Patient Engagement Strategies Research Articles

Exploring how to widen the acceptability of public health interventions: a systematic review protocol

IntroductionHealth interventions that require significant change to individual lifestyles or social norms can pose a challenge for widespread public acceptability and uptake. At the same time, over the last two...

Self-Monitoring Practices and Use of Self-Monitoring Technologies by People with Rheumatic and Musculoskeletal Diseases: An International Survey Study

Background/Objectives: Digital health applications (DHAs) promise to improve disease self-management, but adherence remains suboptimal. We aimed to explore self-monitoring practices of rheumatic and musculoskeletal diseases (RMD) patients. A web-survey was conducted over 7 months including RMD patients to study their self-monitoring practices and the potential of DHAs. Methods: Health, sociodemographic, and technology adherence indicators were retrieved for comparison. Regression analyses and unsupervised profiling were performed to investigate multiple patient profiles. Results: From 228 responses gathered, most reported willingness to use DHAs to monitor their condition (78% agreement), although the majority rarely/never tracked symptoms (64%), often due to stable condition or no perceived value (62%). Of those tracking regularly, 52% used non-digital means. Participants with regular self-monitoring practices were more open to use a self-monitoring app (OR = 0.8 [0.6, 0.9]; p = 0.008) and be embedded in multidisciplinary care (OR = 1.4 [1.1, 1.6]; p < 0.001), but showed worse health status (g = 0.4; p = 0.006). Cluster analyses revealed three distinct groups of reasons for not tracking regularly (χ2 = 174.4; p < 0.001), two characterised by perceived low disease activity. Conclusions: Effective use of DHAs remains limited and non-digital means prevail in symptom monitoring. Findings suggest that better patient engagement strategies and passive monitoring should be adopted in early development stages of DHAs for better long-term disease self-care.

Otolaryngic Allergy Patient Journey Mapping: A Framework for Allergy Immunotherapy Adherence.

Allergen-specific immunotherapy (AIT) is an effective treatment for allergic disease but requires long treatment duration and premature cessation is of significant concern. Drivers of premature cessation remain poorly understood and no predictive models currently exist. We hypothesized that a novel patient journey map and de novo real-time patient electronic health status instruments (eHSIs) could effectively capture patient perceived cost, commitment, and treatment benefit to identify individual patients at risk for premature AIT cessation. Cross-Sectional Observational Study. A single Otolaryngology allergy immunotherapy (AIT) program was studied over 5 years. Instances of premature cessation were classified. An Otolaryngic Allergy Patient Journey Map was developed to identify and target automated, real-time, patient-reported, electronic health status instrument responses. Data capture was robust, with 61,406 data points collected and an eHSI survey completion rate of 81.3%. However, based on correlation analysis and logistic regression alone, real-time eHSI responses were not predictive of individual patient premature AIT cessation. A total of 597 AIT patients discontinued treatment prematurely: 64.4% stopping within the first year. Specifically, 74.0%-76.3% of subcutaneous AIT patients and 88.5%-100% of sublingual AIT patients did not complete the minimum recommended treatment duration of 3 years. Patient journey mapping can aid in the design of longitudinal care models and patient engagement strategies. Yet, eHSI patient responses of perception of AIT cost, benefit, and convenience did not correlate with the likelihood of premature treatment cessation. Our imperfect clinical intuition may not account for the dynamic drivers of premature AIT discontinuation. Future development of predictive tools feed by large patient-centric data sets may be incorporated into routine practice resulting in delivery of a more streamlined and personalized approach with reduced premature AIT cessation, improved outcomes, and reduced health care expenditures. NA Laryngoscope, 2024.

Perception of Medication Safety-Related Behaviors Among Different Age Groups: Web-Based Cross-Sectional Study.

