.95, RMSEA=0.04), which was comparable between specialties. When scores were aggregated to the department level, the fit was less desirable ( CFI=0.83, TLI=0.81, RMSEA=0.06), and there was a significant overlap between communication with doctors and explanation of treatment subscales. Departments and hospitals explained ≤5% of total variance in subscale scores. In total, 4-8 departments and 50 respondents per department are needed to reliably evaluate subscales rated on a 4-point scale, and 10 departments with 100-150 respondents per department for binary subscales. Discussion and conclusions The CQI Inpatient Hospital Care is a valid and reliable questionnaire to evaluate inpatient experiences in Dutch hospitals provided sufficient sampling is done. Results can facilitate meaningful comparisons and guide quality improvement activities in individual departments and hospitals. [ABSTRACT FROM AUTHOR]

Objective About 20% of patients with type 2 diabetes achieve all their treatment targets. Shared decision making ( SDM) using a support aid based on the 5-years results of the ADDITION study on multifactorial treatment, could increase this proportion. Research design and methods Cluster-randomized trial in 35 former ADDITION primary care practices. Practices were randomized to SDM or care as usual (1:1). Both ADDITION and non- ADDITION type 2 diabetes patients, 60-80 years, known with diabetes for 8-12 years, were included. In the intervention group, patients were presented evidence about the relationship between treatment intensity and cardiovascular events. They chose intensive or less intensive treatment and prioritized their targets. After 1 year priorities could be rearranged. Follow-up: 24 months. Intention-to-treat analysis. Main outcome measure: proportion of patients that achieved all three treatment targets. Results At baseline 26.4% in the SDM group (n=72) had already achieved all three treatment goals ( CG: 23.5%, n=81). In the SDM group 44 patients chose intensive treatment, 25 continued their former less intensive treatment and three people switched from the more to the less intensive protocol. After 24 months 31.8% of the patients in the SDM group achieved all three treatment targets ( CG: 25.3%), RR 1.26 (95% CI 0.81-1.95). Mean systolic blood pressure decreased in the SDM group (−5.4 mm Hg, P<.01), mean HbA1c and total cholesterol did not change. Conclusions Despite an already high baseline level of diabetes care, we found strong indications that SDM on both intensity of treatment and prioritizing treatment goals further improved outcomes. [ABSTRACT FROM AUTHOR]

Background Disease risk calculators are increasingly web-based, but previous studies have shown that risk information often poses problems for lay users. Objective To examine how lay people understand the result derived from an online cardiometabolic risk calculator. Design A qualitative study was performed, using the risk calculator in the Dutch National Prevention Program for cardiometabolic diseases. The study consisted of three parts: (i) attention: completion of the risk calculator while an eye tracker registered eye movements; (ii) recall: completion of a recall task; and (iii) interpretation: participation in a semi-structured interview. Setting and participants We recruited people from the target population through an advertisement in a local newspaper; 16 people participated in the study, which took place in our university laboratory. Results Eye-tracking data showed that participants looked most extensively at numerical risk information. Percentages were recalled well, whereas natural frequencies and verbal labels were remembered less well. Five qualitative themes were derived from the interview data: (i) numerical information does not really sink in; (ii) the verbal categorical label made no real impact on people; (iii) people relied heavily on existing knowledge and beliefs; (iv) people zoomed in on risk factors, especially family history of diseases; and (v) people often compared their situation to that of their peers. Discussion and conclusion Although people paid attention to and recalled the risk information to a certain extent, they seemed to have difficulty in properly using this information for interpreting their risk. [ABSTRACT FROM AUTHOR]

Background The number of people with multiple chronic conditions increases as a result of ageing. To deal with the complex health-care needs of these patients, it is important that health-care professionals collaborate in interprofessional teams. To deliver patient-centred care, it is often recommended to include the patient as a member of the team. Objective To gain more insight into how health-care professionals and patients, who are used to participate in interprofessional team meetings, experience and organize patient participation in the team meetings. Methods A qualitative study including observations of meetings (n=8), followed by semi-structured interviews with participating health-care professionals (n=8), patients and/or relatives (n=11). Professionals and patients were asked about their experiences of patient participation immediately after the team meetings. Results from both observations and interviews were analysed using content analysis. Results The findings show a variety of influencing factors related to patient participation that can be divided into five categories: (i) structure and task distribution, (ii) group composition, (iii) relationship between professionals and patients or relatives, (iv) patients' characteristics and (v) the purpose of the meeting. Conclusion Patient participation during team meetings was appreciated by professionals and patients. A tailored approach to patient involvement during team meetings is preferable. When considering the presence of patients in team meetings, it is recommended to pay attention to patients' willingness and ability to participate, and the necessary information shared before the meeting. Participating patients seem to appreciate support and preparation for the meeting. [ABSTRACT FROM AUTHOR]

