Patient Advisory Research Articles

Mapping gender and sexual minority representation in cancer research: a scoping review protocol.

Addressing the risk of people from gender and sexual minority (GSM) groups experiencing inequities throughout the cancer continuum requires a robust evidence base. In this scoping review, we aim to map the literature on cancer outcomes among adults from GSM groups and the factors that influence them along the cancer continuum. This mixed-methods scoping review will follow the approach outlined by JBI. We will systematically search electronic databases for literature in collaboration with a health sciences librarian. Two reviewers will screen titles and abstracts to determine eligibility based on inclusion criteria, and then retrieve full text articles for data extraction. Results will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. Quantitative data will be qualitized through a narrative interpretation and pooled with qualitative data. We will use meta-aggregation to synthesize findings. This protocol was developed in collaboration with GSM patient and public advisors. We will engage people from GSM groups, community organizations and knowledge users in disseminating results. This review will direct future research efforts by expanding the wider body of research examining cancer disparities across the cancer continuum that GSM groups experience, identifying literature gaps and limitations, and highlighting relevant social determinants of health that influence cancer outcomes for adults from GSM groups.

Engaging Patients and Caregivers to Develop a Patient-Centered Agenda for Comparative Effectiveness Research Focused on the Treatment of Complex Knee Problems.

Complex articular cartilage loss in the knee is being diagnosed more frequently and earlier in life, and patients are faced with major decisions regarding invasive surgical interventions at increasingly younger ages. There is a critical unmet need to provide patient-centered comparative effectiveness research for the hundreds of thousands of patients faced with these treatment decisions each year. Toward filling the need, we developed the Patient AdvisoR Team iN Orthopaedic ReSearch (PARTNORS) program. We recruited a diverse group of patients and caregivers with lived experiences in dealing with complex knee problems to define patient-centered research priorities for comparative biological and artificial knee surgery research for middle-aged adults. Adapting the Stakeholder Engagement in Question Development and Prioritization Method, PARTNORS defined a 20-question list of patient-centered research questions of factors influencing a patients' choice between biological and artificial knee surgeries. The highest prioritized research question related to functional level postsurgery as it relates to daily activities and recreational activities. The second highest prioritized research questions related to insurance coverage and financial costs. Other prioritized research areas included caregiving needs, implant longevity, recovery and rehabilitation time, patient satisfaction and success rates, individual characteristics, and risks. By engaging a group of patients and caregivers and including them as members of a multidisciplinary research team, comparative effectiveness research that includes patient-centered factors that go beyond typical clinical success indicators for knee surgery can be designed to allow physicians and patients to work together toward evidence-based shared decisions. This shared decision-making process helps to align patients' and health care team's goals and expectations to improve outcomes.

Understanding Patients' Preferences and Experiences During an Electronic Health Record Transition.

The Department of Veterans Affairs (VA) has embarked on the largest system-wide electronic health record (EHR) transition in history. To date, most research on EHR-to-EHR transitions has focused on employee and system transition-related needs, with limited focus on how patients experience transitions. (1) Understand patients' preferences for information and support prior to an EHR transition, and (2) examine actual patient experiences that occurred at facilities that implemented a new EHR. We used a two-step approach. We had discussions with geographically diverse patient advisory groups. Discussions informed semi-structured, qualitative interviews with patients. Patients affected by the EHR transition. We met with four patient advisory groups at sites that had not transitioned their EHR. Interviews were conducted with patients who received care at one of two facilities that recently transitioned to the new EHR. Patient advisors identified key areas important to patients during an EHR transition. 1) Use a range of communication strategies to reach diverse populations, especially older, rural patients. 2) Information about the EHR transition should be clear and reinforce trustworthiness. 3) Patients will need guidance using the new patient portal. From the patient interviews, we learned if and how these key areas mapped onto patients' experiences. Patients at the sites that had transitioned learned about the new EHR through a variety of modalities, including letters and banners on the patient portal. However, their experiences varied in terms of information quality, leading to frustrations during and between healthcare encounters. Patient portal issues exacerbated frustrations. These raised concerns about the accuracy and security of the overall EHR. Maintaining clear communication across patients, local leadership, and providers throughout an EHR transition is essential for successful implementation. Patient-facing communications can set expectations, and help patients receive adequate support, particularly related to the patient portal.

