Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools.

Background: Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods: We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results: PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion: The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

Studying How Patient Engagement Influences Research: A Mixed Methods Study.

BACKGROUND: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. METHODS: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. RESULTS: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. CONCLUSION: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.

Experiences of Irritable Bowel Syndrome Patients in a Virtual Yoga Program: Qualitative Findings from a Clinical Trial.

BACKGROUND AND AIMS: In-person yoga interventions have shown feasibility and effectiveness in improving the outcomes of patients with irritable bowel syndrome (IBS), but experiences in virtual yoga interventions have not been examined. This study aimed to explore patients' experiences of a virtually delivered yoga intervention for IBS. METHODS: An embedded qualitative substudy was included in a randomized controlled trial examining the feasibility and effectiveness of a virtual yoga program among adult patients with IBS. Semi-structured interviews captured participants' past and current experiences, program satisfaction, perceived impact on IBS symptoms and overall physical and mental health, facilitators and barriers to participation, perceptions of social support and supervised learning, and input on improving future programming. Data were coded and analyzed in duplicate using NVivo 12. An analytic template based on the interview guide was developed and thematic analysis identified themes, as well as the relationship between themes and subthemes. RESULTS: Among the 14 participants (all female, mean age 47.7 years), three major themes were identified: (1) positive experience in the yoga program, (2) incorporating yoga into IBS management post-study, and (3) recommendations for program improvement. CONCLUSION: Patients with IBS experience in a virtual yoga program was positive with improvements in physical and mental health outcomes. Considering the barriers and facilitators to participating in an online yoga program along with participant recommendations may improve future intervention design and delivery to increase self-efficacy and confidence among patients with IBS.

Exploring the outcomes of research engagement using the observation method in an online setting.

OBJECTIVE: The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. DESIGN: We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis. SETTING: The study was conducted online. PARTICIPANTS: Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study. MAIN OUTCOME MEASURES: Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE. RESULTS: Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups. CONCLUSIONS: Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.

Managing juvenile idiopathic arthritis within the context of their life: What we learnt from children and youth living with juvenile idiopathic arthritis and their parents.

INTRODUCTION: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children and causes short- and long-term disability. Optimal management requires pharmacologic and non-pharmacologic interventions. Few studies have explored the youth and family experience of the management of JIA. This study's objective was to explore the management experience of youth with JIA and their parents. METHODS: This qualitative study used semi-structured interviews with youth 12-18 years of age with JIA receiving biological medication and parents of children with JIA on biological medication. Participants were recruited in clinics using convenience sampling. A thematic analysis approach was employed for data analysis. RESULTS: Nine youth and 14 parents participated. Four themes were identified that encompassed an overarching theme of participants managing JIA within the context of their life: aspects of life affected by JIA and its management, lived experience with JIA management, medication decision-making, and involvement in decision-making. Juvenile idiopathic arthritis management is situated within the context of their life but is normally (outside acute events) not central. CONCLUSION: Two dimensions were added to those in the literature: parents' overall approaches to health and the sense of urgency surrounding decision-making. Our findings reinforce the importance of person- and family-centred care in paediatric rheumatology. That is, identifying what matters most to youth and their parents given their current life circumstances to provide a foundation for discussions of how they want to manage their JIA.

Family caregivers as essential partners in care: examining the impacts of restrictive acute care visiting policies during the COVID-19 pandemic in Canada.