Previous research and safety advocacy groups have proposed various behaviors for older adults to actively engage in medication safety. However, little is known about how older adults perceive the importance and reasonableness of these behaviors in ambulatory settings. This study aimed to assess older adults' perceptions of the importance and reasonableness of 8 medication safety behaviors in ambulatory settings and compare their responses with those of younger adults. We conducted a survey of 1222 adults in the United States using crowdsourcing to evaluate patient behaviors that may enhance medication safety in community settings. A total of 8 safety behaviors were identified based on the literature, such as bringing medications to office visits, confirming medications at home, managing medication refills, using patient portals, organizing medications, checking medications, getting help, and knowing medications. Respondents were asked about their perception of the importance and reasonableness of these behaviors on a 5-point Likert rating scale in the context of collaboration with primary care providers. We assessed the relative ranking of behaviors in terms of importance and reasonableness and examined the association between these dimensions across age groups using statistical tests. Of 1222 adult participants, 125 (10.2%) were aged 65 years or older. Most participants were White, college-educated, and had chronic conditions. Older adults rated all 8 behaviors significantly higher in both importance and reasonableness than did younger adults (P<.001 for combined behaviors). Confirming medications ranked highest in importance (mean score=3.78) for both age groups while knowing medications ranked highest in reasonableness (mean score=3.68). Using patient portals was ranked lowest in importance (mean score=3.53) and reasonableness (mean score=3.49). There was a significant correlation between the perceived importance and reasonableness of the identified behaviors, with coefficients ranging from 0.436 to 0.543 (all P<.001). Older adults perceived the identified safety behaviors as more important and reasonable than younger adults. However, both age groups considered a behavior highly recommended by professionals as the least important and reasonable. Patient engagement strategies, common and specific to age groups, should be considered to improve medication safety in ambulatory settings.

Effective Patient Engagement in Private Healthcare Institutions in Riyadh: An Analysis of Management Strategies

The healthcare sector in Saudi Arabia is undergoing a remarkable transformation driven by factors such as population growth and rising disposable income. This has led to a significant surge in demand for private healthcare services, particularly in major cities like Riyadh. While catering to the needs of a growing patient base, there is an urgent need to ensure patient-centered care to enhance service quality and satisfaction. Multiple research studies have affirmed the positive impact of patient engagement. Studies consistently demonstrate that patients actively involved in their healthcare decisions experience improved quality of life, better adherence to treatment, and reduced hospital readmission rates. This ultimately leads to improved health outcomes and reduced overall healthcare costs. Despite these well-established benefits, many private healthcare institutions in Riyadh struggle to effectively integrate patient engagement strategies into their practices. This implementation gap necessitates a deeper understanding of the factors influencing these efforts. This study aims to address this pressing need by investigating the factors affecting patient engagement initiatives within private healthcare institutions in Riyadh. The study will explore the influence of three key domains: Digital Technology: The increasing reliance on digital tools in healthcare holds the potential to revolutionize patient engagement. This study will explore how technology platforms, telemedicine applications, and patient portals can facilitate patient engagement. Organizational Leadership: Leadership plays a pivotal role in fostering a patient-centered care culture. This research will examine how leadership styles, commitment to patient engagement, and resource allocation impact patient engagement initiatives. Organizational Culture: The overall culture of a healthcare institution significantly influences patient interactions. This study will explore how factors such as communication practices, staff training, and patient empowerment within the organizational culture shape patient engagement. By examining these three domains, the study aims to provide valuable insights into the factors that influence patient engagement in private healthcare settings in Riyadh. The findings will contribute to the development of effective strategies for enhancing patient engagement and improving overall healthcare quality.

Qualitative Study Guiding the Design of a Person-Centered Shared Medical Appointment Model to Optimize Diabetes Care Delivery.

The purpose of the study was to explore the shared medical appointment model (SMA) with youth with type 2 diabetes (T2DM) and their caregivers to identify health education needs, access barriers, and recommendations for intervention design. Patient and caregiver focus group interviews were conducted in English and Spanish to address these objectives: (1) identify barriers to participation in group sessions, (2) identify barriers to diabetes self-management, and (3) prioritize preference for SMA themes. Qualitative analysis identified strategies for patient recruitment and engagement and recommendations for curriculum design of a future SMA model for youth with T2DM. Both adolescents and caregivers supported the development of an SMA model. Adolescents expressed concerns of initial discomfort and nervousness, whereas young adults described stigma as the main barrier to joining a group. Patients emphasized the importance of prioritizing youth comfort and families' convenience. Early adolescents and young adults preferred autonomy in the choice to join a group, whereas mid adolescents and caregivers preferred that the caregivers make that decision. Participants recommended nine topics regarding barriers to diabetes care. The topics that received the most enthusiasm were nutrition, exercise, navigating peer interactions, and stress management. Youth with T2DM and their caregivers perceived many benefits of an SMA model and provided feedback to guide the development of a health education curriculum that could be integrated into an SMA clinic.

