Patient engagement in a Canadian health research funding institute: implementation and impact.

BACKGROUND: Patient engagement (PE) or involvement in research is when patient partners are integrated onto teams and initiatives (not participants in research). A number of health research funding organisations have PE frameworks or rubrics but we are unaware of them applying and reporting on their own internal PE efforts. We describe our work at the Canadian Institutes of Health Research's Institute of Musculoskeletal Health and Arthritis (CIHR IMHA) to implement, evaluate and understand the impact of its internal PE strategy. METHODS: A co-production model was used involving patient partners, a PE specialist and staff from IMHA. A logic model was co-developed to guide implementing and evaluating IMHA's PE strategy. Some of evaluating the PE strategy and understanding its impact was a collaboration between the Public and Patient Engagement Collaborative (McMaster University) and IMHA. RESULTS: IMHA convened a PE Research Ambassador (PERA) group which co-led this work with the support of a PE specialist. In doing so, PERA had a number of meetings since 2020, set its own priorities and co-produced a number of outputs (video, publications, webinars, blog and modules called the How-to Guide for PE in Research). This work to evaluate and measure impacts of IMHA's PE strategy revealed positive results, for example, on PERA members, Institute Advisory Board members and staff, as well as beyond the institute based on uptake and use of the modules. Areas for improvement are mainly related to increasing the diversity of PERA and to improving accessibility of the PE outputs (more languages and formats). CONCLUSIONS: Implementing a PE strategy within CIHR IMHA resulted in several PE activities and outputs with impacts within and beyond the institute. We provide templates and outputs related to this work that may inform the efforts of other health research funding organisations. We encourage health research funders to move beyond encouraging or requiring PE in funded projects to fully 'walk the talk' of PE by implementing and evaluating their own PE strategies.

Exploring the impact of a digital health tool on patients' interaction with community pharmacists: A pilot randomized controlled study.

BACKGROUND: The use of digital Patient- Reported Outcomes (PRO) tools has been shown to enhance the exchange of information and shared decision-making in medical encounters. However, their influence on patient-pharmacist interactions has not yet been explored. OBJECTIVES: This study aimed to examine the impact of RxTalk™, a digital PRO tool, in supporting the communication between patients and pharmacists compared to usual care. METHODS: Intervention: RxTalk™ was developed to collect information about medication adherence and beliefs, using a tablet computer. STUDY DESIGN: A pilot randomized controlled study was conducted at a community pharmacy in Wisconsin, USA. Sixty patients were randomized to either the intervention group who used RxTalk™ during medication pick-up or the control group who did not use the tool. Patients who used RxTalk™ received paper copies of their responses which were also shared with pharmacists. The consultation was audio-recorded for both groups and coded using the Active Patient Participation Coding scale. Follow-up phone interviews were conducted with both groups within one week of enrollment. RESULTS: Patient tapes were analyzed. In the unadjusted model, patients in the intervention group had a higher active participation rate (p = 0.004) and raised significantly more concerns during consultations (p < 0.001) compared to the control group. Pharmacists asked twice as many questions while counseling patients in the intervention group compared to the control group (p < 0.001). After controlling for patients' demographics and pharmacists' questions, there was a statistical difference between the two patient groups in their odds of expressing at least one concern utterance. CONCLUSION: This pilot study suggests that collecting PRO from patients with chronic illnesses and providing results to pharmacists and patients can help patients express their health and medication concerns. RxTalk™ would be useful for pharmacists who wish to improve the recognition and management of medication-related problems.

From identifying patient safety risks to reporting patient complaints: A grounded theory study on patients' hospital experiences.

AIM: To explore how patients with hospital experience construct patient safety, from the identification of a patient safety risk to the decision to file a complaint. BACKGROUND: Patients play an important role in the prevention of adverse events in hospitals, but the ability of patients to act and influence their own safety is still challenged by multiple factors. Understanding how patients perceive risk and act to prevent harm may shed light on how to enhance patients' opportunities to participate in patient safety. DESIGN: The research design of this study is qualitative and exploratory. METHODS: Twelve participants who had experienced Swedish hospital care were interviewed between June 2022 and July 2023. The method of analysis was constructivist grounded theory, focusing on social processes. The COREQ checklist for qualitative research was followed. RESULTS: Four categories were constructed: (1) defining the boundary between one's own capacity and that of the hospital, (2) acting to minimize the impact on one's safety, (3) finding oneself in the hands of healthcare professionals and (4) exploring the boundaries between normality and abnormality of the situation. This process was captured in the core category of navigating the path of least suffering. This illustrated how the participants constructed meaning about patient safety risks and showed that they prevented multiple adverse events. CONCLUSIONS: Provided that participants were able to act independently, they avoided a multitude of adverse events. When they were dependent on healthcare professionals, their safety became more vulnerable. Failure to respond to the participants' concerns could lead to long-term suffering. RELEVANCE TO CLINICAL PRACTICE: By responding immediately to patients' concerns about their safety, healthcare professionals can help prevent avoidable suffering and exhaustive searching for someone in the healthcare system who will take their needs seriously. PATIENT CONTRIBUTION: A member check was performed with the help of one of the participants who read the findings to confirm familiarity.

