Patient Advisory Research Articles

“Unidos Hablemos” – description of a virtual conference series to engage the Hispanic and Latino community in asthma and COVID-19 education and research

BackgroundInequity in asthma and COVID-19 outcomes and research among Hispanic or Latino individuals is well established. Patient centered outcomes research (PCOR) may help address these inequalities. This report describes the development, implementation, and evaluation of a virtual conference series program titled “Unidos Hablemos de/United, Let’s Talk About” intended to address the health literacy of the Hispanic/Latino community regarding asthma and COVID-19 and to encourage involvement in PCOR.MethodsA Project Advisory Group consisting of Hispanic/Latino patient advisors who had been diagnosed with asthma and/or COVID-19, healthcare providers, researchers, a Hispanic faith-based leader, and a program evaluator designed and implemented a six-month series of monthly one-hour virtual sessions. Speakers and topics were selected that fit the Hispanic/Latino community and culture regarding asthma, COVID-19, and PCOR. Recruitment was through a multichannel digital promotion strategy, including social media. The virtual sessions were free on the ZOOM webinar platform and included interactive polling questions, live chat box, and Q&A. All audio and written materials from the sessions were translated into Spanish and English. Evaluations were used to rate the overall satisfaction with the program.ResultsAn average of 382 participants attended each of the six sessions, and participation generally increased with each session. The proportion of participants who considered themselves a Hispanic/Latino patient with asthma, caregiver, or clergy who served Hispanic/Latino communities increased by 100% from session one to session two. Preference for materials in Spanish ranged from 12 to 20% of participants over the six sessions. Among the sessions, 74–84% of polling question respondents indicated they would be willing to participate in research or a study, and 88% said they would be willing to serve as a patient partner/advocate. Program evaluations consistently indicated high satisfaction with the session content, session format, and feeling of inclusion.ConclusionsUnidos Hablemos provided a voice to the Hispanic/Latino community that will inform future strategies to improve equity in asthma management, COVID-19, and PCOR. Patient speakers generated trust from the participants and “bridged the gap” between physicians, researchers, and the Hispanic/Latino community. Providing evidence-based, current information will empower patients and caregivers to make informed healthcare decisions.

Am I attached? A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada

BackgroundHaving a primary care provider is associated with better care experiences and lower care costs. In 2021, INSPIRE-PHC released Primary Care Data Reports - publicly available summaries of administrative billing data about how populations in each of Ontario’s 60 health teams use primary care services. Given the characterization of Canadian primary care systems as ‘in crisis’, publicly available data about primary care at the regional level presented a significant opportunity for knowledge mobilization. An understandable resource could ground the public conversation about primary care access in data. Recognizing the role that lived experience plays in ensuring the public understands research findings, a partnership between patient advisors, Ontario Health Team representatives, researchers, and trainees was established to co-produce public-facing infographics based on primary care data.MethodsEvidence-based guidelines for public health infographic creation and elements of transformative action research guided a six-meeting process to engage up to 14 patient advisors, three Ontario Health Team staff and two primary care trainees. Patient advisors were affiliated with a provincial patient-oriented primary health care research group or a Hamilton-based Ontario Health Team. Ninety-minute meetings were conducted virtually, and notes were shared with attendees to ensure they accurately reflected the conversation. Two consultations with Ontario Health Team-affiliated primary care providers provided direction and ensured project outputs aligned with local priorities.ResultsProject partners shared feedback on draft infographics, audience identification, priority elements from Primary Care Data Reports to include in the infographics, and aesthetic features (e.g., headings, colour scheme, charts). Project partners felt the most important metrics to convey to the public were those that simultaneously reinforced the benefits of primary care on individual health outcomes and health system costs.ConclusionsPatient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Our approach to engaging patients prevented both oversimplification and unnecessary complexity in a public-facing visual about attachment to primary care.

Canadian Association of Radiologists Spine Imaging Referral Guideline.