Engaging patients as teachers in a baccaulaureate nursing reproductive health care course: A qualitative study

BackgroundTeaching nursing students about the principles and practical application of person-centered care is an essential yet challenging component of nursing education. Integrating patients as teachers to share their personal stories of maternity care can elicit positive outcomes toward students achieving course objectives. ObjectivesTo determine how the educational experience of having patients as teachers in the classroom could influence students' awareness of patients' perceptions of their maternity care, delivering person-centered care and the roles of nursing in their future practice. DesignRetrospective qualitative study of student reflections. SettingsReproductive health course within a BSN program. ParticipantsNinety-nine second semester BSN student reflections. MethodsTwo course faculty and a qualitative nurse researcher conducted a thematic content analysis of written student reflections. ResultsThree primary themes emerged from the students' reflections of hearing patient and family advisors describe their maternity experiences: 1) awareness of the impact of nursing practice on patient and family well-being, 2) awareness of personal biases and emotions about difficulties in maternity care, and 3) appreciation to hear from patients directly as part of didactic coursework. ConclusionsIncluding patients as teachers is an enhanced method to aid nursing students in understanding the humanistic and impactful roles of nursing in the clinical setting.

A progress update on the implementation of a multi-faceted intervention to spread and scale bronchiolitis appropriate care in Alberta

Background: Acute viral bronchiolitis is among the most common illnesses seen in the emergency department (ED) and is the leading cause of infant hospitalization in Canada. Successful implementation of an audit and feedback (A&F) intervention at the Alberta Children’s Hospital (ACH) reduced use of low-value interventions and tests for bronchiolitis. Opportunities to improve bronchiolitis management are likely also present in other urban and rural settings. This project will spread and scale the work completed at ACH to 16 sites across Alberta focusing on children under one-year diagnosed with bronchiolitis who managed both in ED and inpatient settings.
 
 Methods: Site implementation included two key aspects:
 
 Audit & Feedback (A&F) – review practice data, facilitated discussion with clinicians and their teams, and identify enablers and barriers to practice change.
 
 The seasonality of bronchiolitis cases (November to April) helped inform the frequency of A&F feedback reports: mid-season (February) and end-of-season (April)
 Clinical dashboards are being developed within the new clinical information system – ConnectCare - that will provide teams with real-time feedback on potential practice change.
 
 
 Site Specific Implementation Plan – Resources are tailored to fit site needs including the use of posters, handouts and practice guidelines; utilization of order sets; and staff and family education resources.
 
 The bronchiolitis initiative is eligible for Continuing Medical Education accreditation through a newly developed easy-to-navigate web-based tool, My Practice Improvement – MyPI. An Education Working Group consisting of patient and family advisors was developed. Family resources included a QR code handout to a “How to suction your baby’s nose” instructional video to help parents/families care for their child at home. The HEAL handout provided links to additional resources for families. Family centred care participants were consulted on the development of a family resource: “Bronchiolitis: A roadmap from admission until discharge”.
 
 Evaluation Methods: The primary objective of the study is a 25% absolute reduction in chest radiograph use. Chest x-rays utilization can be readily obtained from administrative data at all sites in the project. Return visits to the ED within 72 hours of discharge will be monitored as a balancing measure to assess potential unintended consequences of de-implementing low-value tests and interventions in the ED. The provincial rollout of ConnectCare and tableau dashboard integration will enable a broader array of tests and treatments that are used in the management of bronchiolitis to be reported. The spread and scale of this project has now engaged with ED sites in non-tertiary settings in urban and rural areas where patient demographics and resource availability could pose additional challenges. Providing education and resources for these sites is one way to ensure equitable healthcare access for all Albertans.
 