INTRODUCTION: During the pandemic many Canadian hospitals made significant changes to their 'open family presence' and 'visitor policies' to reduce the spread of COVID-19 by instituting restrictive or 'zero visiting' policies in healthcare facilities. These policies have the potential to create great hardship, anxiety and stress for patients, families, caregivers and frontline healthcare providers (HCPs); along with concerns about the quality and safety of patient care. The presence of family members and other caregivers as essential partners in care is an explicit expression of the philosophy of patient- and family-centred care (PFCC) in action. The purpose of this study is to increase our understanding of how changes to family presence and visiting policies and practices during the COVID-19 pandemic have impacted patients, family caregivers and frontline healthcare providers (HCPs) in acute care hospitals. METHODS: A total of 38 in-depth semi-structured interviews were conducted with patients, family caregivers and HCPs in Canadian provinces who had experience with visiting policies in acute care settings during the pandemic. COVID patients, and the caregivers of COVID patients, were excluded from this study. A maximum variation sampling strategy was used to guide the selection and recruitment of patients, family caregivers and HCPs, based on our interest in gaining a diversity of perspectives and experiences. RESULTS: Many patients, family caregivers, and HCPs view family caregiver presence as integral to PFCC, describing the essential roles played by family caregivers prior to the pandemic. There were commonalities across all three groups with respect to their perspectives on the impacts of restrictive visiting policies on patients, family caregivers and HCPs. They fell into four broad integrated categories: (1) emotional and mental health; (2) communication and advocacy; (3) safety and quality of care; and (4) PFCC, trust in the healthcare system, and future decisions regarding accessing needed healthcare. Recommendations for pandemic visiting policies were also identified. CONCLUSIONS: The findings from this study highlighted several impacts of restrictive family caregiver presence or visiting policies implemented during COVID-19 on patients, family caregivers and HCPs in acute healthcare settings across Canada. Participants emphasized that there is no "one-size-fits-all" caregiver presence policy that will address all patient needs. To be consistent with the practice of PFCC, patients and family caregivers are welcomed as part of the healthcare team in ways that work for them, demonstrating that flexibility in family presence and visiting policies is essential.

Patient Experiences in the Management of Inflammatory Bowel Disease: A Qualitative Study.

Background: Inflammatory bowel disease (IBD) can lead to substantial impairments of quality-of-life. Clinical guidelines and quality indicators aid physicians in practice but may not reflect the perspectives and experiences of patients with IBD. To address this, the objectives of this study were to understand patient experiences with IBD care and to explore priorities. Methods: Based on a convenience sample of 36 participants, five focus groups were completed at four sites across Canada. Data were analyzed using a deductive thematic analysis approach to assess emergent themes and variability in participants' experiences. Results: Our results are organized by themes of structure, process and outcomes to illustrate common issues with respect to how care is organized in the healthcare system, how patients receive and experience care and how patients perceive the outcomes of their care. Our results frame a health systems quality approach that signal needed improvements in access to care, the need for innovation with respect to virtual medicine, the potential expansion of multidisciplinary team-based care and the importance of addressing the psychosocial dimensions for patients with IBD and their caregivers in order to better deliver patient-centred care. Conclusions: The issues identified have the potential to impact priority areas in the system, IBD care delivery, and how outcomes can be improved by focusing on 'lived experience' and patient-centred care. The differing values and perspectives of all those involved in caring for patients with IBD underscore the importance of good communication with patients, caregivers and family members, as well as staying responsive to evolving needs.

Meditation and yoga for irritable bowel syndrome: study protocol for a randomised clinical trial (MY-IBS study).

INTRODUCTION: When delivered in person, yoga has been shown to be effective in managing irritable bowel syndrome (IBS) symptoms. Research is needed to test the feasibility and effectiveness of yoga as a therapeutic option when delivered virtually. The primary aim of the mind and yoga for IBS randomised controlled trial is to determine the effects of an 8-week virtual meditation and yoga intervention on IBS symptom severity compared with an advice-only active control group. METHODS AND ANALYSIS: Adults diagnosed with IBS will be randomised to receive either a Upa Yoga intervention or an advice-only control group. The intervention will consist of weekly online classes for 8 weeks delivered by a facilitator using Microsoft Office Teams and daily home practice. Feasibility will be evaluated by examining recruitment and attrition rates, adherence, participant satisfaction with the programme and safety. The primary outcome is IBS symptom severity, and key secondary outcomes include (but not limited to) quality of life, anxiety and depression symptoms, COVID-19-related stress and anxiety, and fatigue. Outcomes will be assessed at baseline, 4 weeks and 8 weeks. An embedded design experimental model substudy will be conducted post intervention using qualitative research methods to identify participants' experiences in the yoga programme. ETHICS AND DISSEMINATION: This study has been approved by the Conjoint Health Research Ethics Board (REB ID 20-0084). Findings will be disseminated through peer-reviewed publication, conference presentation and social media. TRIAL REGISTRATION NUMBER: NCT04302623.

Factors That Patients Consider in Their Choice of Non-Surgical Management for Hip and Knee Osteoarthritis: Formative Qualitative Research for a Discrete Choice Experiment.

