Evaluation Of Patient Engagement Research Articles

Real-World Evidence From a Digital Health Treatment Program for Female Urinary Incontinence: Observational Study of Outcomes Following User-Centered Product Design.

Urinary incontinence (UI) affects millions of women with substantial health and quality-of-life impacts. Supervised pelvic floor muscle training (PFMT) is the recommended first-line treatment. However, multiple individual and institutional barriers impede women's access to skilled care. Evidence suggests that digital health solutions are acceptable and may be effective in delivering first-line incontinence treatment, although these technologies have not yet been leveraged at scale. The primary objective is to describe the effectiveness and safety of a prescribed digital health treatment program to guide PFMT for UI treatment among real-world users. The secondary objectives are to evaluate patient engagement following an updated user platform and identify the factors predictive of success. This retrospective cohort study of women who initiated device use between January 1, 2022, and June 30, 2023, included users aged ≥18 years old with a diagnosis of stress, urgency, or mixed incontinence or a score of >33.3 points on the Urogenital Distress Inventory Short Form (UDI-6). Users are prescribed a 2.5-minute, twice-daily, training program guided by an intravaginal, motion-based device that pairs with a smartphone app. Data collected by the device or app include patient-reported demographics and outcomes, adherence to the twice-daily regimen, and pelvic floor muscle performance parameters, including angle change and hold time. Symptom improvement was assessed by the UDI-6 score change from baseline to the most recent score using paired 2-tailed t tests. Factors associated with meeting the UDI-6 minimum clinically important difference were evaluated by regression analysis. Of 1419 users, 947 met inclusion criteria and provided data for analysis. The mean baseline UDI-6 score was 46.8 (SD 19.3), and the mean UDI-6 score change was 11.3 (SD 19.9; P<.001). Improvement was reported by 74% (697/947) and was similar across age, BMI, and incontinence subtype. Mean adherence was 89% (mean 12.5, SD 2.1 of 14 possible weekly uses) over 12 weeks. Those who used the device ≥10 times per week were more likely to achieve symptom improvement. In multivariate logistic regression analysis, baseline incontinence symptom severity and maximum angle change during pelvic floor muscle contraction were significantly associated with meeting the UDI-6 minimum clinically important difference. Age, BMI, and UI subtype were not associated. This study provides real-world evidence to support the effectiveness and safety of a prescribed digital health treatment program for female UI. A digital PFMT program completed with visual guidance from a motion-based device yields significant results when executed ≥10 times per week over a period of 12 weeks. The program demonstrates high user engagement, with 92.9% (880/947) of users adhering to the prescribed training regimen. First-line incontinence treatment, when implemented using this digital program, leads to statistically and clinically substantial symptom improvements across age and BMI categories and incontinence subtypes.

Setting Industry Standards for Patient Engagement, Partnership, Allyship and Care: The Patient Vision Project