 Results: Six facilities implemented rollout from September to November 2021 with a total of 151 physicians attending the A&F sessions. Chest x-ray use at sites that had a 2021 session compared to sites with a planned session in 2022 revealed a decrease after one bronchiolitis season. A difference in difference analysis between the two groups demonstrated that sites with a 2021 session had a -14.3% (95%CI -21.4 to -7.1) decrease in chest x-ray use. As of November 17, 2022, there have been 12 A&F sessions attended by 255 physicians, nurses and respiratory therapists.
 
 Advice and Lessons Learned: 
 
 Capacity for scale and spread intiatives should be accounted for early in planning processes. We brought on two additional medical leads to facilitate sessions in fall 2022 due to an increase in the number of sites involved. Without the additional assistance, the success of roll out may have been jeopardized.
 Flexibility is key. Several sites across the province are continuing to deal with staffing shortages and recent high volumes of influenza, RSV and COVID are putting EDs over capacity. Sites have demonstrated incredible flexibility with engagement and session availabiltiy despite these circumstances. We changed session dates to help balance workloads as some sites had ConnectCare implementation concurrent with the start of the bronchiolitis season.

The Alberta Health Services Emergency Strategic Clinical Network™ Quality Improvement and Innovation Forum 2023

Evidence-based research and quality improvement work are pivotal to health systems meeting their goals. Translating findings and disseminating innovative practices to new settings occurs in part through knowledge translation events, such as conferences and workshops. The annual Emergency Strategic Clinical Network™ (ESCN) Quality Improvement and Innovation Forum fills a gap between local and national events. It is devoted to sharing methods and results of emergency department projects in Alberta among those working in emergency care. The event provides an opportunity for those pursuing quality improvement initiatives in emergency medicine to network with one another, share innovative projects, share experience, and translate promising works to new settings. In addition, the event provides an opportunity to identify projects for potential development through local, provincial, or national funding opportunities. After providing only an online forum throughout the pandemic, this year’s event was held in-person in Red Deer, Alberta and live-streamed for those who wished to attend virtually. Nineteen oral presentations were delivered including a keynote address by Dr. Leigh Chapman, Chief Nursing Officer of Canada. Strong attendance shows the value practitioners see in the forum. In 2023, approximately 160 educators, managers, nurses, physicians, researchers, and patient advisors attended the forum. Post-event evaluation survey feedback suggests that most of the participants found the presentations helpful and that the virtual presentations were as effective as in-person presentations. Attendees indicated that many of the initiatives presented would be explored further. We are grateful to the Canadian Journal of Emergency Nursing for publishing abstracts from the event.

Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project

Underserved patients face substantial barriers to receiving cancer genetic services. The Cancer Health Assessments Reaching Many (CHARM) study evaluated ways to increase access to genetic testing for individuals in underserved populations at risk for hereditary cancer syndromes (HCS). Here, we report the successful implementation of CHARM in a low-resource environment and the development of sustainable processes to continue genetic risk assessment in this setting. The research team involved key clinical personnel and patient advisors at Denver Health to provide input on study methods and materials. Through iterative and collaborative stakeholder engagement, the team identified barriers and developed solutions that would both facilitate participation in CHARM and be feasible to implement and sustain long term in clinical care. With a focus on infrastructure building, educational modules were developed to increase awareness among referring providers, and standard methods of identifying and managing HCS patients were implemented in the electronic medical record. Three hundred sixty-four DH patients successfully completed the risk assessment tool within the study, and we observed a sustained increase in referrals to genetics for HCS (from 179 in 2017 to 427 in 2021 post-intervention). Implementation of the CHARM study at a low-resourced safety net health system resulted in sustainable improvements in access to cancer genetic risk assessment and services that continue even after the study ended.Trial registration NCT03426878

Developing, pilot testing, and refining requirements for 3 EHR-integrated interventions to improve diagnostic safety in acute care: a user-centered approach.