The Canadian Association of Radiologists (CAR) Spine Expert Panel is made up of physicians from the disciplines of radiology, emergency medicine, neurology, neurosurgery, physiatry, a patient advisor, and an epidemiologist/guideline methodologist. After developing a list of 10 clinical/diagnostic scenarios, a rapid scoping review was undertaken to identify systematically produced referral guidelines that provide recommendations for one or more of these clinical/diagnostic scenarios. Recommendations from 23 guidelines and contextualization criteria in the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) for guidelines framework were used to develop 22 recommendation statements across the 8 scenarios (one scenario points to the CAR Trauma Referral Guideline and one scenario points to the CAR Musculoskeletal Guideline). This guideline presents the methods of development and the referral recommendations for myelopathy, suspected spinal infection, possible atlanto-axial instability (non-traumatic), axial pain (non-traumatic), radicular pain (non-traumatic), cauda equina syndrome, suspected spinal tumour, and suspected compression fracture. Spondyloarthropathies and spine trauma point to other CAR Diagnostic Imaging Referral Guidelines, Musculoskeletal and Trauma, respectively.

Deriving a Preference-Weighted Measure for People With Hypoglycemia From the Hypo-RESOLVE-Quality of Life

ObjectivesHypoglycemia affects the health-related quality of life (HRQoL) of people living with diabetes (PwD), and existing preference-weighted measures do not capture all important aspects. The study aimed to generate a preference-weighted measure capturing the HRQoL impact of hypoglycemia in PwD. MethodsItems for the health-state classification system were selected from the hypoglycemia-specific Hypo-RESOLVE QoL measure using relevance in cognitive interviews, translatability, suitability for valuation, endorsement by patient advisors and experts, and psychometric performance in a large survey of PwD. Second, an online valuation survey using discrete choice experiment (DCE) with survival attribute was conducted with members of the UK public. DCE data were modeled using conditional logit analysis and results scaled to produce preference weights for the classification system on a scale in which 1 is equivalent to full health, 0 is equivalent to dead, and below 0 is worse than dead. ResultsThe health-state classification system consists of 8 items reflecting the factors of the Hypo-RESOLVE QoL (psychological, social, and physical aspects). The valuation survey was completed by 1000 members of the UK public, representative for age and sex. Good understanding of DCE tasks was demonstrated. The item “do what I want to do in my life” had the largest preference weight, and “find it hard to stop thinking about my glucose levels” had the smallest. ConclusionsThis study generated Hypo-RESOLVE QoL-8D, a preference-weighted measure capturing the HRQoL impact of hypoglycemia in PwD, with UK general public preference weights. The measure can be generated from Hypo-RESOLVE QoL data.

Improving goal-concordant care via a uniquely collaborative and multi-site PFAC model.

265 Background: Studies reveal a mismatch between the goals of care (GOC) of cancer patients and actual care received. The 10 members of the Alliance of Dedicated Cancer Centers (ADCC) convened the Improving Goal Concordant Care (IGCC) initiative to address system gaps. IGCC was led by palliative care and oncology experts, with guidance from patient and family advisors. Uniquely, the advisors were identified from patient family advisory councils (PFAC) at each center, forming a collaborative Advisory Group (AG) with the lived experience of each center and the knowledge of advocating for the patient/family voice locally. Methods: PFAC members were recruited from each site to serve on the AG. The 19 member AG met quarterly, with minutes shared with the IGCC oversight group, the Implementation Workgroup (IWG). In September 2023, all AG members were surveyed about perceptions of PFAC engagement and local impact of IGCC. In May 2024, 20 IWG members were surveyed about implementation successes and barriers, including items related to PFAC engagement. Results: AG evaluation and recommendations altered IGCC planned core implementation and evaluation actions meaningfully; for example in 1) selection of structured fields in electronic health record (EHR) and universally accessible GOC documentation and in 2) centering patients in the GOC measure set, including incorporating “Heard & Understood” survey into IGCC evaluation. Other AG guidance around direct patient engagement readiness for GOC conversations and implementing patient GOC surveys was left to individual sites to consider with variable adoption. AG Survey: 63% response rate. 80% noted that the GOC program was discussed with their local PFAC and 92% experienced changed routine patient care after GOC implementation. IWG Survey: 100% response rate. 68% agreed that their center sought guidance from their PFAC during GOC implementation and that leadership presented to their PFAC about their GOC implementation. 26% indicated reporting data to their PFAC; of those that did, 80% agreed that this positively impacted their GOC implementation. Conclusions: While PFACs are occasionally included in quality interventions, this model centered the patient/family voice by supporting a PFAC stakeholder feedback loop working collaboratively and locally to support implementation and evaluation of IGCC objectives. While not all AG recommendations were formally integrated into IGCC, all were considered and many adopted at individual centers. Despite ongoing IGCC-level involvement, center-specific engagement of PFACs varied. Future efforts can track this during process evaluation as local PFAC engagement was highly valued. Consensus building for national best practice implementation and evaluation by recruiting local experts including PFAC members into national collaborative efforts is a successful model for local change.