Humanisation in paediatric intensive care units: A narrative review.

OBJECTIVE: To identify findings in the scientific literature relevant to the strategic lines proposed by the Humanising Intensive Care Project in the context of paediatric intensive care units. DESIGN: Narrative review. METHODS: A literature search was conducted in the databases PubMed, Scopus, CINHAL, and Cochrane Library. Specific indexing terms and search strategies adapted to each database were designed. The inclusion of publications was based on two criteria: 1) related to the paediatric intensive care unit and 2) addresses at least one of the topics related to the strategic lines of the Humanising Intensive Care Project. Study selection was carried out following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the quality of the included studies was assessed using the Mixed Method Appraisal tool. RESULTS: A total of 100 articles from 19 different countries were included, covering the period between 2019 and 2021. Nineteen different design types were identified. Thirty-two studies were cross-sectional observational studies, while 15 had an experimental approach. The articles were distributed among the seven strategic lines of the Humanising Intensive Care Project. CONCLUSIONS: Synthesising the knowledge related to humanisation in paediatric intensive care units will allow progress to be made in improving quality in these units. However, there is disparity in the amount of experimental research overall. IMPLICATIONS FOR CLINICAL PRACTICE: There is a disparity in the available research related to the different strategic lines, and it is necessary to carry out more exhaustive research on topics such as the presence and participation of the family in care or the management of post-paediatric intensive care syndrome.

Engaging Youth Voice and Family Partnerships to Improve Children's Mental Health Outcomes.

Promoting active participation of families and youth in mental health systems of care is the cornerstone of creating a more inclusive, effective, and responsive care network. This article focuses on the inclusion of parent and youth voice in transforming our mental health care system to promote increased engagement at all levels of service delivery. Youth and parent peer support delivery models, digital innovation, and technology not only empower the individuals involved, but also have the potential to enhance the overall efficacy of the mental health care system.

Defining the Black population in Canadian health research: a scoping review protocol.

INTRODUCTION: In the context of health research in Canada, various terms and labels have been employed to reference the Black population. This practice has had the unintended consequence of diminishing the comparability and efficiency of studies. Furthermore, using a broad term such as 'Black' may fail to encompass the diversity and intricacy of the ethnocultural backgrounds of people who are racialised as such. It may also obscure the subtleties of their experiences and health outcomes. This study aims to examine how health researchers have defined Black within the scope of their work and different labels used to identify the Black population in Canada. METHODS AND ANALYSIS: We have developed and employed a comprehensive and sensitive search strategy to identify articles concerning the health and wellness of the Black population in Canada. Both peer-reviewed and grey literature will be searched. Original articles published in both English and French will be included. The screening process will consist of two stages: the title and abstract screening, followed by a thorough examination of full-text articles. Additionally, single citation tracking and manual search of reference lists will be conducted. Study characteristics and relevant information on the definition of the Black population will be extracted, followed by reflective thematic analysis and presentation of the key findings. ETHICS AND DISSEMINATION: This review will not require ethical approval. We will disseminate the results through meetings with stakeholders. From the beginning, a knowledge translation approach was decided upon following consultation with citizen researchers and community champions. Our findings will also be disseminated through oral and poster presentations, peer-reviewed publications, and social media.

A tool to assist rheumatologists to engage their lupus patients: the Purple Butterfly.