To describe a user-centered approach to develop, pilot test, and refine requirements for 3 electronic health record (EHR)-integrated interventions that target key diagnostic process failures in hospitalized patients. Three interventions were prioritized for development: a Diagnostic Safety Column (DSC) within an EHR-integrated dashboard to identify at-risk patients; a Diagnostic Time-Out (DTO) for clinicians to reassess the working diagnosis; and a Patient Diagnosis Questionnaire (PDQ) to gather patient concerns about the diagnostic process. Initial requirements were refined from analysis of test cases with elevated risk predicted by DSC logic compared to risk perceived by a clinician working group; DTO testing sessions with clinicians; PDQ responses from patients; and focus groups with clinicians and patient advisors using storyboarding to model the integrated interventions. Mixed methods analysis of participant responses was used to identify final requirements and potential implementation barriers. Final requirements from analysis of 10 test cases predicted by the DSC, 18 clinician DTO participants, and 39 PDQ responses included the following: DSC configurable parameters (variables, weights) to adjust baseline risk estimates in real-time based on new clinical data collected during hospitalization; more concise DTO wording and flexibility for clinicians to conduct the DTO with or without the patient present; and integration of PDQ responses into the DSC to ensure closed-looped communication with clinicians. Analysis of focus groups confirmed that tight integration of the interventions with the EHR would be necessary to prompt clinicians to reconsider the working diagnosis in cases with elevated diagnostic error (DE) risk or uncertainty. Potential implementation barriers included alert fatigue and distrust of the risk algorithm (DSC); time constraints, redundancies, and concerns about disclosing uncertainty to patients (DTO); and patient disagreement with the care team's diagnosis (PDQ). A user-centered approach led to evolution of requirements for 3 interventions targeting key diagnostic process failures in hospitalized patients at risk for DE. We identify challenges and offer lessons from our user-centered design process.

A188 INFORMING IMMUNOCOMPROMISED POPULATIONS: AN EFFECTIVE AND EFFICIENT COVID-19 KNOWLEDGE TRANSLATION STRATEGY

Abstract Background Throughout the COVID-19 pandemic, one of the major challenges was conveying expert health information, which was evolving rapidly, to confer population-level advice; this was especially relevant to at risk groups, such as those who are immunocompromised due to conditions like inflammatory bowel disease (IBD) or medications to manage disease. Purpose To provide sufficient information to those with IBD (>0.75% of the Canadian population or roughly 300,000 individuals) and their carers to allow self assessment of personal risks related to COVID-19. Method On March 17, 2020, Crohn’s and Colitis Canada (CCC) convened the COVID-19 & IBD Taskforce comprised of adult and pediatric gastroenterologists, IBD nurses, infectious disease experts, scientists, public health officials, communication and government relations experts, and patient advisors. The taskforce met weekly (later monthly) to synthesize rapidly evolving information on COVID-19 and personal risk assessment. Expert reviews of population-level recommendations were tailored to the IBD community and communicated through website FAQs and infographics; a public-oriented burden report with foci on additional special populations (e.g., pregnant people, pediatrics, seniors), IBD medications, and mental health and access to care during the pandemic; and through a moderated, online webinar series. The 1- to 2-hour webinar recordings were then curated into 3- to 5-minute video clips to answer specific questions and uploaded to CCC’s YouTube page. YouTube and website metrics show the continued efficacy of this strategy. Result(s) More than 24,778 households registered for the first 23 webinars, with more than one third registering for more than one webinar. As of April 1, 2021 (just after the 23rd webinar), there have been 54,136 views of the archived full (1- to 2-hour) webinars and a further 78,862 views of individual webinar segments (3- to 5-minute curated clips), for a total of 126,187 views. Additionally, traffic to the CCC website increased exponentially with 484,755 unique views to the COVID-19 web pages, viewed for up to 28.29 minutes. Since April 2021, after an additional seven webinars, these numbers have continued to swell to 33,243 (registrants), 81,370 (webinar views), 92,862 (segment views), and 810,156 (unique website views); this is demonstrative of the continued impact of the electronic knowledge translation strategy. Image Conclusion(s) While many within the IBD community were secluded during the early portions of the pandemic due to lockdown restrictions and public health advice not tailored to immunocompromised individuals, advice tailored to this community and presented through electronic methods proved to be an effective and efficient knowledge translation strategy. Please acknowledge all funding agencies by checking the applicable boxes below CCC Disclosure of Interest None Declared

Canadian Association of Radiologists Diagnostic Imaging Referral Guidelines: a guideline development protocol.