BACKGROUND: Approximately half of patients with hip and knee osteoarthritis have tried non-surgical management before surgical consultation. Understanding the many factors affecting the uptake of recommended strategies is important to inform future development of such management strategies. OBJECTIVES: The aim of this study was to explore and identify factors that patients with osteoarthritis consider when choosing non-surgical management for hip and knee osteoarthritis, as formative research for a study of patient preferences for non-surgical management programs for osteoarthritis. METHODS: A qualitative research design was used. Participants were recruited using a combination of stratified and convenience sampling. Interviews were conducted, using a semi-structured interview guide, with English-speaking patients who had self-reported hip and/or knee osteoarthritis and at least one joint that had not undergone replacement surgery. Data were thematically analyzed. RESULTS: Thirteen patients participated in these interviews. Sixteen factors that participants considered when choosing non-surgical osteoarthritis management were identified. Eleven were extrinsic, relating to features of programs and services, and are categorized as types of interventions, general program and service details, and program-specific details. Five were intrinsic to the individual and influenced how decisions for osteoarthritis management were approached and the options available to choose from. Three novel factors included participants' desire for further management, their views about joint replacement surgery, and whether they felt personal choice was available in osteoarthritis management strategies. CONCLUSION: Key factors were identified that patients considered when making decisions about non-surgical management for their osteoarthritis that will be used to inform a discrete choice experiment (DCE) that aims to measure preferences for these factors.

Patient beliefs about who and what influences their hip and knee osteoarthritis symptoms and progression.

BACKGROUND: Osteoarthritis management aims to reduce pain and improve function. Many factors affect whether patients follow recommended strategies. Locus of control refers to individual beliefs around who and what influences health. Locus of control is related to the treatment strategies patients prefer. Currently, no studies explore locus of control in non-surgical management of osteoarthritis. OBJECTIVES: To explore patients' beliefs about the influences on their osteoarthritis symptoms and disease progression. METHODS: Semi-structured interviews were conducted with individuals experiencing self-reported hip and/or knee osteoarthritis who had at least one joint that had not undergone replacement surgery. We used a qualitative description approach and the Braun and Clarke method for thematic analysis. Participants' locus of control classifications-internal, chance, doctors, or other people-were based on the Multidimensional Health Locus of Control (MHLC) Scales Form C score. RESULTS: Locus of control was discussed in relation to aetiology, progression, and symptoms. Participants' opinions varied on whether their osteoarthritis progression could be influenced. 46% of participants attributed control to other people. Most participants believed that a previous injury had caused their osteoarthritis and that both themselves and others had some influence over their osteoarthritis symptoms, regardless of their locus of control classification. CONCLUSION: This research highlights the need for education about: the aetiology of osteoarthritis, the link between management and progression, and patient management of osteoarthritis. Further research is required to discern why expected patterns were not observed between participants' beliefs and locus of control classifications.

Exoskeleton use in acute rehabilitation post spinal cord injury: A qualitative study exploring patients' experiences.

CONTEXT/OBJECTIVE: Spinal cord injury (SCI) is intensely life altering, affecting multiple body systems and functions, including the ability to walk. Exoskeleton assisted walking (EAW) is a rehabilitation tool that aims to support locomotor training, yet little is known about the patient experience. The purpose of this qualitative study, part of a prospective observational case series, was to increase our understanding of SCI patient experience using a robotic exoskeleton in this acute post-injury period. DESIGN: A qualitative descriptive approach was implemented in this study, with the aim to explore and understand participants' experience with EAW training. PARTICIPANTS/SETTING: Nine of the 11 participants enrolled in the observational study agreed to participate in an interview. All participants had suffered a SCI, and had received their trauma care and inpatient rehabilitation at a tertiary center in Calgary, Alberta, Canada. RESULTS: The benefits to EAW use described by participants were primarily psychological and included the joy of eye level contact, excitement at being able to walk with assistance, improvement in mood, and hope for the future. Potential physiological benefits include increased strength, decreased spasticity and reduced pain. Challenges to EAW use include weakness and fatigue, and a fear of incontinence. CONCLUSION: Qualitative research will continue to be an important component in future research on the use of EAW training as part of the rehabilitation process. Increasing understanding of the participants experience with this novel therapeutic modality and technology will be fundamental to improve its implementation in clinical practice.

Attitudes, behaviours and barriers to public health measures for COVID-19: a survey to inform public health messaging.