Objective: Translating the highly technical medical jargon of SLE into understandable concepts for patients, their families and individuals without expertise in SLE is a serious challenge. To facilitate communication and enable self-management in SLE, we aimed to create an innovative visual tool, the Purple Butterfly. Methods: We selected clinically representative criteria for SLE and transposed them as graphical features in an attractive and meaningful visual. We developed a script in R programming language that automatically transposes clinical data into this visualization. We asked SLE patients from a local cohort about the relevance, usefulness and acceptability of this visual tool in an online pilot survey. Results: The innovative Purple Butterfly features 11 key clinical criteria: age; sex; organ damage; disease activity; comorbidities; use of antimalarials, prednisone, immunosuppressants and biologics; and patient-reported physical and mental health-related quality of life. Each Purple Butterfly provides the health portrait of one SLE patient at one medical visit, and the automatic compilation of the butterflies can illustrate a patient's clinical journey over time. All survey participants agreed that they would like to use the Purple Butterfly to visualize the course of their SLE over time, and 9 of 10 agreed it should be used during their medical consultations. Conclusion: The Purple Butterfly nurtures effective doctor-patient communication by providing concise visual summaries of lupus patients' health conditions. We believe the Purple Butterfly has the potential to empower patients to take charge of their condition, enhance healthcare coordination and raise awareness about SLE.

Involvement of children and young people in the conduct of health research: A rapid umbrella review.

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

Moving from Principle to Practice: A Researcher's Guide to Co-Leading Engaged Research with Community Partners and Patients with Lived Experience to Reduce Maternal Mortality and Morbidity for Maternal Sepsis.

OBJECTIVES: Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers can often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the real-life strategies utilized to develop a community-engaged research project of a phased federally funded grant employing community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research. METHODS: This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice. RESULTS: TBased on the authors' experience, recommendations are provided for funders, researchers, and institutions to improve the quality and outcomes of communityengaged research. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for equitably engaging in research partnerships with a variety of collaborators. CONCLUSIONS: In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey.

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.

Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.

BACKGROUND: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. AIM: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. DESIGN: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis. SETTING/PARTICIPANTS: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness. RESULTS: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations). CONCLUSIONS: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.

Role of coproduction in the sustainability of innovations in applied health and social care research: a scoping review.

BACKGROUND: Innovations such as toolkits and frameworks are developed through applied health and social care research, to address identified gaps in quality or safety of care. The intention is to subsequently implement these innovations into practice to bring about improvements. Challenges can arise from poor choice of implementation strategies or lack of alignment to local contexts. Research has identified the importance of involving and engaging patients, health professionals and other stakeholders in the design and delivery of the underpinning research, and in informing subsequent implementation. However, how and why such coproduction influences the sustainability of innovations in health and social care is unclear. OBJECTIVE: The objective of this scoping review is to identify and present the available evidence regarding the role of coproduction in the sustainability of innovations in applied health and social care research. INCLUSION CRITERIA: This scoping review includes papers related to the role of coproduction in the sustainability of innovations in applied health and social care research published in peer-reviewed journals. The review is limited to articles reporting applied health and social care research conducted in the United Kingdom. METHODS: Scopus, Web of Science, CINAHL and MEDLINE were searched for studies. Titles and abstracts were screened by two independent reviewers for assessment against the inclusion criteria, followed by a full-text review and data extraction. Data were extracted using a data extraction form developed by the reviewers. The completed forms were imported into NVivo and analysed using basic qualitative content analysis. RESULTS: Our review provides insight into the role of coproduction in the sustainability of innovations in applied health and social care research. Our findings highlight that sustainability is a dynamic process, supported by coproduction activities such as ongoing collaborative partnerships; these can be planned for in both the research design and implementation phases of a project.

Patient participation in surgical wound care in acute care settings: An integrative review.

BACKGROUND: Surgical site infections can significantly impact postoperative recovery. Patient participation, which involves patients actively engaging in wound care, has been linked to improved healing and reduced wound complications. However, there is limited synthesis of the literature that explores the patient's role and participation in the context of surgical wound care. OBJECTIVE: To explore patients' perceptions of how they participate in surgical wound care, within 30 days post-operation. DESIGN: An integrative review guided by Whittemore and Knafl's methodology. This review was registered with PROSPERO (CRD42022363669). DATA SOURCES: Searches were conducted in Medline (Ovid), CINAHL (Complete), and EMBASE (Elsevier) databases in October 2023, supplemented by forward and backward citation searching. REVIEW METHODS: Based on a priori eligibility criteria, two authors independently screened articles to select relevant studies. The quality of the included research articles was critically appraised using the Mixed Methods Appraisal Tool. A descriptive and thematic synthesis was used to synthesise the findings. RESULTS: Of the 4701 records screened for titles and abstracts, 25 studies using qualitative, quantitative, and mixed-methods designs were included. Three key themes were identified. In theme 1, 'I am healing: how my wound shapes me and my journey,' physical symptoms, psychological factors and previous experiences significantly influenced patients' engagement in wound care. Theme 2, 'Taking charge of my healing: my active engagement in wound care' described how patient participation in surgical wound care goes beyond clinical procedures and can include the use of technology and holistic self-care. Finally, theme 3, 'Navigating the path to recovery: How others shape my experience' showed that effective communication is crucial for promoting participation, yet issues like inadequate information can leave patients unprepared for wound management. CONCLUSIONS: This review highlights opportunities to personalise and prioritise a patient-oriented approach to surgical wound care. Clinicians and educators should adopt an individualised approach by tailoring patient participation based on patient factors (i.e. physical symptoms) and adopt patient-centred communication approaches. Researchers should focus on exploring approaches to self-care and technology, as these approaches may enhance patient participation in wound care.

