The voice of patients in system redesign: A case study of redesigning a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis.

BACKGROUND: The published literature demands examples of health-care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. METHODS: This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health-care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)-centralized intake. The phenomenon of patient engagement using "patient and community engagement researchers" (PaCERs) in research and the process of redesigning centralized intake were selected as the case. In-depth evaluation of the case was undertaken through the triangulation of findings from the document review and participants' reflection on the case. RESULTS: In this case, patients and PaCERs participated in multiple activities including an initial meeting of key stakeholders to develop the project vision; a patient-to-patient PaCERs study to gather perspectives of patients with RA on the challenges they face in accessing and navigating the health-care system, and what they see as key elements of an effective system that would be responsive to their needs; the development of an evaluation framework for future centralized intake; and the choice of candidate centralized intake strategies to be evaluated. CONCLUSIONS: The described feasible multistep approach to active patient engagement in health-care system redesign contributes to an understanding of the application of this complex phenomenon in practice. Therefore, the manuscript serves as one more step towards a patient-centred health-care system that is redesigned with active patient engagement.

Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design.

BACKGROUND: To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake. METHODS: We used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey. RESULTS: Patient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients' perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items. CONCLUSION: The process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.

Patient perspectives on engagement in decision-making in early management of non-ST elevation acute coronary syndrome: a qualitative study.

BACKGROUND: Surveys of patients suggest many want to be actively involved in treatment decisions for acute coronary syndromes. However, patient experiences of their engagement and participation in early phase decision-making have not been well described. METHODS: We performed a patient led qualitative study to explore patient experiences with decision-making processes when admitted to hospital with non-ST elevation acute coronary syndrome. Trained patient-researchers conducted the study via a three-phase approach using focus groups and semi-structured interviews and employing grounded theory methodology. RESULTS: Twenty patients discharged within one year of a non-ST elevation acute coronary syndrome participated in the study. Several common themes emerged. First, patients characterized the admission and early treatment of ACS as a rapidly unfolding process where they had little control. Participants felt they played a passive role in early phase decision-making. Furthermore, participants described feeling reduced capacity for decision-making owing to fear and mental stress from acute illness, and therefore most but not all participants were relieved that expert clinicians made decisions for them. Finally, once past the emergent phase of care, participants wanted to retake a more active role in their treatment and follow-up plans. CONCLUSIONS: Patients admitted with ACS often do not take an active role in initial clinical decisions, and are satisfied to allow the medical team to direct early phase care. These results provide important insight relevant to designing patient-centered interventions in ACS and other urgent care situations.

Exploring patient centredness, communication and shared decision-making under a new model of care: Community rehabilitation in canada.

Patient-centred care and patient engagement in healthcare and health research are widely mandated by funders, health systems and institutions. Increasingly, shared decision-making (SDM) is recognised as promoting patient-centred care. We explore this relationship by studying SDM in the context of integrating novel patient-centred policies in community rehabilitation. There is little research on SDM in rehabilitation, and less so in the critical community context. Patient co-investigators led study co-design. We aimed to describe how patients and providers experience SDM at community rehabilitation sites that adopted a novel, patient-centred Rehabilitation Model of Care (RMoC). Guided by focused ethnography, we conducted focus groups and interviews. Patient and professional participants were recruited from 10 RMoC early-adopter community rehabilitation sites. Sites varied in geography, patient population and provider disciplines. Patient and community engagement researchers used a set-collect-reflect method to document patient perspectives. Researchers captured provider perspectives using a semi-structured question guide. We completed 11 focus groups and 18 interviews (n = 45 providers, n = 17 patients). We found that most early-adopter providers spoke in a shared, patient-first language that focused on patient readiness, barriers and active listening. Congruent patient perceptions reflected inclusion in decision-making, goal setting and positive relationships. Many patients queried how care would become and remain accessible before and after community rehabilitation care respectively. Remaining connected while in the community was described as important to patients. Providers identified barriers like time, team dynamics and lack of clarity on the RMoC aims, which challenged the initiative's long-term sustainability. Policy innovations can promote SDM and communication through multiple strategies and training to facilitate candid, encouraging conversations. Sustainability of SDM gains is paramount. Most providers moved beyond tokenistic engagement, but competing responsibilities and team member resistance could thwart continuity. Further research is needed to empirically assess respectful and compassionate communication and SDM in community rehabilitation long term.