Background: Novel population‐based integrated care services are being developed to adequately serve the growing number of elderly people. Suitable, reliable and valid measurement instruments are needed to evaluate the quality of care delivered. Objective: To develop a measure to evaluate the quality of integrated care from the perspective of elderly people, the Patient Assessment of Integrated Elderly Care (PAIEC), and then to assess its psychometric properties. Methods/Design: After the Patient Assessment of Chronic Illness Care was adapted to the PAIEC, a cross‐sectional postal‐survey study was performed among 223 elderly people who received integrated elderly care and support. We assessed the factor structure, internal consistency, known groups and divergent validity using robust nonparametric tests. Results: Mean age of participants was 83 years (standard deviation 4.7), and 69% was female. The original five‐factor model was rejected; a good fit was found for a three‐factor model, when excluding the item on patients' satisfaction with care. The PAIEC and its subscales showed good internal consistency (ordinal alphas > 0.90). Known‐groups validity was supported regarding number of medications, prevalence of chronic conditions and home care received. No differences were found between groups based on sociodemographic aspects. Divergent validity was supported by low correlations (Spearman's rank correlation coefficients < 0.30) between PAIEC scales and measures of quality of life, complexity of care needs and frailty. Conclusion: The PAIEC seems to have considerable potential as a reliable and valid measurement instrument that evaluates quality of integrated care and support from the perspective of elderly people. [ABSTRACT FROM AUTHOR]

Background: Measuring patients’ experiences to determine health ‐ care performance and quality of care from their perspective can provide valuable evidence for international improvements in the quality of care. We compare patients’ experiences in Accident & Emergency departments (A&E) in England and the Netherlands and discuss the usefulness of this comparison. Methods: A cross ‐ sectional survey was conducted among patients attending A&Es aged 18 years and older. In England, 134 A&Es were surveyed. In the Netherlands, nine hospitals participated in the study. Main outcome measures were patients’ experiences represented by six domain scores aggregated on the country level or on the A&E level. Results: In England, 43 892 completed questionnaires were received (40%). In the Netherlands, 1865 completed questionnaires were received (42%). Three of six domain scores were significantly higher for patients in the Netherlands: ‘waiting time’ [mean scores of 73.8 (NL) versus 67.2 (ENG)], ‘doctors and nurses’ [mean scores of 85.7 (NL) versus 80.6 (ENG)] and ‘your care and treatment’ [mean scores of 82.6 (NL) and 80.2 (ENG)]. The variance among the English A&Es was large. The best and worst practices on five domains were English. Conclusions: The mean quality of care in the A&E appeared to be better in the Netherlands on three domains, but the best practices were English A&Es. The within ‐ country differences between A&Es were much larger than differences between countries. Healthcare performance in the A&E can be compared between countries by surveying patients’ experiences, and there seems much to learn across A&Es both within and among countries. [ABSTRACT FROM AUTHOR]

Background: Various north ‐ western European health ‐ care systems encourage patients to make an active choice of health ‐ care provider. This study explores, qualitatively, patients' hospital selection processes and provides insight into the reasons why patients do or do not make active choices. Methods: Semi ‐ structured individual interviews were conducted with 142 patients in two departments of three Dutch hospitals. Interviews were recorded, transcribed and analysed in accordance with the grounded theory approach. Results: Three levels of choice activation were identified – passive, semi ‐ active and active. The majority of the patients, however, visited the default hospital without having used quality information or considered alternatives. Various factors relating to patient, provider and health ‐ care system characteristics were identified that influenced patients' level of choice activation. On the whole, the patients interviewed could be classified into five types with regard to how they chose, or ‘ended up at’ a hospital. These types varied from patients who did not have a choice to patients who made an active choice. Conclusions: A large variation exists in the way patients choose a hospital. However, most patients tend to visit the default without being concerned about choice. Generally, they do not see any reason to choose another hospital. In addition, barriers exist to making choices. The idea of a patient who actively makes a choice originates from neoclassical microeconomic theory. However, policy makers may try in vain to bring principles originating from this theory into health care. Even so, patients do value the opportunity of attending ‘their’ own hospital. [ABSTRACT FROM AUTHOR]