Background: Patient perspectives have shifted towards greater expectations of autonomy and personalized care, leading to growing demands for partnerships between patients, healthcare providers (HCPs), and industry. Such collaborations provide a mechanism to understand the unique needs of patient communities, which is particularly important for rare diseases, such as hereditary hemolytic anemias (HHAs). The Patient Vision Project (initiated and sponsored by Agios Pharmaceuticals) was launched in November 2021, aiming to establish a set of principles for defining industry standards in engagement with multiple stakeholders, including (but not limited to) HCPs, caregivers and patients with HHA. Methods: The Project consisted of 4 phases: In-depth discovery (company-wide survey, and one-to-one interviews with patient advocates, HCPs and company leaders), with the goal to understand perspectives on patient-centricity and areas of strength and opportunity to optimize patient engagementThematic analysis of discovery findings and recommendations to align on company commitment to develop a patient engagement model1-Day interactive workshop (patients, HCPs, HHA experts and Agios representatives) for feedback on modelDevelopment of an implementation plan The workshop included 31 participants (patients, HCPs, HHA experts and Agios representatives) divided into breakout groups to define traits of a patient ally, identify universal ally behaviors, discuss ways to support core areas for collaboration and commitment to patients, and provide input to industry on patient needs and expectations (Figure). Results: During the discovery phase, 116 of 152 (76%) Agios respondents completed the survey, and 7 Agios leaders and 8 HHA experts (HCPs, patients, and patient advocates) were interviewed. Responses to questions pertaining to patient-centricity emphasized patient partnership/prioritization, with 42% of the 152 responses favoring ongoing patient engagement to understand their needs, transparent communication, and identification of collaboration opportunities. On questions related to company engagement with patients, 93% felt connected to patients because of their work, 86% felt they added value, and 86% felt the company had a clear approach for patient engagement. Interviewees emphasized the importance for company leadership to prioritize patient-centricity, as well as the value of hearing the patient voice and meeting their needs, while being transparently connected to their lives, experiences, and priorities. Findings from the discovery phase led to the concept of a “patient ally”, along with 4 universal behaviors to define allyship: (1) Listening actively and openly; (2) Collaborating and communicating; (3) Fostering mutual respect and trust; (4) Honoring individuality while maintaining perspective. 3 core areas for demonstrating collaboration and commitment were also defined: (1) Providing credible education; (2) Facilitating community connection; and (3) Delivering support. Implementation of key learnings consisted of: Establishing an internal culture based on the patient ally mindsetCreating a cross-functional working group to establish meaningful strategies and aligned approaches based on actionable insights from patients and HCPsFounding a “Red Cell Revolution™” group of patients, caregivers and HCPs across three HHA indications (PK deficiency, Thalassemia and Sickle Cell Disease) and Agios representatives to define and collaborate on shared issues within the HHA communityMeasurement of patient engagement activities to monitor the intended positive impact on the patient community Conclusion: Inception of the Patient Vision Project stemmed from a growing awareness of the importance of the patient voice-understanding how patients want to be engaged-and a vision to create a transparent mechanism that supports industry partnerships with patients to improve the drug development process. Evaluating patient engagement from industry, HCPs, and patient perspectives enabled the strategic alignment and shaping of a vision for effective partnership. In addition to providing a path forward to the participants of the Project, this initiative challenges industry standards and provides a blueprint to other companies with a common goal of understanding patient needs to ultimately reduce disease burden and improve patient outcomes.

Patient Engagement and Provider Effectiveness of a Novel Sleep Telehealth Platform and Remote Monitoring Assessment in the US Military: Pilot Study Providing Evidence-Based Sleep Treatment Recommendations.

Sleep problems are common and costly in the US military. Yet, within the military health system, there is a gross shortage of trained specialist providers to address sleep problems. As a result, demand for sleep medicine care far exceeds the available supply. Telehealth including telemedicine, mobile health, and wearables represents promising approaches to increase access to high-quality and cost-effective care. The purpose of this study was to evaluate patient engagement and provider perceived effectiveness of a novel sleep telehealth platform and remote monitoring assessment in the US military. The platform includes a desktop web portal, native mobile app, and integrated wearable sensors (ie, a commercial off-the-shelf sleep tracker [Fitbit]). The goal of the remote monitoring assessment was to provide evidence-based sleep treatment recommendations to patients and providers. Patients with sleep problems were recruited from the Internal Medicine clinic at Walter Reed National Military Medical Center. Patients completed intensive remote monitoring assessments over 10 days (including a baseline intake questionnaire, daily sleep diaries, and 2 daily symptom surveys), and wore a Fitbit sleep tracker. Following the remote monitoring period, patients received assessment results and personalized sleep education in the mobile app. In parallel, providers received a provisional patient assessment report in an editable electronic document format. Patient engagement was assessed via behavioral adherence metrics that were determined a priori. Patients also completed a brief survey regarding ease of completion. Provider effectiveness was assessed via an anonymous survey. In total, 35 patients with sleep problems participated in the study. There were no dropouts. Results indicated a high level of engagement with the sleep telehealth platform, with all participants having completed the baseline remote assessment, reviewed their personalized sleep assessment report, and completed the satisfaction survey. Patients completed 95.1% of sleep diaries and 95.3% of symptom surveys over 10 days. Patients reported high levels of satisfaction with most aspects of the remote monitoring assessment. In total, 24 primary care providers also participated and completed the anonymous survey. The results indicate high levels of perceived effectiveness and identified important potential benefits from adopting a sleep telehealth approach throughout the US military health care system. Military patients with sleep problems and military primary care providers demonstrated high levels of engagement and satisfaction with a novel sleep telehealth platform and remote monitoring assessment. Sleep telehealth approaches represent a potential pathway to increase access to evidence-based sleep medicine care in the US military. Further evaluation is warranted.