Patients' Use of Mobile Health for Self-management of Knee Osteoarthritis: Results of a 6-Week Pilot Study.

BACKGROUND: In a previous study, a prototype mobile health (mHealth) app was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA). OBJECTIVE: This study aims to evaluate the overall usability, quality, and effectiveness of the mHealth app prototype for aiding knee OA self-management from the perspectives of patients with OA and health care providers (HCPs). METHODS: Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth app prototype that was codeveloped with patients and HCPs. We recruited adult patients aged ≥20 years with early knee OA (n=18) who experienced knee pain on most days of the month at any time in the past and HCPs (n=7) to participate. In the qualitative assessment, patient and HCP perspectives were elicited on the likeability and usefulness of app features and functionalities and the perceived impact of the app on patient-HCP communication. The quantitative assessment involved evaluating the app using usability, quality, and effectiveness metrics. Patient baseline assessments included a semistructured interview and survey to gather demographics and assess the quality of life (European Quality-of-Life 5-Dimension 5-Level Questionnaire [EQ-5D-5L]) and patient activation (patient activation measure [PAM]). Following the 6-week usability trial period, a follow-up survey assessed patients' perceptions of app usability and quality and longitudinal changes in quality of life and patient activation. Semistructured interviews and surveys were also conducted with HCPs (n=7) at baseline to evaluate the usability and quality of the app prototype. RESULTS: Interviews with patients and HCPs revealed overall positive impressions of the app prototype features and functionalities related to likeability and usefulness. Between the baseline and follow-up patient assessments, the mean EQ-5D-5L scores improved from 0.77 to 0.67 (P=.04), and PAM scores increased from 80.4 to 87.9 (P=.01). Following the 6-week evaluation, patients reported a mean System Usability Scale (SUS) score of 57.8, indicating marginal acceptability according to SUS cutoffs. The mean number of goals set during the usability period was 2.47 (SD 3.08), and the mean number of activities completed for knee OA self-management during the study period was 22.2 (SD 17.8). Spearman rank correlation (rs) calculations revealed that the follow-up PAM scores were weakly correlated (rs=-0.32) with the number of goals achieved and the number (rs=0.19) of activities performed during the 6-week usability period. HCPs reported a mean SUS score of 39.1, indicating unacceptable usability. CONCLUSIONS: This evidence-based and patient-centered app prototype represents a potential use of mHealth for improving outcomes and enhancing conservative care by promoting patient activation and patient-HCP communication regarding OA management. However, future iterations of the app prototype are required to address the limitations related to usability and quality.

Co-Design in the Development of a Mobile Health App for the Management of Knee Osteoarthritis by Patients and Physicians: Qualitative Study.

BACKGROUND: Despite a doubling of osteoarthritis-targeted mobile health (mHealth) apps and high user interest and demand for health apps, their impact on patients, patient outcomes, and providers has not met expectations. Most health and medical apps fail to retain users longer than 90 days, and their potential for facilitating disease management, data sharing, and patient-provider communication is untapped. An important, recurrent criticism of app technology development is low user integration design. User integration ensures user needs, desires, functional requirements, and app aesthetics are responsive and reflect target user preferences. OBJECTIVE: This study aims to describe the co-design process for developing a knee osteoarthritis minimum viable product (MVP) mHealth app with patients, family physicians, and researchers that facilitates guided, evidence-based self-management and patient-physician communication. METHODS: Our qualitative co-design approach involved focus groups, prioritization activities, and a pre-post quality and satisfaction Kano survey. Study participants included family physicians, patient researchers and patients with knee osteoarthritis (including previous participants of related collaborative research), researchers, key stakeholders, and industry partners. The study setting was an academic health center in Southern Alberta. RESULTS: Distinct differences exist between what patients, physicians, and researchers perceive are the most important, convenient, desirable, and actionable app functional requirements. Despite differences, study participants agreed that the MVP should be electronic, should track patient symptoms and activities, and include features customized for patient- and physician-identified factors and international guideline-based self-management strategies. Through the research process, participants negotiated consensus on their respective priority functional requirements. The highest priorities were a visual symptom graph, setting goals, exercise planning and daily tracking, and self-management strategies. The structured co-design with patients, physicians, and researchers established multiple collaborative processes, grounded in shared concepts, language, power, rationale, mutual learning, and respect for diversity and differing opinions. These shared team principles fostered an open and inclusive environment that allowed for effective conceptualization, negotiation, and group reflection, aided by the provision of tangible and ongoing support throughout the research process, which encouraged team members to question conventional thinking. Group-, subgroup-, and individual-level data helped the team reveal how and for whom perspectives about individual functional requirements changed or remained stable over the course of the study. This provided valuable insight into how and why consensus emerged, despite the presence of multiple and differing underlying rationales for functional requirement prioritization. CONCLUSIONS: It is feasible to preserve the diversity of perspectives while negotiating a consensus on the core functional requirements of an mHealth prototype app for knee osteoarthritis management. Our study sample was purposely constructed to facilitate high co-design interactivity. This study revealed important differences between the patient, physician, and researcher preferences for functional requirements of an mHealth app that did not preclude the development of consensus.