Creating and implementing a medical consultation recording app: Improving health information recall and shared decision-making with My Care Conversations.

Research indicates that recording medical consultations benefits patients by helping them recall information pertinent to their care. Cancer Care Alberta set out to develop a mobile recording app to enable patients to safely and securely record appointments and take notes. Stakeholder engagement was conducted with patients, healthcare providers, and the Alberta Health Services Legal & Privacy team. App testing was completed with patient and family advisors. The app was piloted in a clinic to assess workflow impacts before moving to a public launch. The app launched in late November 2018 and continues to be used by patients in the cancer program and beyond. Earlier in 2024, the app underwent additional testing with advisors and user-friendly improvements were made based on feedback and previous user reviews. This article summarizes the development, implementation, and sustainment of the My Care Conversations app. Implementation challenges and effective strategies are highlighted.

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

BackgroundPatient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and...

Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework.

As the pharmaceutical industry advances towards more patient-focused product development, it is well recognized that meaningful patient engagement is required for the authentic patient voice to inform research and regulatory decisions. However, for this to happen systematically and consistently across the industry, there is still a need to evaluate and communicate the value of patient engagement to all stakeholders. Evaluating engagement also informs process improvement, elevating the value further. We describe the development of a conceptual, yet practical, framework for measuring the impact of engagement to achieve this. The framework depicts how metrics can be used to capture and assess the inputs, outputs, and value of patient engagement across the medicines lifecycle. Although conceived in the context of systems and processes within one company, Novartis, the framework was co-created with patient advisors and designed to be both patient-relevant and adaptable for any pharmaceutical organization. The adoption and evolution of the framework will help to demonstrate the value-to patients, healthcare systems, and businesses-of integrating patient engagement into core activities across the medicines lifecycle. We encourage the pharmaceutical industry to apply impact measurement to build a robust evidence base, through measuring, publishing, and communicating the value of patient engagement.

Hospital Diversity, Equity, and Inclusion Efforts: Perspectives of Patient and Family Advisors.

Patient and family advisory councils are common within children's hospitals. However, lack of diversity among patient and family advisors (PFAs) may result in exclusion of crucial perspectives and perpetuate inequities. We sought to understand PFA perspectives on how children's hospitals should approach: (1) recruitment and support of PFAs from groups at greater risk of health inequities; and (2) development of meaningful partnerships with PFAs or patient and family advisory councils on institutional diversity, equity, and inclusion (DEI) efforts. We conducted a qualitative study of PFAs of children's hospitals from communities at greater risk for health inequities based on self-identified race, ethnicity, gender, socioeconomic status, disability, language, or other factors. Focus groups were virtual and group discussions were recorded, transcribed, and analyzed using inductive qualitative analysis. In total, 17 PFAs participated across 5 focus groups (4 in English, 1 in Spanish). We identified 6 themes: (1) PFA diversity is necessary to understand existing health inequities; (2) diversity needs to be considered broadly; (3) recruiting for diverse PFAs requires intentionality, visibility of PFACs within and outside of the hospital, and deliberate connections with families and communities; (4) efforts to increase PFAC diversity must be accompanied by work to develop inclusive environments; (5) diversity efforts require meaningful engagement and equity; and (6) diverse PFACs can enrich DEI efforts but require organizational commitment and follow-through. Insights from our qualitative study of PFAs can be used by healthcare systems to foster diversity and inclusion in PFACs and advance hospital DEI efforts.