MyHealthHub for older adult inpatients to reduce loneliness, and improve patient engagement and mental health: protocol of a pilot randomized controlled trial

Objectives Older Canadian adults make up 85% of hospital stays which are associated with increased loneliness, stress, anxiety, and/or depression. There is a need for novel approaches to reduce loneliness and mental health outcomes in older adult hospital inpatients to prevent further strain on an already overwhelmed healthcare system. Methods This is a pilot randomized controlled trial (RCT) exploring the efficacy of a bedside multimodal interaction system, myHealthHub, on loneliness, quality of life (QOL), patient engagement, and other mental health outcomes compared to an active control group in older adult inpatients (n = 60) from baseline to 5-days. Qualitative analyses will be conducted through semi-structured interviews with older adults (n = 8-10) and hospital staff, nurses, and clinicians (n = 4-5) facilitating the service to evaluate patient engagement and experience with myHealthHub. Results Not applicable. Conclusion This novel pilot clinical trial will obtain preliminary data on the efficacy of myHealthHub in reducing loneliness, QOL, patient engagement, and mental health outcomes in older adult inpatients. If successful, this could provide a potential means to improve patient experience in hospitals and reduce the burden and additional expense on the healthcare system.

“I think there has to be a mutual respect for there to be value”: Evaluating patient engagement in a national clinical trial on de-implementation of low value care

BackgroundThe evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patient engagement in a large Canadian research program focused on the de-implementation of low-value care. We aimed to evaluate the experience and impact of patient engagement in the study.MethodsAn online cross-sectional survey was administered using Microsoft Forms to (1) researchers and study staff and (2) patient partners. The survey was developed following iterative reviews by the project’s patient partnership council and evaluation committee. Survey content areas included opinions on patient engagement to date, including challenges to engagement and suggestions for improvement. Patient partners also evaluated the partnership council. Descriptive statistics including counts and percentages described Likert scale survey items, while open comments were analyzed using descriptive content analysis.ResultsThe survey response rate was 46% (17/37). There were positive attitudes about the value of patient engagement in this project. There was also a high degree of willingness to be involved with patient engagement in future projects, whether as a patient partner or as a researcher including patients on the research team. Most patient partners felt their contributions to the project were valued by researchers and study research staff. Open comments revealed that a co-design approach and full inclusion on the research team were integral to demonstrating the value of patient partner input. Areas for improvement included more frequent and ongoing communication among all team members, as well as earlier training about patient engagement, particularly addressing role expectations and role clarity.ConclusionsOur data revealed that despite some challenges, team members recognized the value of patient engagement in research and agreed project decisions had been impacted by patient partner input. Ongoing communication was highlighted as an area for improvement, as well as earlier training and ongoing support for all team members, but particularly researchers and study staff. In response to evaluation data, the team has reinstated a quarterly newsletter and plans to use specific patient engagement planning templates across study sites for all project activities. These tools should help make expectations clear for all team members and contribute to a positive patient engagement experience. Findings can inform patient engagement planning and evaluation for other health research projects.

Working together in health research: a mixed-methods patient engagement evaluation

BackgroundIn patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers.MethodsThe RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo.ResultsA total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study.ConclusionsThrough fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward.