Models of Arthritis Care: A Systems-level Evaluation of Acceptability as a Dimension of Quality of Care.

OBJECTIVE: To describe a systems-level baseline evaluation of central intake (CI) and triage systems in arthritis care within Alberta, Canada. The specific objectives were to (1) describe a process for systems evaluation for the provision of arthritis care; (2) report the findings of the evaluation for different clinical sites that provide arthritis care; and (3) identify opportunities for improving appropriate and timely access based on the findings of the evaluation. METHODS: The study used a convergent mixed methods design. Surveys and semistructured interviews were the main data collection methods. Participants were recruited through 2 rheumatology clinics and 1 hip and knee clinic providing CI and triage, and included patients, referring physicians, specialists, and clinic staff who experienced CI processes. RESULTS: A total of 237 surveys were completed by patients (n = 169), referring physicians (n = 50), and specialists (n = 18). Interviews (n = 25) with care providers and patients provided insights to the survey data. Over 95% of referring physicians agreed that the current process of CI was satisfactory. Referring physicians and specialists reported issues with the referral process and perceived support in care for wait-listed patients. Patients reported positive experiences with access and navigation of arthritis care services but expressed concerns around communication and receiving minimal support for self-management of their arthritis before and after receiving specialist care. CONCLUSION: This baseline evaluation of CI and triage for arthritis care indicates satisfaction with the service, but areas that require further consideration are referral completion, timely waiting lists, and further supporting patients to self-manage their arthritis.

A modified Delphi and cross-sectional survey to facilitate selection of optimal outcomes and measures for a systematic review on geriatrician-led care models.

OBJECTIVE: The objective of this study was to identify relevant outcomes and measures to inform a systematic review (SR) on the comparative effectiveness of geriatrician-led care models. STUDY DESIGN AND SETTING: In the modified Delphi to select outcomes for inclusion in the SR, knowledge users (KUs) from Ontario, Alberta, and Saskatchewan rated outcome importance using a Likert scale. A survey was then completed by geriatricians to determine optimal measures for selected outcomes. Findings were analyzed using frequencies, means, and standard deviations (SDs). RESULTS: Thirty-three KUs (patients, caregivers, policymakers and geriatricians) rated 27 outcomes in round 1 of the modified Delphi. Top-rated outcomes included function (mean 6.85 ± SD 0.36), cognition (6.47 ± SD 0.72), and quality of life (6.38 ± SD 0.91). Twenty-three KUs participated in round 2 and rated 24 outcomes. Top-rated outcomes in round 2 were function (6.87 ± SD 0.34), quality of life (6.45 ± SD 1.10), and cognition (6.43 ± SD 0.73). The survey was completed by 22 geriatricians and the highest ranked measures were Activities of Daily Living (function), Mini-Mental State Examination (cognition), and the Medical Outcomes Study SF-36 (quality of life). CONCLUSION: We identified the most relevant outcomes and measures for patients, caregivers, policymakers, and geriatricians, allowing us to tailor the SR to KU needs.

Qualitative study to elicit patients' and primary care physicians' perspectives on the use of a self-management mobile health application for knee osteoarthritis.