Canadian Association of Radiologists Genitourinary Imaging Referral Guideline.

The Canadian Association of Radiologists (CAR) Genitourinary Expert Panel is made up of physicians from the disciplines of radiology, emergency medicine, family medicine, nephrology, and urology, a patient advisor, and an epidemiologist/guideline methodologist. After developing a list of 22 clinical/diagnostic scenarios, a rapid scoping review was undertaken to identify systematically produced referral guidelines that provide recommendations for one or more of these clinical/diagnostic scenarios. Recommendations from 30 guidelines and contextualization criteria in the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) for guidelines framework were used to develop 65 recommendation statements across the 22 scenarios (2 scenarios point to the CAR Obstetrics and Gynecology Diagnostic Imaging Referral Guideline). This guideline presents the methods of development and the referral recommendations for haematuria, hypertension, renal disease (or failure), renal colic, renal calculi in the absence of acute colic, renal lesion, urinary tract obstruction, urinary tract infection, scrotal mass, or pain, including testicular torsion, adrenal mass, incontinence, urgency, and frequency, chronic pelvic pain, elevated PSA, infertility, and pelvic floor.

Patient and caregiver perspectives on causes and prevention of ambulatory adverse events: multilingual qualitative study

ContextAmbulatory adverse events (AEs) affect up to 25% of the global population and cause over 7 million preventable hospital admissions around the world. Though patients and caregivers are key actors...

Protocol for the development of a tool to map systemic sclerosis pain sources, patterns, and management experiences: a Scleroderma Patient-centered Intervention Network patient-researcher partnership

IntroductionSystemic sclerosis (SSc) is a rare, complex autoimmune rheumatic disease with multiple factors that contribute to pain. People with SSc emphasize the effect pain has on their quality of life, but no studies have systematically examined the frequency and relative importance of different SSc pain sources, patterns of pain from different sources, and pain management experiences. Our objectives are to (1) develop a tool, jointly with researchers, health care providers, and patients, to map sources of pain in SSc, determine patterns of pain from different sources, and understand pain management experiences; and (2) administer the final tool version to participants in the large multinational Scleroderma Patient-centered Intervention Network (SPIN) Cohort.MethodsFirst, we will use validated pain assessment tools as templates to develop an initial version of our pain assessment tool, and we will obtain input from patient advisors to adapt it for SSc. The tool will include questions on pain sources, pain patterns, pain intensity, pain management techniques, and barriers to pain management in SSc. Second, we will conduct nominal group technique sessions with people living with SSc and health care providers who care for people with SSc to further refine the tool. Third, we will conduct individual usability testing sessions with SPIN Cohort participants. Once the tool has been finalized, we will administer it to individuals in the multinational SPIN Cohort, which currently includes over 1,300 active participants from 54 sites in 7 countries. We will perform unsupervised clustering using the KAy-Means for MIxed LArge data (KAMILA) method to identify participant subgroups with similar profiles of pain sources (present or absent) and to evaluate predictors of subgroup membership. We will use latent profile analysis to identify subgroups of participants with similar profiles based on pain intensity scores for each pain source and evaluate predictors.DiscussionOnce completed, our pain assessment tool will allow our team and other researchers to map sources of pain in SSc and to understand pain management experiences of people living with SSc. This knowledge will provide avenues for studies on the pathophysiology of pain in SSc and studies of interventions to improve pain management.

Canadian Association of Radiologists Cardiovascular Imaging Referral Guideline.

The Canadian Association of Radiologists (CAR) Cardiovascular Expert Panel is made up of physicians from the disciplines of radiology, cardiology, and emergency medicine, a patient advisor, and an epidemiologist/guideline methodologist. After developing a list of 30 clinical/diagnostic scenarios, a rapid scoping review was undertaken to identify systematically produced referral guidelines that provide recommendations for one or more of these clinical/diagnostic scenarios. Recommendations from 48 guidelines and contextualization criteria in the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) for guidelines framework were used to develop 125 recommendation statements across the 30 scenarios (27 unique scenarios as 2 scenarios point to the CAR Thoracic Diagnostic Imaging Referral Guideline and the acute pericarditis subscenario is included under 2 main scenarios). This guideline presents the methods of development and the referral recommendations for acute chest pain syndromes, chronic chest pain, cardiovascular screening and risk stratification, pericardial syndromes, intracardiac/pericardial mass, suspected valvular disease cardiomyopathy, aorta, venous thrombosis, and peripheral vascular disease.

