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This dissertation investigates the Patient Input Program, the context from which it arose and the struggles that it evokes for rare disease patients. By drawing on the concepts of boundary work, boundary object, public involvement and needs talk, the dissertation explores a local application of patient involvement as a construction of social participation and site where the needs of rare disease patients are contested among the actors, groups and institutions involved in the Health Technology Assessment (HTA) network. A case study approach was chosen to explain the intrinsic aspects of the Patient Input Program, showing the shaping of the Program and its shaping effect on societal agents and knowledge forms, particularly with respect to rare disease patients. Their experience in the Patient Input Program provides insights on the complexities and controversies rooted within the program, and links more broadly to certain system inadequacies.

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Background: The meeting between the patient and nurses is the foundation of health care. It is important to get an understanding of the patient's experience of care in the emergency department from his perspective, to reduce dissatisfaction and suffering and promote good health for patients.     Aim: The purpose is to get a comprehensive picture of adult patients' experiences of communication and participation in the emergency department.     Method: A literature review with thematic content analysis using deductive approach, based on 14 qualitative articles.     Results: According to the patients affected their experience of communication and participation in the emergency department how they will be attending nurse and visibility they get in their care situation. There were four themes based on the result, which is "to get individualized information creates knowledge," A mutual dialogue builds trust and security "," To not understand the medical aspects causing concern "and" Being able to control their health situation provides a greater understanding of health situation ". / Bakgrund: Mötet mellan patient och sjuksköterska utgör grunden i hälso- och sjukvården. Det är av stor vikt att få en förståelse för patientens upplevelse av omvårdnaden på akutmottagningen ur dennes perspektiv för att minska missnöje och lidande och främja en god hälsa hos patienter.   Syfte: Syftet är att få en översiktlig bild av vuxna patienters upplevelse av kommunikation och delaktighet på akutmottagningen.   Metod: En litteraturstudie med tematisk innehållsanalys och deduktiv ansats, baserad på 14 kvalitativa artiklar.   Resultat: Enligt patienter påverkas deras upplevelse av kommunikation och delaktighet på akutmottagning av hur de blir behandlande av sjuksköterskan samt den insyn de får i sin vårdsituation. Det uppkom fyra teman utifrån resultatet, vilka är “Att få individualiserad information skapar kunskap, “En ömsesidig dialog skapar tillit och trygghet”, “Att inte förstå de medicinska aspekterna skapar oro” och “Att kunna kontrollera sin vårdsituation ger ökad förståelse för vårdsituationen”.   Slutsats: Resultatet av litteraturstudien visar att kommunikation och delaktighet på akutmottagningen påverkas av patientens upplevda trygghet och kontroll över sin vårdsituation samt av förtroenden för sjuksköterskan. Patientens rädsla och oro under sin vårdtid kan minska när informationen är mer individanpassad eftersom denne känner sig mer delaktig och känner större kontroll över sin vårdsituation. Det är därför viktigt att sjuksköterskan lyssnar till patientens behov och bjuder in denne till en god och ömsesidig dialog. Det är lika viktigt för sjuksköterskan att förstå vikten av att involvera patienten i alla aspekter som rör patientens vårdsituation samt att kunna identifiera varje patientens behov av god omvårdnad.

