Adapting patient and public involvement in patient‐oriented methods research: Reflections in a Canadian setting during COVID‐19

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.     

Ensuring patient and public involvement in the transition to AI‐assisted mental health care: A systematic scoping review and agenda for design justice

BackgroundMachine‐learning algorithms and big data analytics, popularly known as ‘artificial intelligence’ (AI), are being developed and taken up globally. Patient and public involvement (PPI) in the transition to AI‐assisted health care is essential for design justice based on diverse patient needs.ObjectiveTo inform the future development of PPI in AI‐assisted health care by exploring public engagement in the conceptualization, design, development, testing, implementation, use and evaluation of AI technologies for mental health.MethodsSystematic scoping review drawing on design justice principles, and (i) structured searches of Web of Science (all databases) and Ovid (MEDLINE, PsycINFO, Global Health and Embase); (ii) handsearching (reference and citation tracking); (iii) grey literature; and (iv) inductive thematic analysis, tested at a workshop with health researchers.ResultsThe review identified 144 articles that met inclusion criteria. Three main themes reflect the challenges and opportunities associated with PPI in AI‐assisted mental health care: (a) applications of AI technologies in mental health care; (b) ethics of public engagement in AI‐assisted care; and (c) public engagement in the planning, development, implementation, evaluation and diffusion of AI technologies.ConclusionThe new data‐rich health landscape creates multiple ethical issues and opportunities for the development of PPI in relation to AI technologies. Further research is needed to understand effective modes of public engagement in the context of AI technologies, to examine pressing ethical and safety issues and to develop new methods of PPI at every stage, from concept design to the final review of technology in practice. Principles of design justice can guide this agenda.     

Reimagining consumer involvement: Resilient system indicators in the COVID‐19 pandemic response in New South Wales,Australia

BackgroundReflections on the response to the COVID‐19 pandemic often evoke the concept of ‘resilience’ to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia.MethodsIn‐depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self‐identified consumer leaders, who worked together in a COVID‐19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities.ResultsThe pause in consumer engagement to support health service decision‐making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer‐led research and guidelines on pandemic‐related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas.ConclusionThe response to the COVID‐19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self‐organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system.Patient or Public ContributionThis project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.     

Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

BackgroundIn 2020, the long‐lasting effects of the Covid‐19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life‐changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid.MethodsUnlike any previous pandemic in history, online Covid communities and ‘citizen science’ have played a leading role in advancing our understanding of Long Covid. As patient‐led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19‐recovery.org at the beginning of the Covid‐19 pandemic between April and September 2020.ResultsThe overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life‐changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option.ConclusionsLong Covid does not easily fit into the dominant evidence‐based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship.Patient ContributionThe research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.     

Effects of the COVID‐19 Emergency and National Lockdown on Italian Citizens’ Economic Concerns,Government Trust,and Health Engagement: Evidence From a Two‐Wave Panel Study

Policy Points

• Preventive measures such as the national lockdown in Italy have been effective in slowing the spread of COVID‐19. However, they also had psychological and economic impacts on people’s lives, which should not be neglected as they may reduce citizens’ trust and compliance with future health mandates.
• Engaging citizens in their own health management and in the collaboration with health care professionals and authorities via the adoption of a collaborative approach to health policy development is fundamental to fostering such measures’ effectiveness.
• Psychosocial analysis of citizens’ concerns and emotional reactions to preventive policies is important in order to plan personalized health communication campaigns.

ContextBecause of the COVID‐19 pandemic, between February 23 and March 8, 2020, some areas of Italy were declared “red zones,” with citizens asked to stay home and avoid unnecessary interpersonal contacts. Such measures were then extended, between March 10 and May 4, 2020, to the whole country. However, compliance with such behaviors had an important impact on citizens’ personal, psychological, and economic well‐being. This could result in reduced trust in authorities and lowered compliance. Keeping citizens engaged in their own health and in preventive behaviors is thus a key strategy for the success of such measures. This paper presents the results from a study conducted in Italy to monitor levels of people’s health engagement, sentiment, trust in authorities, and perception of risk at two different time points.MethodsTwo independent samples (n = 968 and n = 1,004), weighted to be representative of the adult Italian population, were recruited in two waves corresponding to crucial moments of the Italian COVID‐19 epidemic: between February 28 and March 4 (beginning of “phase 1,” after the first regional lockdowns), and between May 12 and May 18 (beginning of “phase 2,” after the national lockdown was partially dismissed). Respondents were asked to complete an online survey with a series of both validated measures and ad hoc items. A series of t‐tests, general linear models, and contingency tables were carried out to assess if and how our measures changed over time in different social groups.FindingsAlthough sense of self and social responsibility increased between the two waves, and trust toward authorities remained substantially the same, trust in science, consumer sentiment, and health engagement decreased. Our results showed that while both the level of general concern for the emergency and the perceived risk of infection increased between the two waves, in the second wave our participants reported being more concerned for the economic consequences of the pandemic than the health risk.ConclusionsThe potentially disruptive psychological impact of lockdown may hamper citizens’ compliance with, and hence the effectiveness of, behavioral preventive measures. This suggests that preventive measures should be accompanied by collaborative educational plans aimed at promoting people’s health engagement by making citizens feel they are partners in the health preventive endeavor and involved in the development of health policies.     

