Patient Engagement In Research Research Articles

Patient research partner engagement in OMERACT: Enhancing engagement through the implementation of patient engagement in research tools

ObjectivesThis paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement. MethodsBefore the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session. ResultsThe plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes. ConclusionsThis paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study

Objective: There are compelling ethical and practical reasons for patient engagement in research (PEIR), however, evidence for best practices remains limited. We investigated PEIR as implemented in CAPTURE ALS, a longitudinal observational study, from study inception through the first 2.5 years of operations. Methods: Data were drawn from three engagement initiatives: a community-led letter-writing campaign; consultation with patient and caregiver focus groups; and a study-embedded ‘participant partner advisory council’ (PPAC). Data were derived retrospectively from study documentation. We used the International Association of Public Participation (IAP2) participation spectrum as a framework for investigation. Results: 2401 letters from community members to the Canadian government affirmed study objectives and advocated for funding. Feedback from focus group consultation influenced study design and supported the study’s data-sharing plan. PPAC collaboration shaped all aspects of the study. Contributions included: co-creation of governance documents, input on study protocols and public-facing communication, and development of engagement webinars for study participants and feedback surveys. Effective communication practices fostered collaboration and helped avoid tokenistic engagement. CAPTURE ALS encompassed all IAP2 participation levels. Conclusions: CAPTURE ALS was shaped by meaningful engagement initiatives over the course of the study. Lessons learned included: begin early and embed PEIR within research; build relationships and foster mutual learning; be flexible, open to adaptation, and seek diversity. Primary challenges included funding for early implementation, time needed to maintain relationships, and attrition due to disease progression. All IAP2 participation levels contributed to meaningful PEIR. ‘Empowerment’ was demonstrated through advocacy.

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

BackgroundPatient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature.MethodsThe study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (n = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5–3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop.ResultsOur participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all.ConclusionsFuture directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

Family‐centred care interventions for children with chronic conditions: A scoping review

AbstractIntroductionChildren with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family‐centred care need information about the characteristics of existing interventions, their development and the domains of family‐centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family‐centred interventions designed to improve experiences with care for children with chronic conditions.MethodsWe searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7–20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family‐centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full‐text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family‐centred care.ResultsOur search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed‐methods studies (n = 9 each). The most frequently addressed domains of family‐centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30).ConclusionThis review, which identified 61 unique interventions aimed at improving family‐centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high‐needs population.Patient or Public ContributionThis study was co‐developed with three patient partner co‐investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co‐investigators contributed to this study at all stages, from conceptualization to dissemination.

What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines

AbstractBackgroundAn integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation.MethodsWe conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations.ResultsWe identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12–$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples.ConclusionMultiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised.Patient or Public ContributionsThe patient partner coauthor informed protocol development, identified data items, and interpreted findings.

The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

This paper examines the use of digital social platforms to enhance the engagement of adolescent and young adult (AYA) cancer patients in research. Among AYAs, digital social networks have emerged as valuable resources for connection, information exchange, and emotional support. Patient engagement, encompassing participation and empowerment, is a critical aspect of AYA oncological research, yet there is a lack of scholarship dissecting the manifestation of these concepts in relation to digital social platforms. This study aims to bridge this gap by employing the frameworks of participatory culture and data ethics to analyze the impact of digital social platforms on patient engagement in research. Semi-structured qualitative interviews were conducted with eight experts from AYA patient organizations to gather insights on this topic. The findings reveal the potential of digital social platforms in fostering peer support, improving patient awareness and collaboration, increasing research enrollment, and diversifying data collection with user-generated content. However, challenges related to communication, privacy, and ethical considerations such as diversity and inclusion were also identified. The study contributes to the understanding of patient engagement among AYA cancer patients in the digital age and the development of effective strategies to encourage and highlight the voices of this patient population.

Psychosocial and auditory factors that influence successful music-based auditory training in pediatric cochlear implant recipients.