Background: Governments in several countries are facing problems concerning the accountability of regulators in health care. Questions have been raised about how patients' complaints should be valued in the regulatory process. However, it is not known what patients who made complaints expect to achieve in the process of health‐care quality regulation. Objective: To assess expectations and experiences of patients who complained to the regulator. Design: Interviews were conducted with 11 people, and a questionnaire was submitted to 343 people who complained to the Dutch Health‐care Inspectorate. The Inspectorate handled 92 of those complaints. This decision was based on the idea that the Inspectorate should only deal with complaints that relate to ‘structural and severe’ problems. Results: The response rate was 54%. Self‐reported severity of physical injury of complaints that were not handled was significantly lower than of complaints that were. Most respondents felt that their complaint indicated a structural and severe problem that the Inspectorate should act upon. The desire for penalties or personal satisfaction played a lesser role. Only a minority felt that their complaint had led to improvements in health‐care quality. Conclusions: Patients and the regulator share a common goal: improving health‐care quality. However, patients' perceptions of the complaints' relevance differ from the regulator's perceptions. Regulators should favour more responsive approaches, going beyond assessing against exclusively clinical standards to identify the range of social problems associated with complaints about health care. Long‐term learning commitment through public participation mechanisms can enhance accountability and improve the detection of problems in health care. [ABSTRACT FROM AUTHOR]

Background and objective: Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample: The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method: This study had a descriptive design using qualitative methods: 18 in‐depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion: The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short‐term solutions to practical problems, while professionals perceived great benefits in long‐term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long‐term support, to build a solid basis for pursuing meaningful involvement in the entire decision‐making process. [ABSTRACT FROM AUTHOR]

The article focuses on the role of general practitioner (GP) regarding the use of publicly available quality information when selecting health-care provider. Topics mentioned include the health care quality management, the social aspects of public health, and the patients participation. Also mentioned are the public health management and the decision-making in GP.

Background: In patient‐centred care, professionals should recognize their patient's needs and adapt their communication accordingly. Studies into patients’ communication needs suggest priorities vary depending on sociodemographic characteristics, and type and severity of the complaints. However, evidence lacks on priorities in the communication needs of adolescents in psychosocial care and their parents. Objective: To assess adolescents’ and parents’ importance ratings concerning affective communication, information provision, shared decision‐making, interprofessional communication and the degree to which client and care characteristics determine these. Methods: Adolescents aged 12–18 (n = 403) and one of their parents (n = 403) rated the importance of communication before the psychosocial care process started. Multivariable logistic regression analysis was applied to determine which characteristics were associated with the 25% lowest importance ratings for communication aspects. Results: Adolescents and parents considered affective communication to be the most important, with shared decision‐making the least important. For adolescents, lower importance ratings were associated with dissatisfaction with prior care (OR 1.8), negative expectations (ORs 1.9–2.4), emotional problems (ORs 0.2–0.5) and low prosocial behaviour skills (ORs 2.0). For parents, low education (ORs 1.7–1.8), negative expectations (OR 0.4), adolescent's hyperactivity/inattention (ORs 0.4–0.5) and low prosocial behaviour skills (ORs 1.8–2.6) determined lower importance ratings. Conclusions: Affective communication has highest priority for adolescents and their parents. Client and care characteristics are associated with client priorities in communication. Being attentive to clients’ educational level, previous care experiences, current expectations and specific problem types might help professionals to adapt better to their clients’ communication needs. [ABSTRACT FROM AUTHOR]

The article presents the study on the perceived efficacy and barriers in consultation participation, interest in communication support, and the correlation of perceived efficacy and efficacy among chronic patients. Methods for gathering data on the barriers to communication support and participation through Perceived Efficacy in Patient-Provider Interaction scale was provided. Results were outlined and conclude the confidence on medical interaction among chronically ill patients.

The article presents a study which aims to investigate the children's experience and perspectives on the quality of hospital care in Netherlands. The study used a qualitative study with key methods such as participatory data collection, photovoice, and children's letter writing to the hospital executives.

The article presents a study which aims to explore the use and consequences of personal health community (PHC) in the health care setting. Among the key focus of the study include the quality of health care on patients wih Parkinson's disease and women with infertility problems. Results conclude that PHC is a promising tool in improving the healthcare and patient's experience.

The article presents a study which aims to listen to peoples' perspectives on what constitutes a good physician communication. The researchers detail the study design using videotaped standardized medical encounters to discuss their preferences in gender-specific focus groups. It implies that the physicians' affective attitude is most desired and appreciated by patients.