Development and validation of a tool to assess patient and caregiver satisfaction for minor pediatric surgical procedures

IntroductionPatient satisfaction questionnaires offer valuable perspectives on patient experiences and the quality of healthcare received. Despite their importance, a gold standard for measuring patient satisfaction in pediatric surgery remains elusive. This study introduces a patient satisfaction questionnaire designed to fill the gap in evaluating patient experiences specifically in pediatric surgical settings, aiming to create a standardized measure for assessing patient satisfaction. MethodsThe think-aloud method was used with patient advisors and an expert panel of hospital stakeholders to refine a novel patient and caregiver satisfaction tool. Through an iterative process, data was gathered, analyzed and the survey progressively revised. The final survey was then pilot tested. ResultsThree patient advisors and seven hospital stakeholders participated in the study. The think-aloud method was used to establish cognitive, content, and face validity. There were five distinct satisfaction domains established. Pilot testing included 30 participants and was used to establish construct validity and test-retest reliability. ConclusionsThis study addresses the existing gap in measuring patient satisfaction in pediatric surgery settings. The think-aloud method was used to ensure cognitive, content, and face validity ensuring multiple domains are addressed. Pilot testing of the tool showed feasibility in both the operating room and minor procedure room setting while also demonstrating test re-test validity. These results indicate that this questionnaire holds promise for use in a variety of pediatric surgical settings. Further research is necessary to confirm these findings in larger, more diverse populations and to assess its impact on improving patient care and experiences. Type of StudySurvey Development and Validation Study. Level of EvidenceIII

Health data social licence: An inclusive process to learn more about the perspectives of experienced public and patient advisors

The term "social licence" has been used to describe which uses and users of health data the public supports - and under what conditions. From November 2022 to January 2023, Health Data Research Network Canada was funded by the Public Health Agency of Canada to explore whether there was consensus among experienced public and patient advisors on: (i) uses of health data that all members supported or opposed and (ii) what constitutes an essential requirement for a health data use or user to be within social licence. The project was conducted in English and French in collaboration with the Interdisciplinary Research Group in Health Informatics (GRIIS) at the University of Sherbrooke. It involved 20 public/patient advisor "participants" and an additional 13 public/patient advisors who served as peer-reviewers, all of whom had prior experience working in a health-related field and/or with health data. The process followed inclusive design principles in that it captured views held by the majority and minority of participants, including views expressed by only one or two participants. After two 2-hour facilitated sessions, participants agreed that it is within social licence for health data to be used (i) by healthcare practitioners to improve patient care, (ii) by governments and administrators to improve the health system, and (iii) by university-based researchers to understand disease and well-being. There was consensus opposition to (i) an individual or organisation selling someone else's identified health data and (ii) health data being used for a purpose that has no public or societal benefit. There was no consensus about what constitutes an essential requirement for a use or users of health data to be with social licence. The results of the process have been published in a non-peer-reviewed report co-authored with participants. This paper has been co-authored with a subset of the participants and peer-reviewers to present a high-level summary of the findings, methodological details, and templates to enable other groups to adapt the process to their own settings. It also presents the results of an anonymous evaluation of the process using the Public and Patient Engagement Evaluation Tool (PPEET), which were mostly positive and identified some areas for improvement.

Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process

PurposeTimely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-design with patients and providers an automatic PC referral process for patients newly diagnosed with stage IV lung cancer.MethodsIn Step 1 of this work, nine one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a working group to provide input on the development and implementation of the automatic referral process. The group met biweekly (virtually) over the course of six months.ResultsFrom interviews, the concept of an automatic referral process was perceived to be acceptable and beneficial for patients. Participants emphasized the need for timely support, access to peer and community resources. Using these findings, the co-design working group identified eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, handouts on supportive care, and interview and survey guides for evaluating the implemented automatic process.ConclusionA co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients.