Cochlear implants (CIs), which are designed to support spoken communication of persons with severe to profound hearing loss, can provide improved hearing capability through passive exposure. However, auditory training may optimize perception of spectrally complex sounds such as music or speech. Reviews of music-based training for pediatric CI users have reported modest though variable benefits, as well as problems with attrition. It is presumed that more substantial changes may result from longer, more intensive training; however, the development of protocols sufficiently motivating for sustained intensity is challenging. This article examined the experiences of star pediatric CI users, whose years of music training have yielded exceptional auditory benefits. Greater understanding of their experiences and attitudes may suggest best practices for music-based training. Research aims included: (a) characterizing the musical behaviors and perceptual learning processes of music-centric (Music-centric, for purposes of this paper, refers to CI users who engage in sustained and successful music making such as music lessons and ensembles and focused music listening over a period of years, and who derive deep satisfaction from those experiences.) pediatric CI users, and (b) identifying psychosocial and auditory factors that motivated persistence in auditory training. We used qualitative and patient-engaged research methodologies, gathering data through questionnaires with open-ended questions. The participants, six music-centric CI users and five parents, described their experiences and attitudes regarding music training, and factors that supported or undermined those experiences. Data were analyzed using reflexive thematic analysis. The codes were consolidated into five themes and organized into a Model of Music-Based Learning for Pediatric Cochlear Implant Recipients. Sustained participation in music training was perceived as a dynamic process including varied musical stimuli, and moderated by intrinsic (attitude, perceived behavioral control) and extrinsic (parents, teachers, peers) influences, hearing status, sound access and background factors. These themes highlighted motivational factors that pediatric CI users and parents considered important to sustained, intensive and successful music learning throughout childhood and adolescence. These factors should be considered in the development of music-based training for pediatric CI recipients.

Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences

BackgroundPatient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives: (1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; (2) assessing the applicability of the Danish PEIRS-22; and (3) focus group interviews to explore the user experiences of PPI.MethodsA three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct patient cancer advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were conducted in phase three, involving individuals from three patient cancer advisory boards.ResultsThe translation process resulted in a Danish version of PEIRS-22, conceptually and culturally equivalent to the English version. Overall, among individuals of the three advisory boards (n = 15) the applicability was found to be satisfactory, with no missing data and all items completed. The total PEIRS-22 score among the three advisory boards was 85.2 out of a possible 100, with higher scores indicating greater meaningful involvement. A nested sample of the three patient cancer advisory boards (n = 9) participated in focus group interviews. The analysis yielded four themes: (1) The Danish PEIRS-22 captured the intended cultural meaning and contributed to self-reflection, (2) Internal motivation is a driver for involvement (3), Involvement brought a personal sense of empowerment and (4) Meaningful involvement collaborations are fostered by a trustful atmosphere.ConclusionsThe PEIRS-22 questionnaire has been translated, linguistically validated, and culturally adapted into Danish. We propose that the PEIRS-22 is now ready for use in Danish populations. This study provides a Danish version of the questionnaire that can be used to develop patient-centred practices and foster meaningful involvement and collaborations between patients and researchers in the field of cancer research in Denmark. Personal benefits of participating in PPI can vary, and we recommend using PEIRS-22 in conjunction with a qualitative approach to better explore perspectives on meaningful involvement.Trial registrationThe study was registered prospectively on October 22, 2022, by the Danish Data Protection Agency (jr. nr. P-2022–528).

A Mixed Methods Study to Describe the Relationship between Burden of Illness, Social Needs, and Identity Experiences Among Patients with Multiple Myeloma