OBJECTIVE: To elicit perspectives of family physicians and patients with knee osteoarthritis (KOA) on KOA, its treatment/management and the use of a mobile health application (app) to help patients self-manage their KOA. DESIGN: A qualitative study using Cognitive Task Analysis for physician interviews and peer-to-peer semistructured interviews for patients according to the Patient and Community Engagement Research (PaCER) method. SETTING: Primary care practices and patient researchers at an academic centre in Southern Alberta. PARTICIPANTS: Intentional sampling of family physicians (n=4; 75% women) and patients with KOA who had taken part in previous PaCER studies and had experienced knee pain on most days of the month at any time in the past (n=5; 60% women). RESULTS: Physician and patient views about KOA were starkly contrasting. Patient participants expressed that KOA seriously impacted their lives and lifestyles, and they wanted their knee pain to be considered as important as other health problems. In contrast, physicians uniformly conceptualised KOA as a relatively minor health problem, although they still recognised it as a painful condition that often limits patients' activities. Consequently, physicians did not regard KOA as a condition to be proactively and aggressively managed. The gap between physicians' and patients' conceptualisation of KOA and its treatment extended to the use of an app for self-management. While patients were supportive of the app, physicians were sceptical of its use and focused more on accountability and patient resources. CONCLUSIONS: The clear discord between physicians' mental models and patients' lived experience and perceived needs around KOA emphasised a gap in understanding and communication about treatment and management of KOA. As such, this preliminary and formative research will inform a codesign approach to develop an app that will act as a communications tool between patients and physicians, enabling patient-physician discussions regarding modifiable self-management options based on a patient's perspectives and needs.

Engaging knowledge users in a systematic review on the comparative effectiveness of geriatrician-led models of care is possible: A cross-sectional survey using the Patient Engagement Evaluation Tool.

BACKGROUND: A systematic review (SR) was conducted to evaluate the comparative effectiveness of geriatrician-led models of care, and an integrated knowledge translation (iKT) approach facilitated SR relevance. Activities to engage knowledge users (KUs) in the SR were evaluated for perceived level of engagement. STUDY DESIGN AND SETTING: KUs included patients, caregivers, geriatricians, and policymakers from three Canadian provinces. Activities included 1) modified Delphi to select outcomes; 2) cross-sectional survey to select outcome measures, and 3) in-person meeting to discuss SR findings. KU engagement was assessed using the Patient Engagement Evaluation Tool (PEET) after the second and third activities. KUs rated the extent of successful engagement using a 7-point Likert scale ranging from "no extent" to "very large extent." RESULTS: In total, 15 KUs completed the PEET: eight geriatricians, four policymakers, two patients, and one caregiver. Median engagement scores across all activities (median range: 6.00-6.50) indicated that KUs felt engaged. Differences were observed for activity type; perceived engagement at in-person meeting resulted in higher meta-criteria scores for trust (P = 0.005), legitimacy (P = 0.003), fairness (P = 0.013), and competency (P = 0.035) compared with online activities. CONCLUSIONS: KUs can be engaged meaningfully in SR processes. Their perceived engagement was higher for in-person than for online activities.

Support for Living a Meaningful Life with Osteoarthritis: A Patient-to-Patient Research Study.

OBJECTIVE: This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients. METHODS: Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study. OA patients (N = 25) participated in a three-step peer-to-peer process: a focus group clarified and explored the topic ("set"), and guided the creation of the interview guide used in the second phase ("collect"). Using a collaborative analysis process, the researchers identified eight concepts that they then brought to a last focus group ("reflect"). Here, participants reviewed the findings, identifying implications for arthritis care in Alberta, Canada. RESULTS: An overarching theme of "supporting us in managing a meaningful life with OA" was underpinned by three components of quality care: (1) right knowledge-specific and detailed knowledge and information; (2) right professional support-ongoing access to health professionals with OA expertise; and (3) right professional relationship-a partnership with health professionals who help them develop and revise personal self-management plans. CONCLUSION: Peer-to-peer research informed and challenged the research team and stakeholders to consider the need for upstream support for OA patients. Results are helping to transform arthritis care, shifting the health system from an acute episodic model to one that meets the needs of the growing number of patients with chronic diseases.