Patient participation in orthopaedic care-a survey on hip surgery patients' preferences for and experiences of engagement in their health and healthcare.

INTRODUCTION: Quality in health services is increasingly associated with enabling patients to participate in their own health and healthcare by recognising their resources and needs. Despite a growing recognition as to whether such participation is enabled, little is known regarding opportunities for preference-based patient participation in orthopaedic care. AIMS: To investigate preference-based participation for patients in orthopaedic care due to hip surgery. METHODS: Patients across 17 Swedish orthopaedic units who had had hip surgery, due to hip fracture or osteoarthritis, January-April 2021 were invited to complete the validated 4Ps questionnaire. Of 1514 patients, 458 patients returned the questionnaire with reports on their preferences for and experiences of participation. Each of the 4Ps' 12 items were analysed separately using descriptive and comparative statistics. RESULTS: A complete match in preferences for, and experiences of, participation was achieved with variation between items for 41%-50% of the patients; if almost matches were included, this occurred for 57%-77% of the patients. Less participation than preferred was most common in terms of having had reciprocal communication, opportunities for partaking in planning, and in learning how to manage symptoms/issues. Hip fracture surgery was significantly associated with experiencing lower levels of participation than preferred. CONCLUSION: Though standardised care promotes efficient hip surgery care, our study suggests a need for more person-centred opportunities to engage. A discrepancy was noted between patients' resources and preparation for their participation in and beyond the hip surgery process, particularly for self-care activities, calling for better use of nursing resources. ID: NCT04700969 with the U.S National Institutes of Health Clinical Registry.

Construction and Application of Patient-Participated Health Care Guidance Plan for Patients with Decompensated Hepatitis B Cirrhosis.

Objective: The goal of this study was to develop and assess the effectiveness of a patient-engaged healthcare guidance plan for individuals with decompensated hepatitis B cirrhosis. Methods: This study employed literature review, situational analysis, and expert consultations to create a healthcare guidance plan that includes patient participation for those suffering from decompensated hepatitis B cirrhosis. Between January 2022 and January 2023, 86 patients with this condition admitted to our hospital were selected through convenience sampling and randomly assigned into two groups using a random number table. The control group (n=43) received standard care, while the intervention group (n=43) received the novel patient-engaged healthcare guidance in addition to standard care. We compared both groups in terms of anxiety and depression levels, self-care capability, uncertainty about their illness, and overall quality of life. Results: Upon discharge, scores for the Self-Rating Anxiety Scale (SAS), Self-Rating Depression Scale (SDS), and Mishel's Uncertainty in Illness Scale (MUIS) decreased in both groups compared to their scores at admission (P<0.05), with the intervention group showing more significant improvements than the control group (P<0.05). Additionally, scores for the Self-Care Ability Scale (ESCA) and the component threshold scores of the Health Survey Short Form (SF-36) increased for both groups from admission to discharge (P<0.05), with the intervention group showing greater improvements than the control group (P<0.05). Conclusion: The patient-engaged healthcare guidance plan developed for individuals with decompensated hepatitis B cirrhosis proved to be highly effective. It significantly reduced patient anxiety and depression, enhanced self-care capabilities, diminished illness uncertainty, and improved overall quality of life.

Qualitative Comparison of Perceptions Regarding Patient Engagement for Patient Safety by Physicians, Nurses, and Patients.