Patient safety strategies have traditionally involved the promotion of provider-oriented practices aimed at reducing known risks associated with surgery, infection, and continuity of care. With the knowledge that patient safety incidents can significantly impact patients, providers, and health care organizations, greater emphasis on patient involvement as a means to mitigate risks warrants further research. The primary objective of this research was to determine the relationship between perceptions of patient safety and the likelihood of patient involvement in both factual and challenging patient safety practices. This mixed methods study was conducted at two tertiary hospital sites located in Atlantic Canada between February 2011 and January 2012. The study design was the sequential explanatory model of mixed methods design, integrating both quantitative survey methods and qualitative focus group methods for both patient and provider participants. Survey data were analyzed using descriptive statistics and partial least squares (PLS) analysis. Focus group sessions were transcribed and analyzed using thematic analysis. The development and analysis of this research was guided by the Health Belief Model. Overall, patients were more willing to engage in factual patient safety practices (e.g., asking questions of their doctors) than challenging patient safety practices (e.g., asking a provider if they have washed their hands). The patient PLS analysis revealed relationships between patient perceptions of threat and self-efficacy and the performance of factual and challenging patient safety practices, explaining 46% and 42% of the variance, respectively. The provider PLS model found that perceptions of safety culture accounted for 34% of the variance in perceptions of threat and 42% of the variance in perceptions of barriers versus benefits. Thematic analysis resulted in the identification of four major themes for both patient and providers related to the phenomenon of patient involvement. Quantitative and qualitative results were complementary in nature. Perceptions of patient safety were shown to influence both patient and provider likelihood in engaging in selected patient safety practices. Greater understanding of the roles that perceptions play in patient involvement in their care may help to improve the safety and quality of care delivered.

Background: Commitment to patient engagement in research provides significant opportunities to advance our understanding of patients’ experience whilst fostering sensitivity and progress in research. Yet, people who are frail or seriously ill are rarely given the opportunity to partner across the course of a research study. Little is known about their impact on the conduct of research and the best ways of ‘meaningfully’ involving them as research partners. A series of studies using multiple methods were conducted to explore meaningful engagement of frail and seriously ill patients as partners in research. Study 1: A systematic review with narrative synthesis was conducted to describe the engagement of frail and seriously ill patients as research partners across the research cycle. Thirty eligible studies showed emerging evidence that research partnerships with frail and seriously ill patients can be achieved successfully. Frailty and serious illness present legitimate concerns due to the vulnerability of patient-partners but can be successfully mitigated when researchers ensure timing and methods of engagement are flexible and practical, and emotional needs of patient partners are consistently addressed. Study 2: A qualitative sub-analysis of the prior systematic review was conducted to identify ethical considerations of engaging frail and seriously ill patients as research partners. Findings revealed that researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address relational and intellectual power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Study 3: An analytic autoethnography was conducted to explore how patient engagement is embodied and situated during serious illness. Findings provide a unique contribution to the discourse on representation and contested identity. Current concerns of tokenism are countered through recognition of ways in which patients ‘find’ and ‘make’ meaning through research partnerships. Partnering with seriously ill patients offers enormous potential to advance research through harnessing the power of embodied knowledge production. Conclusion: This dissertation highlights the importance of ensuring that the voices of frail and seriously ill patient-partners’ are heard first-hand. It further demonstrates, the current methodological imperative of patient engagement requires novel approaches to both enacting and evaluating patient engagement.

Yes / Aim: To explore how men with penile cancer construct humour in relation to their diagnosis and treatment. Background: Functionalist, relief and incongruity theories attempt to account for humour but there is a dearth of empirical evidence in nursing care. This is particularly so in relation to a condition like penile cancer where some nurses think that humour in their interactions with patients would be inappropriate. Design: The study employed a participative, mixed-qualitative-methods design. Method: Focus groups and patient-conducted interviews were both used during a one-day ‘pilot workshop’ in March 2011. The data were initially analysed using framework analysis. This paper explores the theme of humour in depth. Findings: Humour helped participants make light of their condition, which meant that they could laugh about the consequences of treatment (‘laughing about urination’) and build rapport with health professionals (‘humour with health professionals’). Nevertheless, the use of humour was less important than the treatment of their cancer (‘humour discounted’) and there was a fear that they would be subject to ridicule because of their condition (‘fear of ridicule’). Conclusion: The findings suggest a combination of functionalist, relief and incongruity theories of humour; the emotions these men experience are contained (functionalist) and released (relief) through humorous interaction, and the potential for comedy lies in an incongruity between what is expected socially and the experiences of these men, for example around expectations that men use urinals in public toilets. Nurses should continue to use humour to build rapport with patients, should they judge this to be appropriate although they may want to avoid jokes about sexual and urinary functioning until after treatment. / National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0808-17158).