The article presents the study that assesses the attitudes and knowledge of Faecal Immunochemical Test (FIT) users towards colorectal cancer (CRC) screening in the Netherlands. The topics discussed include the importance of mass CRC screening programmes in declining disease mortality and morbidity and the criteria set by the National Screening Committee in evaluating the screening's appropriateness.

The article features the research that evaluates the effectiveness of gynaecological patients involvement in the development of guidelines about the resumption of work-related activitivities after surgical operations in the Netherlands. The topics discussed include the reasons of the Obstetrics and Gynaecology and the EMGO Institute for Health and Care Research in developing clinical guidelines and the parallel trajectories of guideline development procedure.

Background: Patients’ experiences are an indicator of health‐care performance in the accident and emergency department (A&E). The Consumer Quality Index for the Accident and Emergency department (CQI A&E), a questionnaire to assess the quality of care as experienced by patients, was investigated. The internal consistency, construct validity and discriminative capacity of the questionnaire were examined. Methods: In the Netherlands, twenty‐one A&Es participated in a cross‐sectional survey, covering 4883 patients. The questionnaire consisted of 78 questions. Principal components analysis determined underlying domains. Internal consistency was determined by Cronbach's alpha coefficients, construct validity by Pearson's correlation coefficients and the discriminative capacity by intraclass correlation coefficients and reliability of A&E‐level mean scores (G‐coefficient). Results: Seven quality domains emerged from the principal components analysis: information before treatment, timeliness, attitude of health‐care professionals, professionalism of received care, information during treatment, environment and facilities, and discharge management. Domains were internally consistent (range: 0.67–0.84). Five domains and the ‘global quality rating’ had the capacity to discriminate among A&Es (significant intraclass correlation coefficient). Four domains and the ‘global quality rating’ were close to or above the threshold for reliably demonstrating differences among A&Es. The patients’ experiences score on the domain timeliness showed the largest range between the worst‐ and best‐performing A&E. Conclusions: The CQI A&E is a validated survey to measure health‐care performance in the A&E from patients’ perspective. Five domains regarding quality of care aspects and the ‘global quality rating’ had the capacity to discriminate among A&Es. [ABSTRACT FROM AUTHOR]

Background: Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health‐care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health‐care institutions is overlooked in research on patient/citizen participation in health care. Objective: This research addressed the following question: What are the (political) expectations for increasing citizen participation in health‐care regulation and how do these compare to regulators' expectations and experiences in practice? Design: Because of the largely explorative nature of this study, we used qualitative methods (document and web analysis, focus groups and interviews) to answer this question. Results: Our study shows that inspectors already have experience with participatory formats that lead to important information. There are three areas where the IGZ is currently increasing citizen participation: (i) providing individuals with information about inspectorate processes and activities, (ii) including patients as sources of information, and (iii) formally reviewing how citizen participation is ensured by health‐care institutions. In situations where the patient has the clearest overview of the whole care trajectory, intensive methods of participation deliver valuable information. Conclusions: It is important to target participation activities and to capitalize on existing opportunities and activities, rather than creating participation activities for the sake of participation. In this regard, further research on the effectiveness and efficacy of different participatory strategies is necessary. [ABSTRACT FROM AUTHOR]

Aims It has long been held that high-quality care has both technical and interpersonal aspects. The nature and strength of any association between both aspects remain poorly explored. This study investigated the associations between diabetes patients' reports of receiving recommended care (as measures of technical quality) and their experience and ratings (as measures of interpersonal care). Methods Using data from a cross section of 3096 patients with diabetes nested within 24 diabetes-care-networks, we conducted multilevel regression analysis of the relationships between nine indicators of receiving care recommended in practice guidelines and: six scales of patient experience and global ratings of general practitioner, nurses, and overall diabetes care. Results On average, reporting having received recommended care was associated with reporting better patient experience and ratings. The extent and frequencies of these associations varied across the different care processes. Receiving foot examination, physical activity advice, smoking status check, eye examination, and HbA1c testing, but not nutritional advice, urine, cholesterol or blood pressure checks, were statistically associated with better patient experience and global ratings. Those who received HbA1c testing rated their overall care 1.002 points higher (95% confidence interval: 0.726-1.278) on a scale of 0-10 than those who did not. Conclusions Higher self-reported technical quality of care in diabetes appears to be frequently but not always associated with better experiences and ratings. It is possible that the former leads to the latter and/or that both share a common cause within providers. Both care aspects do not seem interchangeable during performance assessment. [ABSTRACT FROM AUTHOR]