Comprehensive diagnostic imaging referral guidelines are an important tool to assist referring clinicians and radiologists in determining the safest and best-clinical-value diagnostic imaging study for their patients; the Canadian Association of Radiologists (CAR) last produced its diagnostic imaging referral guidelines in 2012. In partnership with several national organizations, referring clinicians, radiologists, and patient and family advisors from across Canada, the association is redoing its referral guidelines using a new methodology for guideline development, and these guideline recommendations will be suited for integration into clinical decision support systems. Expert panels of radiologists, referring clinicians and a patient advisor will work with epidemiologists at the CAR to create guidelines across 13 clinical sections. The expert panel for each section will first create a comprehensive list of clinical and diagnostic scenarios to include in the guidelines. Canadian Association of Radiologists epidemiologists will then conduct a systematic rapid scoping review to identify systematically produced guidelines from other guideline groups. The corresponding expert panel will develop diagnostic imaging recommendations for each clinical and diagnostic scenario using the recommendations identified from the scoping review and contextualize them to the Canadian health care systems. The expert panels will accomplish this using an adapted Grading of Recommendations Assessment, Development and Evaluation framework, which reflects the benefits and harms, values and preferences, equity, accessibility, resources and cost. Freely available, up-to-date, comprehensive Canadian-specific diagnostic imaging referral guidelines are needed. A transparent and structured guideline-development approach will aid the CAR and its partners in producing guidelines across its 13 sections.

Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint Disorders (TMDs).

Understanding symptoms of temporomandibular joint disorders (TMDs) can help doctors and patients document, monitor, and manage the disease and help researchers evaluate interventions. Patients with TMDs experience symptoms ranging from mild to severe, primarily in the head and neck region. This study describes findings from formative patient focus groups to capture, categorize, and prioritize symptoms of TMDs towards the development of a patient-reported outcome measure (PROM). We conducted ten focus groups with 40 men and women with mild, moderate, and severe TMD. Focus groups elicited descriptions of symptoms and asked participants to review a list of existing patient-reported outcomes (PROs) from the literature and patient advisor input and speak to how those PROs reflect their own experience, including rating their importance. We identified 52 distinct concepts across six domains: somatic, physical, social, sexual, affective, and sleep. Focus groups identified the ability to chew and eat; clicking, popping, and other jaw noises; jaw pain and headaches; jaw misalignment or dislocation; grinding, clenching, or chewing, including at night; and ear sensations as most important. Participants with severe TMDs more often reported affective concepts like depression and shame than did participants with mild or moderate TMDs. Findings support PROM item development for TMDs, including selecting existing PROMs or developing new ones that reflect patients' lived experiences, priorities, and preferred terminology. Such measures are needed to increase understanding of TMDs, promote accurate diagnosis and effective treatment, and help advance research on TMDs.

Adolescent experiences of the safe surgical checklist and surgical care processes

To explore the perceptions, satisfaction, and needs of adolescent surgical patients with their perioperative pathway, including consent, the Safe Surgical Checklist (SSC), and post-operative care. We used qualitative methodology to examine adolescent experiences with surgical consent, SSC, and post-operative care. We purposively recruited ten patients aged 13-17 undergoing emergency and elective surgery and obtained consent from parents and patients. Semi-structured interview scripts were co-developed with an adolescent patient advisor, and interviews were performed, recorded, and transcribed verbatim. Thematic analysis was based on grounded theory and Participants were recruited and interviewed until thematic saturation was achieved. Four themes emerged in thematic analysis: (1) Autonomy and Inclusion-Adolescents desire to participate in the consent process, including signing their own consent when appropriate, (2) Value of Repetition-Adolescents value the repetition of information in the pre-operative check and feel safer when the team reinforces the information, (3) Importance of Caregiver Involvement - Adolescents valued their caregivers being involved in critical conversations and decision making, and (4) Importance of Transparency in Communication-Adolescents desire to be directly given information about their surgery post-operatively and not told to parents alone. Adolescents are situated uniquely between childhood and adulthood. Adolescents desired to be directly involved in the decision-making process of their surgery, including participation in the SSC and discussion of post-operative complications.

