While screening uptake is variable, many individuals feel they 'ought' to participate in screening programmes to aid the detection of conditions amenable to early treatment. Those not taking part in screening are often presented as either hindered by practical or social barriers or personally at fault. Why some people choose not to participate receives less consideration. We explored screening nonparticipation by examining the accounts of participants who chose not to participate in screening offered by a national research trial of atrial fibrillation (AF) screening in England (SAFER: Screening for Atrial Fibrillation with ECG to Reduce stroke). AF is a heart arrhythmia that increases in prevalence with age and increases the risk of stroke. Systematic screening for AF is not a nationally adopted programme within the United Kingdom; it provides a unique opportunity to explore screening nonparticipation outside of the norms and values attached to existing population-based screening programmes. We interviewed people aged over 65 (n = 50) who declined an invitation from SAFER and analysed their accounts thematically. Beyond practical reasons for nonparticipation, interviewees challenged the utility of identifying and managing AF earlier. Many questioned the benefits of screening at their age. The trial's presentation of the screening as research made it feel voluntary-something they could legitimately decline. Nonparticipants were not resistant to engaging in health-promoting behaviours, uninformed about screening or unsupportive of its potential benefits. Instead, their consideration of the perceived necessity, legitimacyand utility of this screening shaped their decision not to take part. The SAFER programme is guided by four patient and carer representatives. The representatives are embedded within the team (e.g.,one is a co-applicant, another sits on the programme steering committee) and by participating in regular meetings advise on all aspects of the design, management and delivery of the programme, including engaging with interpreting and disseminating the findings. For the qualitative workstream, we established a supplementary patient and public involvement group with whom we regularly consult about research design questions.

This study aimed to assess patients' preferences of nonsurgical treatments for chronic low back pain (CLBP). We conducted a discrete choice experiment (DCE) in Quebec, Canada, in 2018. Seven attributes were included: treatment modality, pain reduction, the onset of treatment efficacy, duration effectiveness, difficulties with daily activities, sleep problems,and knowledge of the patient'sbody and pain location. Treatment modalities were corticosteroid injections, supervised body-mind physical activities, supervised sports physical activities, physical manipulations, self-management courses,and psychotherapy. Utility levels were estimated using a logit model, a latent class modeland a Bayesian hierarchical model. Analyses were conducted on individuals. According to the Bayesian hierarchical model, the conditional relative importance weights of attributes were as follows: (1)treatment modality (34.79%), (2) pain reduction (18.73%), (3) difficulties with daily activities (11.71%), (4) duration effectiveness (10.06%), (5) sleep problems (10.05%), (6) onset of treatment efficacy (8.60%)and (7) knowledge of the patient's body and pain location (6.06%). According to the latent class model that found six classes of respondents with different behaviours (using Akaike and Bayesian criteria), the treatment modality was the most important attribute for all classes, except for class 4 for which pain reduction was the most important. In addition, classes 2 and 5 refused corticosteroid injections, while psychotherapy was preferred only in class 3. Given the preference heterogeneity found in the analysis, it is important that patient preferences are discussed and considered by the physicians. This will help to improve the patient care pathway in a context of a patient-centred model for a disease with growing prevalence. A small group of patients was involved in the conception, designand interpretation of data. Participants in the DCEwere all CLBP patients.

Cover Caption: The cover image is based on the Review Article The Ecology of Engagement: Fostering cooperative efforts in health with patients and communities by Antoine Boivin MD, PhD et al. https://doi.org/10.1111/hex.13571.

BackgroundIn 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.MethodsFrom 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.ResultsAlmost 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.ConclusionsThis 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 ContributionNo 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.

IntroductionHealthcare facilities adopted restrictive visitor policies as a result of the COVID‐19 (COVID) pandemic. Though these measures were necessary to promote the safety of patients, families and healthcare providers, it led to isolation and loneliness amongst acute care inpatients that can undermine patient rehabilitation and recovery. The study objectives were to (1) explore how infection prevention and control (IP&C) measures impacted stakeholders' perceptions of care quality and interactions with others and (2) investigate how these experiences and perceptions varied across stakeholder groups and care settings.MethodsA qualitative descriptive study was conducted. Patients and their families from an inpatient COVID rehabilitation hospital and healthcare providers from an acute or rehabilitation COVID hospital were interviewed between August 2020 and February 2021.ResultsA total of 10 patients, 5 family members and 12 healthcare providers were interviewed. Four major themes were identified: (1) IP&C measures challenged the psychosocial health of all stakeholders across care settings; (2): IP&C measures precipitated a need for greater relational care from HCPs; (3) infection prevention tenets perpetuated COVID‐related stigma that stakeholders experienced across care settings; and (4) technology was used to facilitate human connection when IP&C limited physical presence.ConclusionIP&C measures challenged psychosocial health and maintenance of vital human connections. Loneliness and isolation were felt by all stakeholders due to physical distancing and COVID‐related stigma. Some isolation was mitigated by the relational care provided by HCPs and technological innovations used. The findings of the study underscore the need to balance safety with psychosocial well‐being across care settings and beyond the patient–provider dyad.Patient and Public ContributionThis study was informed by the Patient‐Oriented Research Agenda and developed through consultations with patients and family caregivers to identify priority areas for rehabilitation research. Priority areas identified that informed the current study were (1) the need to focus on the psychosocial aspects of recovery from illness and injury and (2) the importance of exploring patients' recovery experiences and needs across the continuum of care. The study protocol, ethics submission, analysis and manuscript preparation were all informed by healthcare providers with lived experience of working in COVID care settings.

BackgroundProcesses of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of ‘nothing about us without us’ in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting.MethodsAs part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change.DiscussionOur reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI.ConclusionThese learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future.

AimWe reflect on our experiences of coproducing a redesigned, COVID‐safe priority‐setting activity at a time of shifting priorities and upheaval to gain insight into good practice.MethodThe project team documented the experience of adapting to COVID‐19 through the reflective project evaluation. We reflect on how COVID disrupted coproduction through radically shifting personal and professional priorities and the implications for good practice.ResultsOur experiences highlighted the role of agility, management capacity, social capital and power in coproduction.ConclusionsCOVID‐19 disrupted and enabled coproduction, compounding tensions and serving as the basis to transcend them. The pandemic created new demands on institutions that initially prompted withdrawal to established power, and team members which redefined them in relation to each other. Shifting priorities and demands forced team members into new, and out of former, roles coming into conflict with enduring power dynamics articulating constructs of expertise and authority in the institutional structure. We consider how the tensions found expression: as governance and human resource concerns, problems with authorizing payments, challenges in institutionally accommodating community researchers and the exclusion of some from participation.