Reluctant educators and self‐advocates: Older trans adults’ experiences of health‐care services and practitioners in seeking gender‐affirming services

BackgroundTrans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers’ experiences of contemporary health‐care services when seeking to transition medically in later life.ObjectivesQualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life.DesignTrans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach.Setting and participantsThis paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life.ResultsFindings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life.Discussion and conclusionsMessages from this study speak to the importance of improving professionals’ knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity.     

Involvement of adolescent representatives and coresearchers in mental health research: Experiences from a research project

IntroductionIn spite of adolescents'' rights to be involved in decisions that concern their health and life, limited research has been published reporting on their involvement in mental health research. Therefore, we aim to present experiences and reflections based on the involvement of adolescents in mental health research, to describe the collaborative relationship between researchers and coresearchers, including the values that underpin their collaboration.MethodsAn autoethnographic approach was used, combined with group reflections. The process was jointly developed, carried out and analysed by adolescent coresearchers and the project''s lead researcher over a period of 2 years. The article is jointly authored by the researcher and the ten coresearchers.ResultsSix themes were developed to describe our collaborative relationship, resulting in the involvement of adolescents in decisions about research priorities; in planning and carrying out the research; through to analysis, dissemination and communication of results. The themes include: (1) Commitment motivated by altruism, personal interests and a common purpose; (2) Inclusiveness and support to reduce social uncertainty and strengthen collaboration; (3) Reduced power differentials while ensuring clarity of roles and tasks; (4) Diversity in representation to expand the perspectives of ‘the adolescent voice’; (5) Self‐determination—supporting adolescents'' involvement in decision‐making processes; and (6) Flexible and systematic project management. The themes describe the collaboration, the underlying values and motives, the challenges faced and how they were overcome.ConclusionThis self‐reflective process describing a 4‐year collaborative research project resulted in the development of recommendations for involving adolescents in mental health research. The recommendations could potentially contribute to a change of ‘research culture’ to expand the currently limited involvement of adolescents in research.Patient or Public ContributionAdolescents have contributed as coresearchers through all phases of the research project and as coauthors of this article, including planning, participation in the self‐ and group‐reflective processes, analysis and authoring the article.     

More than cost‐effectiveness? Applying a second‐stage filter to improve policy decision making

BackgroundApart from cost‐effectiveness, considerations like equity and acceptability may affect health‐care priority setting. Preferably, priority setting combines evidence evaluation with an appraisal procedure, to elicit and weigh these considerations.ObjectiveTo demonstrate a structured approach for eliciting and evaluating a broad range of assessment criteria, including key stakeholders’ values, aiming to support decision makers in priority setting.MethodsFor a set of cost‐effective substitute interventions for depression care, the appraisal criteria were adopted from the Australian Assessing Cost‐Effectiveness initiative. All substitute interventions were assessed in an appraisal, using focus group discussions and semi‐structured interviews conducted among key stakeholders.ResultsAppraisal of the substitute cost‐effective interventions yielded an overview of considerations and an overall recommendation for decision makers. Two out of the thirteen pairs were deemed acceptable and realistic, that is investment in therapist‐guided and Internet‐based cognitive behavioural therapy instead of cognitive behavioural therapy in mild depression, and investment in combination therapy rather than individual psychotherapy in severe depression. In the remaining substitution pairs, substantive issues affected acceptability. The key issues identified were as follows: workforce capacity, lack of stakeholder support and the need for change in clinicians’ attitude.ConclusionsSystematic identification of stakeholders’ considerations allows decision makers to prioritize among cost‐effective policy options. Moreover, this approach entails an explicit and transparent priority‐setting procedure and provides insights into the intended and unintended consequences of using a certain health technology.Patient contributionPatients were involved in the conduct of the study for instance, by sharing their values regarding considerations relevant for priority setting.     