The Patient Activation Measure-13 (PAM-13) in an oncology patient population: psychometric properties and dimensionality evaluation

BackgroundAccurate assessment and enhancement of health-related skills among oncology patients are pivotal for optimizing cancer care. The Patient Activation Measure (PAM-13), a questionnaire designed to reflect an individual’s knowledge, skills, and confidence in self-healthcare management, has been validated across diverse countries and settings. Concerns have been raised regarding the cross-situational applicability, as patients with specific diseases and cultural backgrounds interpret questionnaire items differently. This study aimed to examine the structural validity and psychometric properties of the PAM-13 in an oncological patient cohort.MethodsBaseline data from a longitudinal non-randomized controlled study involving cancer out-patients (n = 1,125) from Comprehensive Cancer Centres in Southern Germany were analysed. The German version of the PAM-13 was employed. With classical test and item response theory methods data quality, reliability, convergent and structural validity, as well as psychometric properties were assessed. Exploratory (EFA) and confirmatory factor analyses (CFA) were employed to investigate the postulated unidimensionality of the underlying construct. With a partial credit model (PCM) we examined item fit, targeting, local independence and differential item functioning.ResultsParticipants were predominantly female (73.0%) with a breast cancer diagnosis (41.3%). While items were generally well-accepted, ceiling effects were observed and a high mean PAM-13 score (69.7, SD = 14.2) was noted, potentially compromising responsiveness to interventions. Reliability was adequate (Cronbach’s α = 0.81), person and item separation reliability were good to excellent (0.81 and 0.99, respectively). Explorations of the unidimensionality of the construct (EFA, CFA, PCM) yielded inconclusive results, hinting towards a two-factor solution. Item difficulty rankings deviated from the original. No differential item functioning was identified, and local independence was confirmed.ConclusionsWhile the PAM-13 serves as a valuable instrument for comprehending and promoting health-related skills in cancer patients, the identification of ceiling effects, disordered item-difficulty rankings, and inconclusive findings regarding unidimensionality contribute to the expanding body of evidence, emphasizing the dependency of PAM-13’s validity and reliability on distinctive characteristics within the population under investigation. Future research should prioritize refining or adding PAM-13 items to better capture the specific health-related challenges within diverse populations, paving the way for more effective patient engagement strategies in oncology.Trial registration numberDRKS00021779

The lived experience of hearing loss – an individualised responsibility

Objective This study aimed to provide a conceptual model to understand what typifies the lived experience of hearing loss. Design A grounded theory informed study of adults with hearing loss (n = 46) who participated in individual interviews. The data were analysed in line with the constant comparative approach of grounded theory. A substantial patient and public engagement (PPIE) strategy underpinned decisions and processes throughout. Study sample Adults were recruited from age bands (16–29; 30–49;50–79 and 80 upwards) to provide different lived experience. We recruited individuals from across the UK including urban, sub-urban and rural communities and included a typical constituency of each location including black and minority ethnic participants. Our PPIE groups included adults often marginalised in research including South Asian community groups, adults in residential care and those with additional disabilities. Results We identified the consistent features of the lived experience with hearing loss, as the individualised responsibility that hearing loss confers. These are an individual auditory lifeworld; social comparison and social support; individual and patient-centred care and individual agency and capability. Conclusions This work provides new insights for those practising audiology and highlights the importance of building social support systems through implementation of family and peer support approaches.

AUA24- pioneering shared decision-making and patient engagementstrategies.

AUA24- pioneering shared decision-making and patient engagementstrategies.

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

IntroductionPatient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group...

Growing a provincial patient and family engagement network to optimize kidney care.