BACKGROUND: Public support of public health measures including physical distancing, masking, staying home while sick, avoiding crowded indoor spaces and contact tracing/exposure notification applications remains critical for reducing spread of COVID-19. The aim of our work was to understand current behaviours and attitudes towards public health measures as well as barriers individuals face in following public health measures. We also sought to identify attitudes persons have regarding a COVID-19 vaccine and reasons why they may not accept a vaccine. METHODS: A cross-sectional online survey was conducted in August 2020, in Alberta, Canada in persons 18 years and older. This survey evaluated current behaviours, barriers and attitudes towards public health measures and a COVID-19 vaccine. Cluster analysis was used to identify key patterns that summarize data variations among observations. RESULTS: Of the 60 total respondents, the majority of persons were always or often physically distancing (73%), masking (65%) and staying home while sick (67%). Bars/pubs/lounges or nightclubs were visited rarely or never by 63% of respondents. Persons identified staying home while sick to provide the highest benefit (83%) in reducing spread of COVID-19. There were a large proportion of persons who had not downloaded or used a contact tracing/exposure notification app (77%) and who would not receive a COVID-19 vaccine when available (20%) or were unsure (12%). Reporting health authorities as most trusted sources of health information was associated with greater percentage of potential uptake of vaccine but not related to contact tracing app download and use. Individuals with lower concern of getting and spreading COVID-19 showed the least uptake of public health measures except for avoiding public places such as bars. Lower concern regarding COVID-19 was also associated with more negative responses to taking a potential COVID-19 vaccine. CONCLUSION: These results suggest informational frames and themes focusing on individual risks, highlighting concern for COVID-19 and targeting improving trust for health authorities may be most effective in increasing public health measures. With the ultimate goal of preventing spread of COVID-19, understanding persons' attitudes towards both public health measures and a COVID-19 vaccine remains critical to addressing barriers and implementing targeted interventions and messaging to improve uptake.

Attitudes, current behaviours and barriers to public health measures that reduce COVID-19 transmission: A qualitative study to inform public health messaging.

Public health measures to reduce COVID-19 transmission include masking in public places, physical distancing, staying home when ill, avoiding high-risk locations, using a contact tracing app, and being willing to take a COVID-19 vaccine. However, adoption of these measures varies greatly. We aimed to improve health messaging to increase adherence to public health behaviours to reduce COVID-19 transmission by: 1) determining attitudes towards public health measures and current behaviours; 2) identifying barriers to following public health measures; and, 3) identifying public health communication strategies. We recruited participants from a random panel of 3000 phone numbers across Alberta to fill a predetermined quota: age (18-29; 30-59; 60+ years), geographic location (urban; rural), and whether they had school-age children. Two researchers coded and themed all transcripts. We performed content analysis and in-depth thematic analysis. Nine focus groups were conducted with 2-8 participants/group in August-September, 2020. Several themes were identified: 1) importance of public health measures; 2) compliance with public health measures; 3) critiques of public health messaging; and 4) suggestions for improving public health messaging. Physical distancing and masking were seen as more important than using a contact tracing app. There were mixed views around willingness to take COVID-19 vaccine. Current public health messaging was perceived as conflicting. Participants felt that consistent messaging and using social media to reach younger people would be helpful. In conclusion, these findings provide insights that can be used to inform targeted (e.g., by age, current behaviour) public health communications to encourage behaviors that reduce COVID-19 transmission.

Patients' experience with and perspectives on neuromodulation for pain: a systematic review of the qualitative research literature.

Chronic pain has far-reaching impacts on a person's life and on society more broadly. After failure or intolerance of conservative treatments, neuromodulation may be an option for a subgroup of patients. However, little is known about the patient experience of neuromodulation. We conducted a systematic review of published qualitative research on patient experience with neuromodulation for chronic pain. Four databases were searched: MEDLINE, EMBASE, Psych INFO, and all EMB reviews, from inception to December 4, 2019. We used narrative synthesis to identify key findings from the included studies. The data were qualitatively analyzed using a modified constant comparative analysis to identify key themes across the studies. Seven thousand five hundred forty-two unique citations were retrieved. Sixty-four abstracts were selected by the reviewers and continued to full-text review. After full-text review, 57 studies were excluded with 7 studies included in this systematic review. The included studies were of high quality. Four broad themes emerged: (1) living with chronic pain, (2) expectations, (3) managing challenges, and (4) regaining normalcy. Neuromodulation should be part of an overall pain management plan that may include the need for ongoing emotional and psychosocial support. A deeper knowledge of the patient experience with neuromodulation will assist care teams in providing meaningful support to patients. The results of this study suggest that further research is needed to support neuromodulation as an option for patients living with chronic pain.