Purpose: Patient engagement in ensuring patient safety is widely acknowledged, there is still a need to explore how perceptions of patient engagement vary among different stakeholders within the healthcare system. We aimed to compare the perceptions regarding patient engagement for patient safety among physicians, nurses, and patients by exploring the perspectives. Patients and Methods: A qualitative study, comprising three focus group discussions (six to eight people each), was conducted in South Korea. Physicians and nurses who worked at the general hospital level or higher, and patients who had been hospitalized for more than 24 hours, were included. Researchers analyzed the transcripts, and a content analysis was performed to describe influencing elements of patient engagement for patient safety. A word cloud was created through keyword analysis of the transcripts. Results: Based on 479 coded data, three categories and eight sub-categories were derived. The first moment of patient engagement was viewed as the choice of medical institutions. Reputation occupied a large part in the hospital selection for all participants, but they did not know about or use the national hospital evaluation data. Participants said that continuous patient engagement, such as the patient's active questioning attitude, guardian's cooperation, sufficient medical personnel, and patient safety education was required during treatment. However, it was said that patient engagement was ignored after patient safety incidents occurred. They mentioned that they were emotional and busy arguing for their own positions, and that it was difficult to use a medical dispute resolution method in practice. In the word cloud by group, fall, explanation, hospital, and patient were common words. Conclusion: All three groups agreed on the importance of patient engagement for patient safety but differed in its influencing factors. Efforts should be made to reduce the difference between the three groups on how to involve patients for patient safety.

To what extent can patient engagement for patient safety be expanded? In this study, we confirmed the diverse perceptions of patients and medical personnel regarding patient engagement for patient safety. Physicians, nurses, and patients all answered that they did not generally know about the objective medical institutions evaluation data provided by the national, and said that when choosing a medical institution, patients depended on information from their reputation, social media, and web site search. During treatment, both patients and medical personnel expressed their hopes for active and independent engagement from patients, but also expressed the difficulty of requesting cooperation in engagement and difficulties in education. After the patient safety incident, both patients and medical personnel were emotional and occupied in asserting their respective positions, and they complained about difficulties in resolving medical disputes that are difficult to use in practice.

Wonderings to research questions: Engaging patients in long COVID research prioritization within a learning health system.

Background: An integral component of research within a learning health system is patient engagement at all stages of the research process. While there are well-defined best practices for engaging with patients on predetermined research questions, there is little specific methodology for engaging patients at the stage of research question formation and prioritization. Further, with an emerging disease such as Long COVID, population-specific strategies for meaningful engagement have not been characterized. Methods: The COVID-19 Focused Virtual Patient Engagement Studio (CoVIP studio) was a virtual panel created to facilitate patient-centered studies surrounding the effects of long-term COVID ("Long COVID") also known as post-acute SARS-CoV-2 syndrome (PASC). A diverse group of panelists was recruited and trained in several different areas of knowledge, competencies, and abilities regarding research and Long COVID. A three-step approach was developed that consisted of recording panelists' broad wonderings to generate patient-specific research questions. Results: The "wonderings" discussed in panelists' training sessions were analyzed to identify specific populations, interventions, comparators, outcomes, and timeframes (PICOT) elements, which were then used to create a survey to identify the elements of greatest importance to the panel. Based on the findings, 10 research questions were formulated using the PICOT format. The panelists then ranked the questions on perceived order of importance and distributed one million fictional grant dollars between the five chosen questions in the second survey. Through this stepwise prioritization process, the project team successfully translated panelists' research wonderings into investigable research questions. Conclusion: This methodology has implications for the advancement of patient-engaged prioritization both within the scope of Long COVID research and in research on other rare or emerging diseases.

Rationalizing the Influence of Co-Design on Distress, Clinical Decision-Making and Disease Self-Management of Cancer Patients-as-Partners: A Quasi-Experimental Study.