Patient and family engagement is crucial for a responsive health system and improves patient outcomes. However, few practical resources for purposeful engagement are available to health leaders. Over the past fiveyears, BC Renal, the provincial kidney care network in British Columbia, developed, operationalized, and implemented a framework to enable meaningful patient and family engagement. An advisory committee, comprising patient partners and representatives from health authorities and the community, directs the outreach, resource development, and evaluation of patient and family engagement at BC Renal. Here, we describe how our network-wide patient engagement strategy was developed and expanded upon, and the progress so far. A 2022 survey reports that 95% were satisfied with the engagement opportunities, and narrative feedback suggests network members continue to adopt practical ways to collaborate more effectively. Health leaders, patient partners, and others continue to align operational and strategic activities to advance culture change in kidney care provincially.

The Impact of Patient Engagement on Healthcare: A Systematic Review of Unveiling the Benefits of Patient Engagement in Healthcare

Background: Recently, a body of evidence has emerged that patients who participate in the healthcare process have better health outcomes and lower treatment costs. Therefore, healthcare institutions have tended to use strategies for better patient engagement in the healthcare process, by educating them about their health conditions and fully involving the patient in making decisions about their healthcare. Objectives: This paper presents a systematic study of the recent literature on determining the outcomes and benefits of patient engagement in the healthcare process, through which we provide a comprehensive review, analysis, and synthesis of research published in the past five years. Methodology: We collected relevant literature published between 2018 and 2023 and reviewed the approved issues, research problems, manuscript scopes, research methodologies, and main findings. 28 studies yielded our final extracted cohort. Conclusions: Using the objective analysis of the extracted studies, we present a research typology that summarizes the major outcomes and the benefits of patient engagement in the healthcare process of relevant recent research in this field.

A Mixed Method Study: Exploring Occupational Therapy Practitioners’ Experiences and Perceptions of Virtual Care for Neurological Conditions

Objective: This study comprehensively investigates the experiences and perceptions of occupational therapy practitioners (OTPs) regarding virtual care for neurological conditions, with a particular focus on patient-centered practice and interprofessional collaboration. Methods: A mixed-methods survey involving 170 OTPs specializing in neurological conditions was conducted to gather data. Quantitative data were analyzed to calculate percentages and statistics, while qualitative data were subjected to thematic analysis to gain insights into the practitioners’ perspectives. Results: The study found that 72% of OTPs expressed comfort with performing virtual assessments, and 70% felt comfortable with virtual treatments. However, there were variations in comfort levels, particularly concerning assessments in the adult neurological population, with only 20% feeling comfortable in this context. Video conferencing was the most widely adopted virtual care platform (65%), followed by electronic health records (48%) and mobile apps (30%). The survey revealed that OTPs provided a range of services virtually, including psychosocial support (62%) therapeutic exercise and activities (78%), and patient/ caregiver education (60%). OTPs working with pediatric populations reported a higher perceived value in telehealth services (76%) compared to those working with adult populations (61%). Key facilitators to promote usage of telehealth with neurological conditions included telehealth-specific training programs, digital assessment tools, interprofessional collaboration, and patient engagement strategies. Barriers included training gaps, especially in adult neurological assessments. Conclusion: This study highlights the evolving role of occupational therapy in the realm of virtual care for neurological conditions. While the majority of practitioners recognize the importance of virtual care, tailored training and support programs are needed to address variations in comfort levels, particularly in assessments for adult neurological patients. Interprofessional collaboration is crucial for enhancing patient care. The study provides valuable insights for practitioners, educators, and healthcare institutions to optimize virtual care in the digital age.

Improving naturalistic neuroscience with patient engagement strategies.