Home pulse oximetry monitoring during the COVID-19 pandemic: An assessment of patient engagement and compliance

ObjectivesPatients with suspected COVID-19 remain at risk for clinical deterioration after discharge and may benefit from home oxygen saturation (SpO2) monitoring using portable pulse oximeter devices. Our study aims to evaluate patient engagement and compliance with a home SpO2 monitoring program. MethodsThis is a single center, prospective pilot study of patients being discharged from the ED or urgent care after evaluation of symptoms consistent with COVID-19. Subjects were given a portable pulse oximeter and instructed to obtain measurements at rest and with exertion twice daily for 14 days. Patients were contacted daily to collect recorded data. If attempts to contact the patient were unsuccessful for 3 consecutive days, patients were considered lost to follow up. The primary outcome of interest was patient engagement in the program which was defined as the percentage of patients that completed the 14-day study period, meaning they were not lost to follow up. Secondary outcomes included compliance with performing the SpO2 readings. Patient compliance was calculated as a percentage of completed readings out of the total expected readings. ResultsFifty patients were enrolled - 2 withdrew and 1 was a screen failure. Overall, engagement in the program was 46.8% with no significant difference between those who tested positive for SARS-CoV-2 versus those who tested negative (48.2% vs 45%, p = 0.831). Median compliance overall was 42.9% (IQR 22.22–78.57). Median compliance for the positive group was 50.0% (IQR 20–85.71) and 42.86% (IQR 22.92–76.44) for the negative group (p = 0.838). ConclusionOur study demonstrated that there was acceptable engagement and compliance in a 14-day home SpO2 monitoring program. These results support the use of home pulse oximetry monitoring in a select group of mildly ill patients with suspected COVID-19.

Examining Patient Engagement in Chatbot Development Approaches for Healthy Lifestyle and Mental Wellness Interventions: Scoping Review.

Chatbots are growing in popularity as they offer a range of potential benefits to end users and service providers. Our scoping review aimed to explore studies that used 2-way chatbots to support healthy eating, physical activity, and mental wellness interventions. Our objectives were to report the nontechnical (eg, unrelated to software development) approaches for chatbot development and to examine the level of patient engagement in these reported approaches. Our team conducted a scoping review following the framework proposed by Arksey and O'Malley. Nine electronic databases were searched in July 2022. Studies were selected based on our inclusion and exclusion criteria. Data were then extracted and patient involvement was assessed. 16 studies were included in this review. We report several approaches to chatbot development, assess patient involvement where possible, and reveal the limited detail available on reporting of patient involvement in the chatbot implementation process. The reported approaches for development included: collaboration with knowledge experts, co-design workshops, patient interviews, prototype testing, the Wizard of Oz (WoZ) procedure, and literature review. Reporting of patient involvement in development was limited; only 3 of the 16 included studies contained sufficient information to evaluate patient engagement using the Guidance for Reporting Involvement of Patients and Public (GRIPP2). The approaches reported in this review and the identified limitations can guide the inclusion of patient engagement and the improved documentation of engagement in the chatbot development process for future health care research. Given the importance of end user involvement in chatbot development, we hope that future research will more systematically report on chatbot development and more consistently and actively engage patients in the codevelopment process.

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems.

Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit. The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberationsand (4) toolkit web design. The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture changeand (8) patient outcomes and experience. Working Group members rated the final list for importance (1-5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports. The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work. Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.

Use of Voice-Assisted Technology to Enhance the Home Health Care Patient Experience.

One of the greatest challenges for older, homebound patients receiving health care is accessibility, particularly following a hospitalization. The current study evaluates the effects of using voice-activated technology in the homes of recently discharged patients and its effects on health care outcomes. Voice-based software was embedded in a smart device, which allowed patients to ask questions and receive answers about their own specific care plan. A pre-post study design was used. Forty-eight patients completed the pre and post survey. There was a 63% reduction in emergency department visits and a 26% reduction in physician calls. There was no change in the number of patients requiring hospitalization. More than one half of patients used the smart device daily for their health care needs. More than 70% of patients believed the device was helpful for their general health care needs and assisted in the achievement of care goals. This is the first study of its kind to evaluate patient engagement and outcomes after the use of a smart device with embedded health care directions. [Journal of Gerontological Nursing, 48(12), 17-24.].