Elicitation of Health State Utilities Associated with Progression from Bacillus Calmette-Guerin (BCG) Unresponsive Non-muscle Invasive Bladder Cancer (NMIBC).

The treatments for high-grade non-muscle invasive bladder cancer (NMIBC) vary between bladder preserving intravesical approaches and radical cystectomy. The impact of these treatments on health-related quality of life may vary widely. The purpose of this study was to elicit the general public's perspective on quality of life, measured as utility scores associated with treatment for Bacillus Calmette-Guerin (BCG)-unresponsive NMIBC and disease progression, for supporting economic evaluation of newly developed treatments for NMIBC. Part I involved the development and testing of health states describing NMIBC, which was informed by a rapid review, expert input and a patient advisor. Part II involved elicitation of societal utility values for the different health states. Time trade-off (TTO) interviews were conducted with members of the UK general public. Five health states described different NMIBC scenarios including disease recurrence and progression. Participants ranked each health state, followed by the TTO valuation exercise. Descriptors included NMIBC symptom severity, impact and treatment characteristics. In total, 202 members of the general public participated. The mean age was 46 (standard deviation [SD] 14.6) years. Sample mean (SD) EQ-5D-5L visual analogue scale (VAS) and index scores were 83.2 (12.3) and 0.89 (0.18), respectively. Mean utilities were 0.781 for No High-Grade Recurrence, 0.586 for High-Grade Recurrence, 0.572 for >1-Year Post-cystectomy and 0.283 for metastatic disease. The First Year Post-cystectomy path health state had a mean utility of 0.288. Pairwise comparisons found statistically significant differences between utilities (p < 0.001), except between High-Grade Recurrence and > 1-Year Post-cystectomy (p = 0.524). There were significant differences in utility scores by age and employment status. This study provides utility scores for health states describing living with NMIBC, which is associated with a significant health-related quality-of-life burden. These values address an existing gap in available data and have the potential to be used in models evaluating the cost-effectiveness of both current and newly developed treatments for bladder cancer.

Co-developing patient and family engagement indicators for health system improvement with healthcare system stakeholders: a consensus study

ObjectiveTo develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach.DesignThis...

Implementation of a Patient Advisor Program for Neuroendocrine Tumor Patients: Acceptability, Benefits and Potential Challenges

Searchable abstracts of presentations at key conferences in endocrinology ISSN 1470-3947 (print) | ISSN 1479-6848 (online)

The patient perspective on COVID-19 restrictions lifting: a descriptive study of resuming in-person meetings

Background: As COVID-19 mandates continue to evolve, at both the state and health system levels, patient input is needed. Methods: This study gathered opinions, feedback, and levels of comfort regarding in-person participation from Patient Advisors at a healthcare system located in Detroit, Michigan. The final version of the survey consisted of 13 questions prompting Patient Advisors to discuss comfort levels, protocols, and feelings around returning to in-person meetings after more than a year of meeting virtually. Results: A total of 68 Patient Advisors completed the survey. Most Patient Advisors felt that positively about meeting in-person (i.e., 55% felt ‘happy’ vs. 4% felt ‘scared’), believed only those unvaccinated should wear masks (n=26), and 86.6%, believed that there should always be a virtual participation option moving forward. Moreover, Patient Advisors wanted to be asked about their vaccination status before a meeting (n=66) and 86.6% endorsed being comfortable and willing to share their vaccination status. Qualitative analysis of two free-text response questions revealed Patient Advisors felt appreciated that their input was requested and wanted autonomy when considering in-person meetings. Conclusion: Findings were used to create the Patient Engaged Research Center’s In-Person Participation Action Plan and indicate the need to include patient voice in outcomes that directly impact them and their well-being.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informationaland educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical teamand themselves. A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patientsand on the clinical team. In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stressand become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. By mobilizing their experiential knowledge, APs provide emotional, informational, cognitiveand navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

Acceptability of wearable devices for measuring mobility remotely: Observations from the Mobilise-D technical validation study.