The clinical implementation of chronic electrophysiology-driven adaptive deep brain stimulation (DBS) algorithms in movement disorders requires reliable representation of motor and non-motor symptoms in electrophysiological biomarkers, throughout normal life (naturalistic). To achieve this, there is the need for high-resolution and -quality chronic objective and subjective symptom monitoring in parallel to biomarker recordings. To realize these recordings, an active participation and engagement of the investigated patients is necessary. To date, there has been little research into patient engagement strategies for DBS patients or chronic electrophysiological recordings. We here present our concept and the first results of a patient engagement strategy for a chronic DBS study. After discussing the current state of literature, we present objectives, methodology and consequences of the patient engagement regarding study design, data acquisition, and study infrastructure. Nine patients with Parkinson's disease and their caregivers participated in the meeting, and their input led to changes to our study design. Especially, the patient input helped us designing study-set-up meetings and support structures. We believe that patient engagement increases compliance and study motivation through scientific empowerment of patients. While considering patient opinion on sensors or questionnaire questions may lead to more precise and reliable data acquisition, there was also a high demand for study support and engagement structures. Hence, we recommend the implementation of patient engagement in planning of chronic studies with complex designs, long recording durations or high demand for individual active study participation.

Adaptation to Telehealth of Personalized Group Visits for Late Stage Diabetic Kidney Disease.

The COVID-19 pandemic resulted in an unprecedented shift in the delivery of outpatient medical care, including the rapid transition of services from in-person to telehealth. We adapted an evidence-based personalized health planning group visit care model traditionally offered in-person to telehealth to support the care of patients with type 2 diabetes mellitus (T2D) and chronic kidney disease (CKD). Despite the need to leverage telehealth technologies to better support self-management for patients with CKD, scant evidence exists on how to do so. We conducted prospective adaptations of in-person evidence-based group visit model for telehealth delivery for patients with CKD and T2D. Intervention adaptations are reported using the Framework for Reporting Adaptations and Modifications (FRAME) taxonomy. The adapted virtual group visit care model was pilot tested among adults with T2D and stage 3b or 4 CKD. Feasibility outcomes included recruitment, attendance, satisfaction, and self-reported goal progress. Clinical outcomes were evaluated using Wilcoxon signed rank tests and included hemoglobin A1C (HbA1c), diastolic and systolic blood pressure, body mass index, and estimated glomerular filtration rate. Adaptation areas included outreach, visit format, educational materials design and access, staffing, and patient engagement strategies. 39% (43) of patients (110) contacted verbalized interest, and 58% (25) of those participated. 72% completed >6 group sessions. 68% of patients reported completing one or more health goals, with nutrition and physical activity being the most common. We observed a statistically significant improvement in HbA1c (p = 0.0176) six months post-program participation. Adapting evidence-based interventions for telehealth delivery is challenging due to the risk of altering an intervention's core components responsible for observed benefits. We adapted an in-person group visit model for the care of T2D and CKD for telehealth delivery. The telehealth approach was feasible and preliminary data suggested it improved relevant health and patient-recorded outcomes up to six months post-program completion. The approaches used here may be applicable to the adaptation of other clinical programs for telehealth delivery.

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations.

Inclusiveness, Support, Mutual Respectand Co-Build are the four pillars of patient engagement according to the Strategy for Patient-Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled 'Re-Purposing the Ordering of Routine laboratory Tests (RePORT)'. Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co-chairs of the PAC. Patient research partners were offered training, supportand tailored modalities of compensation to actively engage with the PAC. Regular member check-ins occurred through reflexivity and a formal evaluation of PAC member engagement. The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course-changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co-chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co-design approaches yielded rich research outputs. Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co-Build for meaningful patient engagement. Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co-development of a patient engagement strategy using a Human-Centered Design process.

Abstract 15763: Increasing Diversity Among Research Participants Through Patient Engagement in the Congenital Heart Initiative