"Nothing for Us Without Us": An Evaluation of Patient Engagement in an HIV Care Improvement Collaborative in the Caribbean.

Patient engagement is increasingly recognized as a key strategy to promote patient-centered care and accelerate health care improvements. Ensuring patient participation in improvement efforts is particularly important with stigmatized illnesses and marginalized populations. Despite the attention it has garnered, patient engagement is still not widely implemented and has not been well documented in global health literature. We implemented a patient-engagement strategy to involve people living with HIV in quality improvement efforts. As part of the Caribbean Regional Quality Improvement Collaborative, quality improvement teams from Barbados (1 team), Jamaica (20 teams), Suriname (3 teams), and Trinidad and Tobago (2 teams) engaged health care providers from care facilities and people living with HIV to serve as community representatives (CRs) to lead the improvement efforts alongside them. This strategy was evaluated via a mixed method design that included 2 rounds of semistructured, in-depth interviews with patients and providers. Findings suggest that the patient engagement strategy had several key strengths: it promoted the collection, use, and appreciation of patient input to inform health care improvements at the facility level; facilitated the empowerment of CRs; enhanced mutual understanding and empathy between CRs and providers; and helped to dispel HIV stigma and discrimination in health care settings. Moreover, both health care providers and CRs reported that CR opinions and perspectives are as important as providers' and that CR participation in the improvement process was beneficial.

Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study

IntroductionPatient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation...

0381 High levels of patient engagement with a novel sleep telehealth platform in the US military

Abstract Introduction Despite very high prevalence and documented adverse consequences of insufficient and disturbed sleep in the US military, there are well-recognized barriers limiting access to evidence-based sleep interventions within the military health system (MHS). Chief among these is an insufficient number of trained sleep specialists and sleep centers. As part of a larger implementation effort, the purpose of this pilot study was to evaluate patient engagement with a novel sleep telehealth platform at a busy military treatment facility. Methods The sleep telehealth platform consists of an online web portal for patients and providers, a secure mobile app, and integrated wearable sensors using an off the shelf commercial solution (COTS; in this study, Fitbit). The purposes of this platform are to 1) help primary care managers (PCMs) assess sleep complaints, 2) empower patients and PCMs to make evidence-based sleep treatment decisions, 3) deliver evidence-based behavioral sleep treatments via mobile devices, and 4) connect patients with sleep specialists in virtual or physical sleep centers. Participants were recruited from the Internal Medicine clinic and the Sleep Disorders Center at Walter Reed National Military Medical Center (WRNMMC). Inclusion criteria included ages of 18-75 years and self or provider referral for sleep problems, including insufficient sleep duration. In addition to wearing the COTS sleep tracker, participants completed a baseline assessment and 2x/daily diaries for ten days, and a brief satisfaction survey. Results Participants included 35 patients (57% female, mean age=44.7 years). One hundred percent of participants wore the COTS sleep tracker and completed the post-monitoring assessment. Satisfaction survey results indicated that 96.7% of participants found completing the 10-day continuous sleep monitoring assessments to be “easy” or “very easy,” and 96.7% of those who completed the monitoring expressed a preference for app-based sleep treatment either alone or in conjunction with virtual or in person care. Finally, participants offered suggestions to optimize the app and platform for pending clinical implementation. Conclusion Results of this pilot study demonstrate high levels of patient engagement with the sleep telehealth platform. Given the large number of patients seeking treatment and the shortage of trained specialist providers, sleep telehealth is a promising pathway to increase access to evidence-based care. Support (If Any) This research was supported by an investigator-initiated research award from the Department of Defense (via the Medical Technology Enterprise Consortium) to the University of Maryland, Baltimore (PI: EMW).