Effectiveness of Neurostimulation Technologies for the Management of Chronic Pain: A Systematic Review.

OBJECTIVES: To describe the state of the literature for clinical effectiveness of neurostimulation used for the management of chronic pain. METHODS: A systematic review of spinal cord stimulation (SCS), peripheral nerve stimulation (PNS), peripheral nerve field stimulation (PNFS), and supraorbital transcutaneous electrical nerve stimulation in patients with cancer and noncancer chronic pain was conducted. MEDLINE, Embase, CINAHL, and the Cochrane CENTRAL Register of Controlled Trials were searched, using terms like "electrical stimulation therapy" and "pain management." Direction of effect, consistency across studies, and strength of evidence for effects of neurostimulation on chronic pain were narratively synthesized. RESULTS: A total of 15 randomized controlled trials (RCTs) examining SCS, 7 RCTs examining PNS/PNFS, and 1 nonrandomized trial examining supraorbital transcutaneous electrical nerve stimulation (TENS) were included. In nine SCS studies, neurostimulation had positive effects on pain. In three studies, neurostimulation did not significantly reduce pain. For PNS/PNFS, five studies found improvements in pain offered by neurostimulation; pain outcomes were not reported in two studies. In the TENS study, neurostimulation reduced headaches per month and medication consumption. Overall, 21 studies were of low or unclear risk of bias, 4 were high risk of bias, and the TENS study was not appropriate for assessment using the Cochrane Risk of Bias tool. CONCLUSIONS: A robust body of evidence examining SCS and PNS was identified. Only one study for PNFS and TENS was identified; both reported pain reductions. Generally, neurostimulation improved pain control. Future studies should examine the effectiveness of neurostimulation offered early in the trajectory of chronic pain.

Improving the quality of care with a single-entry model of referral for total joint replacement: a preimplementation/postimplementation evaluation.

OBJECTIVES: We assessed: (1) waiting time variation among surgeons; (2) proportion of patients receiving surgery within benchmark and (3) influence of the Winnipeg Central Intake Service (WCIS) across five dimensions of quality: accessibility, acceptability, appropriateness, effectiveness, safety. DESIGN: Preimplementation/postimplementation cross-sectional design comparing historical (n=2282) and prospective (n=2397) cohorts. SETTING: Regional, provincial health authority. PARTICIPANTS: Patients awaiting total joint replacement of the hip or knee. INTERVENTIONS: The WCIS is a single-entry model (SEM) to improve access to total hip replacement (THR) or total knee replacement (TKR) surgery, implemented to minimise variation in total waiting time (TW) across orthopaedic surgeons and increase the proportion of surgeries within 26 weeks (benchmark). Impact of SEMs on quality of care is poorly understood. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcomes related to 'accessibility': waiting time variation across surgeons, waiting times (Waiting Time 2 (WT2)=decision to treat until surgery and TW=total waiting time) and surgeries within benchmark. Analysis included descriptive statistics, group comparisons and clustered regression. RESULTS: Variability in TW among surgeons was reduced by 3.7 (hip) and 4.3 (knee) weeks. Mean waiting was reduced for TKR (WT2/TW); TKR within benchmark increased by 5.9%. Accessibility and safety were the only quality dimensions that changed (post-WCIS THR and TKR). Shorter WT2 was associated with post-WCIS (knee), worse Oxford score (hip and knee) and having medical comorbidities (hip). Meeting benchmark was associated with post-WCIS (knee), lower Body Mass Index (BMI) (hip) and worse Oxford score (hip and knee). CONCLUSIONS: The WCIS reduced variability across surgeon waiting times, with modest reductions in overall waits for surgery. There was improvement in some, but not all, dimensions of quality.

Recruitment of caregivers into health services research: lessons from a user-centred design study.

BACKGROUND: With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods - successful and unsuccessful - that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. METHODS: We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. RESULTS: Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work - the time and compromises it requires - has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. CONCLUSIONS: In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Insights from the design and implementation of a single-entry model of referral for total joint replacement surgery: Critical success factors and unanticipated consequences.