This study aimed to explore the acceptability of a wearable device for remotely measuring mobility in the Mobilise-D technical validation study (TVS), and to explore the acceptability of using digital tools to monitor health. Participants (N = 106) in the TVS wore a waist-worn device (McRoberts Dynaport MM + ) for one week. Following this, acceptability of the device was measured using two questionnaires: The Comfort Rating Scale (CRS) and a previously validated questionnaire. A subset of participants (n = 36) also completed semi-structured interviews to further determine device acceptability and to explore their opinions of the use of digital tools to monitor their health. Questionnaire results were analysed descriptively and interviews using a content analysis. The device was considered both comfortable (median CRS (IQR; min-max) = 0.0 (0.0; 0-20) on a scale from 0-20 where lower scores signify better comfort) and acceptable (5.0 (0.5; 3.0-5.0) on a scale from 1-5 where higher scores signify better acceptability). Interviews showed it was easy to use, did not interfere with daily activities, and was comfortable. The following themes emerged from participants' as being important to digital technology: altered expectations for themselves, the use of technology, trust, and communication with healthcare professionals. Digital tools may bridge existing communication gaps between patients and clinicians and participants are open to this. This work indicates that waist-worn devices are supported, but further work with patient advisors should be undertaken to understand some of the key issues highlighted. This will form part of the ongoing work of the Mobilise-D consortium.

Testing a modified electronic version of the Edmonton symptom assessment system-revised for remote online completion with ambulatory cancer patients in Alberta, Canada.

The cancer program in Alberta, Canada routinely collects patient-reported outcomes using the Edmonton symptom assessment system-revised (ESAS-r). The program recently launched the province's new clinical information system which has expanded functionality, allowing patients to complete symptom questionnaires remotely online, instead of completing a paper form at the clinic. This study aimed to test a modified electronic version of the ESAS-r [(e)ESAS-r] with patients, to assess the feasibility of completion and questionnaire clarity. Staff, patients, and other stakeholders worked to create modified definitions for ESAS-r symptoms, to aid in patient understanding. Patient and family advisors were recruited to test the questionnaire. Participants completed an online mock-up of the (e)ESAS-r and answered questions about technical issues. One-to-one cognitive interviews were held to discuss each symptom definition in detail. Modifications were made based on the feedback and a second round of interviews was held to finalize the wording. In total, 19 patients and 7 family advisors participated. All but one (96.2%) completed the questionnaire without assistance and had no technical issues. Participants requested certain wording modifications and that definitions be added for all symptoms for consistency. Very few participants reported any confusion with the final definitions. The (e)ESAS-r was tested for clarity and ease of completion and was determined to be suitable for remote online use with ambulatory cancer patients. The enhanced definitions on the new questionnaire were clear to patients and helped ensure they understood the meaning of each symptom they were asked to rate.

Ethical Foundations of the Accompanying Patient's Role for an Enhanced Patient Experience: A Scoping Review.

In recent years, recognizing patients' experiential knowledge to improve the quality of care has resulted in the participation of patient advisors at various levels of healthcare systems. Some who are working at the clinical level are called accompanying patients (AP). A PRISMA-ScR exploratory scoping review of the literature was conducted on articles published from 2005 to 2021. Articles not in English or French and grey literature were excluded. The databases searched included Medline, PubMed, Scopus, and Google Scholar. The data were organized according to the similarities in the ethical foundations of the included papers. Out of 2095 identified papers, 8 met inclusion criteria. Terms used to describe APs included peer support, resource parent, and peer health mediator. The clinical settings included psychiatry/mental health and neonatology. APs, patients, healthcare professionals, managers and policy makers were included in the studies. Three personal ethical foundations describing the foundations of the AP role were found: resilience, listening skills and altruism. The ethical foundations of this role also addressed interpersonal and interprofessional relationships with other actors in the healthcare system. The literature on the ethical foundations of APs is sparse, with heterogeneous methodologies. Further studies mobilizing well-defined methodologies would further validate the current results and deepen our understanding of the ethical foundations of the AP role.