Linking Data on Constituent Health with Elected Officials’ Opinions: Associations Between Urban Health Disparities and Mayoral Officials’ Beliefs About Health Disparities in Their Cities

Policy Points

• Mayoral officials’ opinions about the existence and fairness of health disparities in their city are positively associated with the magnitude of income‐based life expectancy disparity in their city.
• Associations between mayoral officials’ opinions about health disparities in their city and the magnitude of life expectancy disparity in their city are not moderated by the social or fiscal ideology of mayoral officials or the ideology of their constituents.
• Highly visible and publicized information about mortality disparities, such as that related to COVID‐19 disparities, has potential to elevate elected officials’ perceptions of the severity of health disparities and influence their opinions about the issue.

ContextA substantive body of research has explored what factors influence elected officials’ opinions about health issues. However, no studies have assessed the potential influence of the health of an elected official''s constituents. We assessed whether the magnitude of income‐based life expectancy disparity within a city was associated with the opinions of that city''s mayoral official (i.e., mayor or deputy mayor) about health disparities in their city.MethodsThe independent variable was the magnitude of income‐based life expectancy disparity in US cities. The magnitude was determined by linking 2010‐2015 estimates of life expectancy and median household income for 8,434 census tracts in 224 cities. The dependent variables were mayoral officials’ opinions from a 2016 survey about the existence and fairness of health disparities in their city (n = 224, response rate 30.3%). Multivariable logistic regression was used to adjust for characteristics of mayoral officials (e.g., ideology) and city characteristics.FindingsIn cities in the highest income‐based life expectancy disparity quartile, 50.0% of mayoral officials “strongly agreed” that health disparities existed and 52.7% believed health disparities were “very unfair.” In comparison, among mayoral officials in cities in the lowest disparity quartile 33.9% “strongly agreed” that health disparities existed and 22.2% believed the disparities were “very unfair.” A 1‐year‐larger income‐based life expectancy disparity in a city was associated with 25% higher odds that the city''s mayoral official would “strongly agree” that health disparities existed (odds ratio [OR] = 1.25; P = .04) and twice the odds that the city''s mayoral official would believe that such disparities were “very unfair” (OR = 2.24; P <.001).ConclusionsMayoral officials’ opinions about health disparities in their jurisdictions are generally aligned with, and potentially influenced by, information about the magnitude of income‐based life expectancy disparities among their constituents.     

Stuff you think you can handle as a parent and stuff you can’t’. Understanding parental health‐seeking behaviour when accessing unscheduled care: A qualitative study

BackgroundUnscheduled health care constitutes a significant proportion of health‐care utilization. Parental decision making when accessing unscheduled care for their children is multifaceted and must be better understood to inform policy and practice.DesignNineteen semi‐structured interviews and one focus group (n = 4) with parents of children younger than twelve in Ireland were conducted. Participants had accessed unscheduled care for their children in the past. Data were thematically analysed.ResultsParents accessed unscheduled care for their children after reaching capacity to manage the child''s health themselves. This was informed by factors such as parental experience, perceived urgency and need for reassurance. Parents considered the necessity to access care and situated their health‐seeking behaviour within a framework of ‘appropriateness’. Where parents sought unscheduled care was largely determined by timely access, and inability to secure a general practitioner (GP) appointment often led parents to access other services. Parents expressed a need for more support in navigating unscheduled care options.ConclusionsBetter resources to educate and support parents are required, and structural issues, such as accessibility to GPs, need to be addressed to enable parents to better navigate the unscheduled health system and manage their children''s health. The discourse around ‘appropriate’ and ‘inappropriate’ access to health care has permeated parental decision making when accessing unscheduled health care for their children. What constitutes appropriate access should be examined, and a shift away from this framing of health‐seeking behaviour may be warranted.Patient or Public ContributionThere was no explicit patient or public involvement. All authors hold experience as users of the health system.     

Understanding young adults’ reasons for seeking ‘clinically unnecessary’ urgent and emergency care: A qualitative interview study

BackgroundStudies have identified young adults as more likely to use emergency departments for ‘clinically unnecessary’ problems, with limited similar evidence for emergency ambulance use. Media portrayals depict young adults as motivated by ‘convenience’, but little research has explored the reasons for their help‐seeking behaviour.MethodsQualitative interviews with 16 young adults (18‐30) considered by clinicians to have made unnecessary use of emergency ambulance, emergency department or an urgent GP appointment. Data analysis was informed by interpretive phenomenological analysis.FindingsA number of interrelated factors contributed to participants’ decisions. They were anxious about the seriousness of their symptoms, sometimes exacerbated by reduced coping capacity due to poor mental health or life stresses. They looked to others to facilitate their decision making, who sometimes encouraged urgent contact. They wanted to avoid impact on existing day‐to‐day commitments including work or study. They had strong views about different health services, sometimes based on frustration with lack of resolution of on‐going health problems. Convenience was not identified as a significant factor, although some actions could be interpreted in this light if the context was not considered.ConclusionsYoung adults make ‘clinically unnecessary’ use of urgent and emergency care for more than convenience. Their decisions need to be understood in relation to the complexity of their experience, including lack of confidence in making health‐related decisions, lowered coping capacity and concern to maintain normal daily life.     