Yes / Introduction: There are risks to the safety of medicines management when patient care is transferred between healthcare organisations, for example when a patient is discharged from hospital. Using the theoretical concept of resilience in healthcare, this study aimed to better understand the proactive role that patients can play in creating a safer, resilient medicines management at a common transition of care. Methods: Qualitative interviews with 60 cardiology patients six weeks after their discharge from two UK hospitals explored patients’ experiences with their discharge medicines. Data were initially subjected to an inductive thematic analysis and a subsequent theory-guided deductive analysis. Results: During interviews twenty-three patients described medicines management resilience strategies in two main themes: identifying system vulnerabilities; and establishing self-management strategies. Patients could anticipate problems in the system that supplied them with medicines and took specific actions to prevent them. They also identified when errors had occurred both before and after medicines had been supplied and took corrective action to avoid harm. Some reported how they had not foreseen problems or experienced patient safety incidents. Patients recounted how they ensured information about medicines changes was correctly communicated and acted upon, and identified their strategies to enhance their own reliability in adherence and resource management. Conclusion: Patients experience the impact of vulnerabilities in the medicines management system across the secondary-primary care transition but many are able to enhance system resilience through developing strategies to reduce the risk of medicines errors occurring. Consequently, there are opportunities – with caveats – to elicit, develop and formalise patients’ capabilities which would contribute to safer patient care and more effective medicines management.

Yes / Care Opinion is an online feedback platform supporting patients to author stories about their care. It is not known whether authors would be willing to be involved in improving care through research. The aims of this study were to explore the views and preferences of Care Opinion authors about joining an online research community and to pilot new research community functionality. Five hundred and nine Care Opinion authors were invited to take part in an online survey in June 2019. Survey items included questions about participants' willingness to take part in research and their preferences for supporting processes. Data were analysed descriptively. Authors were invited to consent to join a research community and were asked to participate in three pilot studies. One hundred and sixty-three people consented to take part in the survey (32%). Participants indicated they would like to know the time commitment to the project (146, 90%), details about the organization carrying out the research (124, 76%) and safeguarding information (124, 76%). Over half indicated that they did not know how to get involved in healthcare research (87, 53%). Subsequently, 667 authors were invited to join the research community, 183 (27%) accepted, and three studies were matched to their expressed preferences for project attributes or organization type. Many people who leave online feedback about their experiences of healthcare are also willing to join a research community via that platform. They have strong preferences for supporting University and NHS research. Eligibility and acceptance rates to join pilot research studies varied. Further work is needed to grow the research community, increase its diversity, and create relevant and varied opportunities to support research. Four members of the Safety In Numbers patient and public involvement and engagement (PPIE) group advised about survey development. / National Institute for Health and Care Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC)

No / There is considerable concern that patient involvement within health care research is tokenistic in nature. This has led to an increasing interest in the quality of patient involvement in research with active collaboration with patients and carers encouraged. In this paper, with specific reference to renal disease, the aim was to identify and explore the possible challenges that may arise from academic researchers collaborating with clinicians, patients and carers as part of the same project panel. The project panel consisted of the principal investigator, senior research fellow, research practitioner, a nephrology consultant, a cultural liaison officer, pre-dialysis, dialysis and transplant patients and also a carer. Semi-structured qualitative interviews were conducted with members of the panel. The main challenges identified included: ensuring the panel included patients from different modalities of renal disease and different social and cultural s, managing member expectations, conducting meetings, communication, financial constraints and patient anxiety. Enablers of the collaborative process were found to be: relevance to the research project, early involvement, previous experience with research, panel composition and flexibility. The study has clear practical implications for collaborative involvement of patients and carers in social and health care research.