INTRODUCTION: Cancer is regarded as a major worldwide burden. Patient distress has been linked to disease progression. Studies show that engagement strategies affect clinical decision-making and patient outcomes. The optimal engagement method is a partnership that integrates the patient's expertise into the comprehensive co-design of the healthcare system. OBJECTIVES: This is the first study to investigate cancer patient-as-partner experience and its impact on distress levels, decision-making and self-management. METHODS: It is a quantitative and quasi-experimental study that adopted a partnership committee at a Lebanese hospital. A stratified random sampling approach was used, and data were collected by self-administered questionnaires. We utilized the standardized distress thermometer and PPEET. RESULTS: We recruited 100 patient partners. Cancer patients-as-partners had optimal engagement experience in QI projects (mean = 4; SD = 0.4). The main partnership benefit was improved hospitalization experience (49%). Almost half of PP reported no challenges faced (49%). Recommendations for improvement were training (19%), team dynamics management (12%) and proper time allocation (7%). The distress level post-partnership was significantly reduced (t = 12.57, p < 0.0001). This study highlights the importance of partnership and its ability to influence shared decision-making preference [χ2(2) = 13.81, p = 0.025] and self-management practices [F(3, 11.87) = 7.294, p = 0.005]. CONCLUSION: Research findings suggest that partners from disadvantaged groups can have optimal partnership experience. A partnership model of care can shape the healthcare system into a people-oriented culture. Further research is needed to explore diverse PP engagement methodologies and their effect on organizational development. PATIENT OR PUBLIC CONTRIBUTION: Patients and family members were engaged in the co-design of the study methodology, especially the modification of a research instrument. Patient partners with lived experience were involved in the patient partnership committee as core members to improve healthcare system design and evaluation.

Near real-time patient experience feedback with data relay to providers: a systematic review of its effectiveness.

Near Real-Time Feedback (NRTF) on the patient's experience with care, coupled with data relay to providers, can inform quality-of-care improvements, including at the point of care. The objective is to systematically review contemporary literature on the impact of the use of NRTF and data relay to providers on standardized patient experience measures. Six scientific databases and five specialty journals were searched supplemented by snowballing search strategies, according to the registered study protocol. Eligibility included studies in English (2015-2023) assessing the impact of NRTF and data relay on standardized patient-reported experience measures as a primary outcome. Eligibility and quality appraisals were performed by two independent reviewers. An expert former patient (Patient and Family Advisory Council and communication sciences background) helped interpret the results. Eight papers met review eligibility criteria, including three randomized controlled trials (RCTs) and one non-randomized study. Three of these studies involved in-person NRTF prior to data relay (patient-level data for immediate corrective action or aggregated and peer-compared) and led to significantly better results in all or some of the experience measures. In turn, a kiosk-based NRTF achieved no better experience results. The remaining studies were pre-post designs with mixed or neutral results and greater risks of bias. In-person NRTF on the patient experience followed by rapid data relay to their providers, either patient-level or provider-level as peer-compared, can improve the patient experience of care. Reviewed kiosk-based or self-reported approaches combined with data relay were not effective. Further research should determine which approach (e.g. who conducts the in-person NRTF) will provide better, more efficient improvements and under which circumstances.

Unravelling clinicians' shared decision-making adoption: a qualitative exploration through the lens of diffusion of innovations theory.

OBJECTIVES: This study uses the diffusion of innovations (DOI) theory to comprehensively understand the adoption of shared decision-making (SDM) in clinical practice, specifically focusing on the 'knowledge' and 'persuasion' stages within DOI. We aim to understand the challenges and dynamics associated with SDM adoption, offering insights for more patient-centred decision-making in healthcare. DESIGN: This qualitative study employs a modified framework analysis approach, integrating ethnographic and interview data from prior research, along with additional interviews. The framework used is based on the DOI theory. STUDY SETTING AND PARTICIPANTS: This study was conducted in the obstetrics and gynaecology department of a tertiary teaching hospital in the Eastern region of the Netherlands. It included interviews with 20 participants, including gynaecologists, obstetrics registrars and junior doctors currently practising in the department. Additionally, data from prior research conducted within the same department were incorporated, ensuring the maintenance of contextual consistency. RESULTS: Findings reveal a complex interplay between SDM's benefits and challenges. Clinicians value SDM for upholding patient autonomy and enhancing medical practice, viewing it as valuable for medical decision-making. Decision aids are seen as advantageous in supporting treatment decisions. Challenges include compatibility issues between patient and clinician preferences, perceptions of SDM as time-consuming and difficult and limitations imposed by the rapid pace of healthcare and its swift decisions. Additionally, perceived complexity varies by situation, influenced by colleagues' attitudes, with limited trialability and sparsely observed instances of SDM. CONCLUSIONS: Clinicians' decision to adopt or reject SDM is multifaceted, shaped by beliefs, cognitive processes and contextual challenges. Cognitive dissonance is critical as clinicians reconcile their existing practices with the adoption of SDM. Practical strategies such as practice assessments, open discussions about SDM's utility and reflective practice through professional development initiatives empower clinicians to make the best informed decision to adopt or reject SDM.