The expectations and realities of nutrigenomic testing in australia: A qualitative study

BackgroundConsumer genomic testing for nutrition and wellness, (nutritional genomics), is becoming increasingly popular. Concurrently, health‐care practitioners (HPs) working in private practice (including doctors interested in integrative medicine, private genetic counsellors, pharmacists, dieticians, naturopaths and nutritionists) are involved as test facilitators or interpreters.ObjectiveTo explore Australian consumers’ and HPs’ experiences with nutrigenomic testing.MethodSemi‐structured in‐depth interviews were conducted using predominantly purposive sampling. The two data sets were analysed individually, then combined, using a constant comparative, thematic approach.ResultsOverall, 45 interviews were conducted with consumers (n = 18) and HPs (n = 27). Many of the consumer interviewees experienced chronic ill‐health. Nutrigenomic testing was perceived as empowering and a source of hope for answers. While most made changes to their diet/supplements post‐test, self‐reported health improvements were small. A positive relationship with their HP appeared to minimize disappointment. HPs’ adoption and views of nutrigenomic testing varied. Those enthusiastic about testing saw the possibilities it could offer. However, many felt nutrigenomic testing was not the only ‘tool’ to utilize when offering health care.DiscussionThis research highlights the important role HPs play in consumers’ experiences of nutrigenomics. The varied practice suggests relevant HPs require upskilling in this area to at least support their patients/clients, even if nutrigenomic testing is not part of their practice.Patient or public contributionAdvisory group included patient/public group representatives who informed study design; focus group participants gave feedback on the survey from which consumer interviewees were sourced. This informed the HP data set design. Interviewees from HP data set assisted with snowball sampling.     

Participation preferences of health service users in health care decision‐making regarding rehabilitative care in Germany—A cross‐sectional study

BackgroundInvolving patients and citizens in health care decision‐making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment.ObjectiveThis study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels.MethodsA questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models.ResultsThe response rate was 5.7% (n = 217). At all decision‐making levels, joint decision‐making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision‐making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p = .019).DiscussionParticipants wanted to be equally involved in decision‐making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill—factors associated with increased participation preferences in the literature.ConclusionContrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed.     

Priorities of patients,caregivers and health‐care professionals for health research – A systematic review

BackgroundBased on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance.ObjectiveThis article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used.Search strategyThree electronic databases were searched on 22 May 2018. The search was not limited to any time period or language.Inclusion criteriaThe included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem.Data extraction and synthesisThe 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme.Main resultsThe priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are ‘Treatment’, ‘Patients’ and ‘Health condition’. The distribution of the research priorities varied depending on the health conditions and prioritization methods.Discussion and conclusionsThis review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research.     

Health‐care professionals’ assessment of a person‐centred intervention to empower self‐management and health across chronic illness: Qualitative findings from a process evaluation study

BackgroundPerson‐centred care (PCC) empowers patients to manage their chronic illness and promote their health in accordance with their own beliefs, values and preferences. Drawing on health‐care professional''s (HCP’s) experiences implementing an empowerment‐focused, person‐centred intervention called the Bodyknowledging Program (BKP), we undertook a process evaluation that aimed to assess the impact on patient health and well‐being.MethodsWe used individual in‐depth interviews and semi‐structured focus groups comprising n = 8 interprofessional HCP who facilitated intervention sessions with n = 58 patients situated in Norwegian specialist care sites. Content analysis was used to analyse the data and summarize major themes.ResultsHealth‐care professional interviews revealed four main ways in which the intervention operated in support of health‐related patient outcomes: (i) addressing the whole person; (ii) hope and affirmation; (iii) expanding recovery; and (iv) social support and revitalized relationships. The intervention provided new tools for patients to understand the social, emotional and physical impact of their illness. Health‐care professional reported new insights to facilitate patient engagement and to promote patients’ health.ConclusionsThe Bodyknowledging Program facilitated patient engagement through the promotion of patient‐centred care while developing the patients’ ability to exploit their own resources for effectively managing their health within illness. The process evaluation supported the underlying theoretical basis of the intervention and was suggestive of its potential transferability elsewhere.     

Development and psychometric testing of the patient participation in bedside handover survey

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