Outcomes from Engagement and Use of a Prescription Digital Therapeutic to Treat Opioid Use Disorder: A Real-World Pilot Study

The opioid epidemic in the United States is getting worse: in 2020 opioid overdose deaths hit an all-time high of 92,183. This underscored the need for more effective and readily available treatments for patients with opioid use disorder (OUD). Prescription digital therapeutics (PDTs) are FDA-authorized treatments delivered via mobile devices (eg, smartphones). A real-world pilot study was conducted in an outpatient addiction treatment program to evaluate patient engagement and use of a PDT for patients with OUD. The objective was to assess the ability of the PDT to improve engagement and care for patients receiving buprenorphine medication for opioid use disorder (MOUD). Patients with OUD treated at an ambulatory addiction treatment clinic were invited to participate in the pilot. The reSET-O PDT is comprised of 31 core therapy lessons plus 36 supplementary lessons, plus contingency management rewards. Patients were asked to complete at least 4 lessons per week, for 12-weeks. Engagement and use data were collected via the PDT and rates of emergency room data were obtained from patient medical records. Data were compared to a similar group of 158 OUD patients treated at the same clinic who did not use the PDT. Abstinence data were obtained from deidentified medical records. Pilot participants (N=40) completed a median of 24 lessons: 73.2% completed at least 8 lessons and 42.5% completed all 31 core lessons. Pilot participants had significantly higher rates of abstinence from opioids in the 30days prior to discharge from the program than the comparison group: 77.5% vs 51.9% (P<.01). Clinician-reported treatment retention for pilot participants vs the comparison group was 100% vs 70.9% 30days after treatment initiation (P<.01), 87.5% vs 55.1% at 90days post-initiation (P<.01), and 45.0% vs 38.6% at 180days post-initiation (P=.46). Emergency room visits within 90days of discharge from the addiction program were significantly reduced in pilot participants compared to the comparison group (17.3% vs 31.7%, P<.01). These results demonstrate substantial engagement with a PDT in a real-world population of patients with OUD being treated with buprenorphine. Abstinence and retention outcomes were high compared to patients not using the PDT. These results demonstrate the potential value of PDTs to improve outcomes among patients with OUD, a population for which a significant need for improved treatments exists. Trinity Health Innovation and Pear Therapeutics Inc.

Weill Cornell Medicine Wellness Qlinic: Adapting the Student-Run Clinic Model to Expand Mental Health Services and Medical Education.

The Weill Cornell Medicine Wellness Qlinic (Wellness Qlinic) is a student-run mental health clinic serving the lesbian, gay, bisexual, transgender, and queer (LGBTQ +) community in New York City. Student-run clinics have successfully provided primary care to underserved communities experiencing barriers to accessing health care. Psychiatric evaluation and medication management have also been implemented in several student-run clinics, but providing sustainable psychotherapy services has been a challenge. In this paper, we present a student-run mental health program incorporating interdisciplinary trainees to provide robust short-term psychiatric treatment, including individual psychotherapy, medication management, and group therapy. Results of a chart-review study to evaluate patient engagement and treatment outcomes are presented. The Wellness Qlinic’s treatment model resulted in 90% patient retention and positive clinical outcomes for patients while addressing an education and training gap in LGBTQ + mental health for multidisciplinary mental health care providers.

Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.

While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities. A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop. The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a "menu" for evaluating long-term impacts was created. Example metrics include "Industry representatives' understanding of patients' unmet needs;" "Feeling of trust between stakeholders;" and "Feeling of preparedness." "Alignment of research programs with patients' needs" was the highest-ranked metric for long-term impact. Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts.

Patient engagement in healthcare: a preliminary set of measures to evaluate patient engagement in the European Reference Networks.