BACKGROUND: Single-entry models (SEMs) in healthcare allow patients to see the next-available provider and have been shown to improve waiting times, access and patient flow for preference-sensitive, scheduled services. The Winnipeg Central Intake Service (WCIS) for hip and knee replacement surgery was implemented to improve access in the Winnipeg Regional Health Authority. This paper describes the system's design/implementation; successes, challenges, and unanticipated consequences. METHODS: On two occasions, during and following implementation, we interviewed all members of the WCIS project team, including processing engineers, waiting list coordinators, administrators and policy-makers regarding their experiences. We used semi-structured telephone interviews to collect data and qualitative thematic analysis to analyze and interpret the findings. RESULTS: Respondents indicated that the overarching objectives of the WCIS were being met. Benefits included streamlined processes, greater patient access, improved measurement and monitoring of outcomes. Challenges included low awareness, change readiness, and initial participation among stakeholders. Unanticipated consequences included workload increases, confusion around stakeholder expectations and under-reporting of data by surgeons' offices. Critical success factors for implementation included a requirement for clear communication, robust data collection, physician leadership and patience by all, especially implementation teams. CONCLUSIONS: Although successfully implemented, key lessons and critical success factors were learned related to change management, which if considered and applied, can reduce unanticipated consequences, improve uptake and benefit new models of care.

Single-entry models (SEMs) for scheduled services: Towards a roadmap for the implementation of recommended practices.

BACKGROUND: Long waiting times for elective services continue to be a challenging issue. Single-entry models (SEMs) are used to increase access to and flow through the healthcare system. This paper provides a roadmap for healthcare decision-makers, managers, physicians, and researchers to guide implementation and management of successful and sustainable SEMs. METHODS: The roadmap was informed by an inductive qualitative synthesis of the findings from a deliberative process (a symposium on SEMs, with clinicians, researchers, senior policy-makers, healthcare managers, and patient representatives) and focus groups with the symposium participants. RESULTS: SEMs are a promising strategy to improve the management of referrals and represent one approach to reduce waiting times. The SEMs roadmap outlines current knowledge about SEMs and critical success factors for SEMs' implementation and management. CONCLUSIONS: This SEM roadmap is intended to help clinicians, decision-makers, managers, and researchers interested in developing new or strengthening existing SEMs. We consider this roadmap to be a living document that will continue to evolve as we learn more about implementing and managing sustainable SEMs.

Patients as partners in Enhanced Recovery After Surgery: A qualitative patient-led study.

OBJECTIVES: Explore the experience of patients undergoing colorectal surgery within an Enhanced Recovery After Surgery (ERAS) programme. Use these experiential data to inform the development of a framework to support ongoing, meaningful patient engagement in ERAS. DESIGN: Qualitative patient-led study using focus groups and narrative interviews. Data were analysed iteratively using a Participatory Grounded Theory approach. SETTING: Five tertiary care centres in Alberta, Canada, following the ERAS programme. PARTICIPANTS: Twenty-seven patients who had undergone colorectal surgery in the last 12 months were recruited through purposive sampling. Seven patients participated in a codesign focus group to set and prioritise the research direction. Narrative interviews were conducted with 20 patients. RESULTS: Patients perceived that an ERAS programme should not be limited to the perioperative period, but should encompass the journey from diagnosis to recovery. Practical recommendations to improve the patient experience across the surgical continuum, and enhance patient engagement within ERAS included: (1) fully explain every protocol, and the purpose of the protocol, both before surgery and while in-hospital, so that patients can become knowledgeable partners in their recovery; (2) extend ERAS guidelines to the presurgery phase, so that patients can be ready emotionally, psychologically and physically for surgery; (3) extend ERAS guidelines to the recovery period at home to avoid stressful situations for patients and families; (4) consider activating a programme where experienced patients can provide peer support; (5) one size does not fit all; personalised adaptations within the standardised pathway are required.Drawing upon these data, and through consultation with ERAS Alberta stakeholders, the ERAS team developed a matrix to guide sustained patient involvement and action throughout the surgical care continuum at three levels: individual, unit and ERAS system. CONCLUSION: This patient-led study generated new insights into the needs of ERAS patients and informed the development of a framework to improve patient experiences and outcomes.