Background Multiple Myeloma (MM) is a heterogenous hematologic malignancy where five-year survival has dramatically improved due to recent treatment advances. However, disparities exist for patient subgroups. Full assessment of social needs and identity experiences on MM disease burden is needed. The objective is to describe the relationship between burden of illness, social needs, and identity experiences within a diverse MM patient population. Methods A mixed methods design with a sequential approach was used to evaluate MM patients recruited through the Patient Engagement Research Council, a program that involves a diverse, nationally representative group of disease-aware patients living with chronic health conditions who provide insights and feedback around related care processes. The Accountable Health Communities survey was adapted and distributed to study participants to describe their sociodemographic characteristics and social needs. Patient profile characteristics were the basis for subsequent semi-structured focus group sessions. Transcripts and observation notes were analyzed using narrative thematic analysis to identify themes related to how social and identity experiences influenced MM disease burden. Results Of 25 participants with MM,21 completed the survey (age ≥65 years: 24%; female: 57%; race other than White: 52%). Patients reported the need to better understand medical information (n=7) and concerns about financial instability, including lack of full-time employment (n = 7). Diverse living situations were reported; almost half of participants had children living in the same household (n=10) and concern for housing instability was reported by 2 individuals. Nine participants had concerns about food insecurity and eight reported challenges related to transportation. When asked about mental health burdens, almost all (n=18) reported experiencing stress due to their health and 8 participants expressed loneliness and/or isolation ( Table 1). Twenty patients (age ≥60 years: 40%; female: 60%; race other than White: 60%) participated in 4 qualitative focus group sessions. Patients reported mental and physical health burdens related to living with MM. Ongoing anxiety, need for frequent monitoring to detect for progression, and lack of cure were among the most reported contributors to mental health burden. Significant fatigue and variation in side effects due to treatment changes were among the most reported contributors to physical health burden. Burden related to risk of progression, treatment side effects, financial issues, toll on physical/emotional health, and appointment frequency were reported as unique to MM compared to other chronic diseases (e.g., heart disease or diabetes). Most patients (n=13) reported ≥1 social experience which negatively impacted their health outcomes. Lack of health information on disease or treatment options due to myeloma disease complexity (n=10) and financial instability (n=5), including job instability and inability to change jobs, were the most reported barriers, followed by lack of insurance coverage (n=3), long appointment travel time (n=3), and lack of social support (n=3) such as lack of awareness of MM by others. Patients reported negative outcomes related to identity (n=9), including race/ethnicity (n=4), age (n=4), and culture (n=4). Patients perceived delayed or incorrect diagnosis due to cultural or age-related stereotypes. One patient reported receiving less attention than expected from her medical oncologist due to younger age. Another patient reported lack of family support to seek initial care because of her cultural background. Patients provided few examples where identity and social experiences interacted, ultimately affecting their disease. The interaction among age, disability status and financial instability was the most notable contributor leading to patients withdrawing from the workforce. Conclusions This study describes unique challenges perceived by patients with MM related to social and identity experiences which exacerbate disease burden and negatively impact treatment outcomes. How social and identity constructs intersect to impact patient experiences requires further investigation and quantification. Further insight will aid development of tailored implementation strategies to improve health inequities throughout the MM disease journey.

Applying Lessons From Rheumatology to Better Understand Long COVID.

Long COVID can sometimes be attributed to organ damage and well-characterized pathophysiology, but more often there is no evidence of organ damage or abnormal biomarkers. This is most evident in patients with mild to moderate initial SARS-CoV-2 infection who were not hospitalized. Their persistent symptoms are strikingly similar to those of fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome, including fatigue, post-exertional malaise, myalgias/arthralgias, and sleep and cognitive disturbances in 50% to 100% of cases. Analogous pathophysiologic pathways in fibromyalgia (FM), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and long COVID include host-microbial interactions in the absence of direct tissue invasion and absence of systemic autoimmunity, withevidence for immune dysregulation as well as autonomic, peripheral, and central nervous system dysfunction. Current treatment of long COVID has been based on multidisciplinary management recommended for FM and ME/CFS and has been formalized and made widely available by funding for nationwide long COVID clinics. Long COVID and its treatment should be distinguished by the presence or absence of organ damage. The acknowledged role of patient engagement in research and open dialogue regarding work and disability noted in long COVID may have meaningful impact on patients with FM and ME/CFS. Hopefully, advances in basic long COVID research will aid in understanding FM and ME/CFS, and rheumatologists should thus be involved in such research and patient care.