Aim: The European Reference Networks (ERNs) provide clinicians and patients the opportunity to collaborate at EU level to improve diagnosis, care and treatment for people living with rare and complex conditions. However, building a partnership culture to systematically involve patients in ERN activities and decision-making structures is challenging, partly because the role of patient representatives and the value of this collaboration are not always understood. The objective of this project was to develop an evaluation framework to assess the impact of patient engagement in the ERNs and to provide evidence on the value of patient-clinician partnership. Methods: The evaluation was developed by EURORDIS and patient representatives involved in the ERNs (ePAG advocates) through a participatory and iterative process. The work was organised in three different phases: (1) clarify roles and identify common goals for ePAG advocates’ engagement in the ERNs; (2) define a set of measures; and (3) test the measures in three different ePAGs (European Patient Advocacy Groups). Results: The project allowed developing a common understanding among ePAG advocates of their role and goals in the ERNs and defining a patient-driven evaluation framework to assess their level of engagement in the ERNs’ activities and how effectively they were working to fulfil their role. Conclusion: Engaging with ERN clinicians to refine the framework would probably render it more relevant to the reality and priorities of the specific ERNs and more valuable as a tool to build a strong partnership culture. Such an evaluation framework could be integrated into the ERNs’ quality improvement system to ensure that the networks’ activities are driven by and remain responsive to patients’ needs.

Evaluation of Qatar's First Cardiac Rehabilitation Program: A Brief Report.

Background:There are few studies on the impact of cardiac rehabilitation (CR) in the Eastern Mediterranean Region (EMR), where the burden of risk factors and context is somewhat different from Western countries where much of the evidence is derived.Objective:To evaluate patient engagement in, and outcomes associated with, participation in Qatar’s first and only CR program, from inception.Methods:This was a retrospective, observational study of patients referred to Heart Hospital’s CR program from January 2013-September, 2018. The program offered 3 sessions/week over 6–12 weeks, depending on patient risk. An initial assessment was performed, and outcomes (i.e., functional capacity, risk factors, and psychosocial well-being (quality of life [SF-36] and depressive symptoms) were re-assessed post-program in those who did not drop-out. Session attendance was recorded.Results:682 patients enrolled; they attended 77.6% of prescribed sessions; 554 (81.2%) completed the program and post-assessment. Improvements in functional capacity were statistically and clinically meaningful (METs 9.3 ± 3.3 pre and 11.1 ± 3.7 post; p < 0.001). There were significant improvements in body mass index (28.7 ± 5.2 kg/m2 pre and 28.2 ± 5.4 post; p < 0.001), waist circumference (102.8 ± 13.0 cm pre and 101.8 ± 13.2 post; p < 0.001), low-density lipoprotein (LDL 1.9 ± 0.9 mmol/L pre and 1.6 ± 0.8 post; p = < 0.001), total cholesterol (3.6 ± 1.1 mmol/L pre and 3.3 ± 0.8 post; p < 0.001), systolic blood pressure (SBP 128.5 ± 17.7 mmHg pre and 123.7 ± 14.8 post; p < 0.001), hemoglobin A1c (6.8 ± 1.6% pre and 6.5 ± 1.3 post; p < 0.001) and depressive symptoms (Cardiac Depression Scale score 78.3 ± 23.9 pre and 66.3 ± 21.3 post; p < 0.001). Improvements on 7 of the 8 quality of life domains were also observed (all p < .05; e.g., physical functioning 68.2 ± 24.0 pre and 74.9 ± 24.4 post).Conclusion:The new Qatari CR program is very engaging to patients, and resulted in clinically significant risk factors (LDL, SBP, and cholesterol) as well as functional capacity and health-related quality of life improvements, which likely translate to reduced morbidity and mortality.

160 Home Pulse Oximetry Monitoring for Patients With Suspected COVID-19: A Pilot Assessment of Patient Engagement and Compliance

Patients infected with SARS-CoV-2 who are evaluated in the emergency department but well enough to go home are still at risk for clinical deterioration. They may benefit from a program to monitor oxygen levels at home using portable pulse oximeter devices. Our study aims to evaluate patient engagement in and compliance with a home pulse oximetry monitoring program. The results of this study will be important to inform development and operationalization of remote patient monitoring programs.

Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics.

BackgroundPatient engagement is becoming more customary in medicine development. However, embedding it in organizational decision‐making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning.MethodsA consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi‐phase participatory process, including analysis of its application in 24 cases.ResultsThe framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision‐making contextual factors. Case study findings show a wide variation in use of metrics. There is no ‘one size fits all’ set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations.ConclusionIntroducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed.Patient contributionFive patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.