Background: The Congenital Heart Initiative (CHI) is the first patient-powered digital registry for adults with congenital heart disease (ACHD). The CHI-Redefining Outcomes and Navigation to Adult-Centered Care (CHI-RON) study is built upon the CHI as a unique collaboration with PCORnet. Goal: Recruitment of populations that are racially diverse, younger, out-of-care, and male has been challenging in ACHD studies. Our goal was to design patient engagement and recruitment strategies to increase these underrepresented populations. Methods: Launched in December 2020, patients across the globe can self-enroll in the CHI registry. The CHI-RON study, initiated in May 2022, recruits ACHD patients at 12 PCORnet centers. Patients are involved in all aspects of the study including recruitment (see Figure 1). Results: As of May 2023, a total of 2,520 participants were recruited by CHI-RON centers while 1,494 self-enrolled in the CHI. Most participants report complex CHD anatomy (n=1,660, 49%). A total of 762 (36%) participants are considered out of care. CHI-RON recruitment methodologies increased representation when compared to self-enrolled CHI participants in terms of ethnicity (10.3 % vs 7.4% Hispanic, p=0.005), race (5.4% vs 2.6%, African American, p&lt;0.001), sex (41% vs 28% male, p&lt;0.001), age (34.8 +/-12.5 years vs 44.5 +/- 14.3 years, p&lt;0.001), and education (33% vs 22% high school equivalent or less, p&lt;0.001). Most patients involved in the study team (n=11, 83%) reported a very to extremely high degree of meaningfulness (average score 85.2) per the Patient Engagement in Research Scale (PEIRS-22). The mean scores of each of the seven subdomains demonstrated significant meaningfulness, especially in the subdomains of convenience, contributions, and benefits. Conclusions: Patient engagement is critical to improving the inclusion of underrepresented populations in clinical research and ensuring alignment with the needs of ACHD patients.

Improving patient activation with a tailored nursing discharge teaching intervention for multimorbid inpatients: A quasi-experimental study

ObjectivePreliminary effectiveness test of a novel structured personalized discharge teaching intervention for multimorbid inpatients. MethodsUsing a 2-group sequential pre/post-intervention design, the sample comprised 68 pre-intervention control group and 70 post- intervention group participants. The discharge teaching intervention by trained clinical nurses used structured tools to engage patients and individualize discharge teaching. Outcomes measures included Patient Activation Measure, Readiness for Hospital Discharge Scale, Discharge Care Experiences Survey, and readmission with 10 days post-discharge. ResultsThe intervention had a statistically significant positive effect on improving patient activation (M=4.8; p = 0.05) from admission to post-discharge. The participation subscale of the Discharge Care Experiences Survey was higher in the intervention (M=4.1, SD=0.7) than the control group (M=3.8, SD=0.7; t (127)= −2.79, p = .01, effect size= .34). There were no significant between-group differences in Readiness for Hospital Discharge Scale and readmission. ConclusionsOur results suggest that a structured personalized discharge teaching intervention can improve patient activation and participation in discharge care. Further refinement of the intervention is needed to evaluate and improve specific components of the intervention. Practice ImplicationsStructured personalized discharge teaching should include patient engagement strategies in the teaching-learning process.

Co-creation of a patient engagement strategy in cancer research funding

BackgroundAs research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities.MethodsA team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation.ResultsThe co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience.ConclusionsLessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding.

Implementation of a hybrid healthcare model in rheumatic musculoskeletal diseases: 6-months results of the multicenter Digireuma study

ObjectivesRheumatic and musculoskeletal diseases (RMDs) require a tailored follow-up that can be enhanced by the implementation of innovative tools. The Digireuma study aimed to test the feasibility of a hybrid follow-up utilizing an electronic patient reported outcomes (ePROs)-based monitoring strategy in patients with RMDs.MethodsAdult patients with rheumatoid arthritis (RA) and spondyloarthritis (SpA) were recruited for a 6-month bicentric prospective follow-up consisting of face-to-face and digital assessments. Patients were asked to report disease-specific ePROs on a pre-established basis, and could also report flares, medication changes, and recent infections at any time. Four rheumatologists monitored these outcomes and contacted patients for interventions when deemed necessary. Results from face-to-face and digital assessments were described.ResultsOf 56 recruited patients, 47 (84%) submitted any ePROs to the digital platform. Most patients with RA were female (74%, median age of 47 years), while 48% of patients with SpA were female (median age 40.4 years). A total of 3,800 platform visits were completed, with a median of 57 and 29 visits in patients with RA and SpA, respectively. Among 52 reported alerts, 47 (90%) needed contact, of which 36 (77%) were managed remotely. Adherence rates declined throughout the study, with around half of patients dropping out during the 6 months follow-up.ConclusionThe implementation of a hybrid follow-up in clinical practice is feasible. Digital health solutions can provide granular knowledge of disease evolution and enable more informed clinical decision making, leading to improved patient outcomes. Further research is needed to identify target patient populations and engagement strategies.