Men after the sexual assault: The journey from medical service to court

BackgroundThere may be significant physical and psychological consequences and impacts for males who experience sexual assault as adults, however, published literature in this context is sparse, specifically for the investigative outcomes in the criminal legal process. MethodThis clinical audit tracked 138 adult males who presented for forensic and medical sexual assault care from initial presentation to ACT Police investigation and court outcome from 2004 to 2022. ResultsThere were 103/138 (74.6%) males who attended for medical and forensic care within 72 h of the reported assault. Pre-existing mental health conditions were self-reported in 59/138 (42.7%) males.Nearly half of males 67/138 (48.5%) had a medical evidence kit collected. Males presenting for medical care 44/138 (31.2%) went on to report to ACT Policing, 36/44 (81.2%) of cases did not proceed to court. The most common clearance type was inadequate evidence to proceed (17/44, 38.6%).In 8/44 (18.2%) of adult male cases who subsequently reported to ACT Police, the investigation resulted in entry to the judicial process with a suspect charged with a sexual offence. Five of those cases resulting in a conviction. ConclusionsMany adult male patients presented within timeframes that enabled the provision of time critical medical care and provided an opportunity for forensic medical evidence collection. Many adult males 59 (42.7%) self-reported pre-existing mental health conditions upon initial presentation.Attrition occurred throughout the patient journey with many males not reporting to police and thus not presenting in the legal process. This further emphasises the need for independent sexual violence patient advisors to support adult male victims through the medical and criminal justice process.

Diversity, Equity, and Inclusion in Patient and Family Advisory Councils: Advancing Best Practice in Children's Hospitals

This qualitative research study explored practices that support and advance diverse membership in Patient and Family Advisory Councils (PFACs) in children's hospitals and the involvement of PFACs in organization-level diversity, equity, and inclusion work. This study consisted of a focused literature review and 17 key informant interviews. The study sought to identify important learnings about (1) recruiting and supporting patient and family advisors (PFAs) from historically marginalized populations and (2) ways to develop and sustain meaningful partnerships with PFAs and PFACs in diversity, equity, and inclusion work. The study findings highlighted a number of best practices for hospitals to adopt, including more actively reaching out to communities served, addressing barriers to participation through approaches and structures such as specialty PFACs and "tiered" options for participation by PFAs, and co-creation of inclusive environments. To move forward with this work, additional research, true commitment from health care organizations, and shared guidance and tools for the field are needed.

Collaborative research in myositis-related disorders: MIHRA, a global shared community model.

Myositis International Health and Research Collaborative Alliance (MIHRA) is a newly formed purpose-built non-profit charitable research organization dedicated to accelerating international clinical trial readiness, global professional and lay education, career development and rare disease advocacy in IIM-related disorders. In its long form, the name expresses the community's scope of engagement and intent. In its abbreviation, MIHRA, conveys linguistic roots across many languages, that reflects the IIM community's spirit with meanings such as kindness, community, goodness, and peace. MIHRA unites the global multi-disciplinary community of adult and pediatric healthcare professionals, researchers, patient advisors and networks focused on conducting research in and providing care for pediatric and adult IIM-related disorders to ultimately find a cure. MIHRA serves as a resourced platform for collaborative efforts in investigator-initiated projects, consensus guidelines for IIM assessment and treatment, and IIM-specific career development through connecting research networks.MIHRA's infrastructure, mission, programming and operations are designed to address challenges unique to rare disease communities and aspires to contribute toward transformative models of rare disease research such as global expansion and inclusivity, utilization of community resources, streamlining ethics and data-sharing policies to facilitate collaborative research. Herein, summarises MIHRA operational cores, missions, vision, programming and provision of community resources to sustain, accelerate and grow global collaborative research in myositis-related disorders.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors

ObjectivesSince 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams.MethodsA qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools.ResultsThe limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs’ activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need.ConclusionOver time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.