Exploring meanings of expert and expertise in patient engagement activities: A qualitative analysis of a pan-Canadian survey

In this paper, we engage with claims of expert identities within the field of patient engagement. We do so through analysis of a subset of data collected as part of a 2020 pan-Canadian survey of patient partners. Our analysis is based on 446 qualitative responses to one target question: “Do you think the lived experience you bring to your patient partner role makes you an expert? Please explain in the box below”. Most respondents answered “yes” (n = 253 comments), a sizeable minority answered “no” (n = 161 comments) or declined to answer the target question while still providing comments (n = 32 comments). Through a discursive analysis of the comments, we explore the meanings ascribed to concepts of expert, expertise, and experience. Ultimately, we find nuanced and sometimes contradictory understandings. Thus, dilemmas of expertise in the patient engagement field may not be entirely about claims to specialized knowledge. Instead, discourses seem to be mobilized in response to the thorny, political question: “who is authorized to speak on behalf of patients”? To meaningfully advance the conversation within patient engagement research and practice, we argue for more sociological and political understandings of forms of expertise, objects of expertise, and deployments of expert status in different kinds of knowledge spaces.

How can pharmacists better support patients with chronic diseases? The patient perspective

BackgroundPatients’ perceptions of their interaction with pharmacists can affect how they use this resource for chronic disease care. ObjectiveThis qualitative study explored pharmacist–patient interactions and patients’ perceptions of pharmacists’ roles in cardiovascular disease (CVD) and inflammatory bowel disease (IBD). MethodsPatient volunteers, recruited through Janssen’s Patient Engagement Research Council program, completed a 15-minute prework survey before a 90-minute live virtual focus group session to provide feedback on pharmacist–patient interactions, the pharmacist’s role in patient care, and recommendations for improvement. ResultsIn total, 27 patients participated. Among patients with CVD (n=18), 56% were female, 61% aged ≥65 years, and 39%/39% Black/White. Of those with IBD (n=9), 56% were female, 89% aged 25–44 years, and 33%/56% Black/White. In the CVD cohort, patients conversed with their pharmacists at least monthly, on average. Patients were generally happy with their relationship with their pharmacist, viewing pharmacists as a trusted resource for medication information. Polypharmacy was common in the CVD cohort (mean, 10.8 medications). For patients with IBD, pharmacist–patient interactions were less frequent, relationships were generally perceived as transactional, patients took fewer medications (mean, 3.2), and felt uncomfortable discussing their disease in public. All patients (CVD and IBD) were unaware of pharmacists’ medical training/knowledge. Recommendations included private spaces for sensitive conversations, phone/text support, in-depth regular check-ins, and proactive communication to highlight that the pharmacist’s role is to provide patient-centered holistic care. ConclusionThis research demonstrates a lack of understanding of pharmacist training, accessibility and role among patients with chronic disease, and highlights opportunities to amend delivery of care. These insights can be used to inform strategies and approaches tailored to address unique needs of specific patient populations to enhance pharmacist–patient interactions.

Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network

BackgroundThe CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network.MethodsIn this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners.ResultsA total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM’s support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents’ experiences in partnering with them and how to improve engagement.ConclusionsWe highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners.

Patient perceptions of copay card utilization and policies

ABSTRACT Background: Copay cards are intended to mitigate patient out-of-pocket (OOP) expenses. This qualitative, exploratory focus group study aimed to capture patient perceptions of copay cards and copay adjustment programs (CAPs; insurers’ accumulator and maximizer policies), which redirect the copay card utilization benefits intended for patients’ OOP expenses. Methods: Patients with chronic conditions were recruited through Janssen’s Patient Engagement Research Council program. They completed a survey and attended a live virtual session to provide feedback on copay cards. Results: Among 33 participants (median age, 49 years [range, 24–78]), the most frequent conditions were cardiovascular-metabolic disease and inflammatory bowel disease. Patients associated copay cards with lessening financial burden, improving general and mental health, and enabling medication adherence. An impact on medication adherence was identified by 10 (63%) White and nine (100%) Black respondents. Some patients were unaware of CAPs despite having encountered them; they recommended greater copay card education and transparency about CAPs. Conclusion: Patients relied on copay cards to help afford their prescribed medication OOP expenses and maintain medication adherence. Use of CAPs may increase patient OOP expenses. Patients would benefit from awareness programs and industry – healthcare provider partnerships that facilitate and ensure access to copay cards.

Designing infographics in health research with patients and the public: A scoping review protocol.

Information graphics or infographics combine visual representations of information or data with text. They have been used in health research to disseminate research findings, translate knowledge and address challenges in health communication to lay audiences. There is emerging evidence of the design of infographics with the involvement of patients and the public in health research. Approaches to involvement include public and patient involvement, patient engagement and participatory research approaches. To date, there has been no comprehensive review of the literature on the design of infographics with patients and the public in health research. This paper presents a protocol and methodological framework for a scoping review to identify and map the available evidence for the involvement of patients and the public in infographics design in health research. It has been informed by preliminary searches and discussions and will guide the conduct and reporting of this review.

“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.

A community engagement training program for basic and translational cancer researchers.

There is an increasing awareness of the importance of patient engagement in cancer research, but many basic and translational researchers have never been trained to do so. To address this unmet need, a 1-year patient engagement training program for researchers was developed. Eleven researchers and eleven paired research advocates participated. This program, designed for virtual delivery, included 3 didactic modules focused on (1) Community Outreach and Engagement principles and methods, (2) Communication skills, and (3) Team Science. This was followed by longitudinal projects to be completed by the researcher/advocate pairs, including learning about the research project, and co-authoring abstracts, manuscripts and grant proposals. Monthly group meetings allowed pairs to share their experiences. The program culminated in the pairs creating and presenting oral abstracts for the University of KansasCancer Center's Annual ResearchSymposium. All participants indicated that the modules had a positive impact on their ability to collaborate in research. Both researcher self-evaluations and patient advocate evaluations of their researcher partner showed an improvement in researcher communication competency. Results from the Patient Engagement in Research Scale showed that advocates were highly engaged. Within 1year after program completion, participating pairs have completed four abstracts and 9 grant proposals. The program will be modified based on participant feedback, and can be adapted for future cohorts if an increased number of sessions per month and shortened program duration are desired. The program's virtual format allows scalability across institutions to potentially benefit large cohorts of researchers.

Engaging diverse patients in a diverse world: the development and preliminary evaluation of educational modules to support diversity in patient engagement research

BackgroundCurrent practices for engaging patients in patient-oriented research (POR) result in a narrow pool of patient perspectives being reflected in POR. This project aims to address gaps in methodological knowledge to foster diversity in POR, through the co-design and evaluation of a series of educational modules for health researchers in British Columbia, Canada.MethodsModules were co-created by a team of academic researchers and patient partners from hardly-reached communities. The modules are presented using the Tapestry Tool, an interactive, online educational platform. Our evaluation framework focused on engagement, content quality, and predicted behavior change. The User Engagement Scale short form (UES-SF) measured participants’ level of engagement with the modules. Survey evaluation items assessed the content within the modules and participants' perceptions of how the modules will impact their behavior. Evaluation items modeled on the theory of planned behavior, administered before and after viewing the modules, assessed the impact of the modules on participants’ perceptions of diversity in POR.ResultsSeventy-four health researchers evaluated the modules. Researchers’ engagement and ratings of module content were high. Subjective behavioral control over fostering diversity in POR increased significantly after viewing the modules.ConclusionsOur results suggest the modules may be an engaging way to provide health researchers with tools and knowledge to increase diversity in health research. Future studies are needed to investigate best practices for engaging with communities not represented in this pilot project, such as children and youth, Indigenous Peoples, and Black communities. While educational interventions represent one route to increasing diversity in POR, individual efforts must occur in tandem with high-level changes that address systemic barriers to engagement.

Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: a qualitative, patient-led, Canadian study

ObjectiveTo gain an insight into coping strategies that people living with chronic pain use to self-manage their pain.DesignThis qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach....