Patient Advisory Research Articles

DEVELOPMENT AND INITIAL PSYCHOMETRIC VALIDATION OF A REAL-TIME PATIENT REPORTED EXPERIENCE MEASURE

Patient-reported experience measures (PREMs) capture the patient’s view about his or her experience while receiving care across the continuum of care. Your Voice Matters (YVM), a real-time electronic PREM tool, was developed to measure the patient experience in the outpatient cancer setting and to drive quality improvements in the cancer system. This study describes the development and validation of YVM, a real-time electronic PREM tool in cancer services. Cognitive interviewing was conducted with patient and family advisors for both the French (n = 3) and English (n = 5) versions of the YVM tool. YVM was administered through five Regional Cancer Centers (RCCs) between April and August 2015. Shapley value regression used overall experience-dependent variables to determine core items and items eligible for removal from YVM. Exploratory factor analysis was used to determine the underlying factor structure.Internal consistency reliabilities were calculated using Cronbach’s alpha. A total of 557 YVM tools were completed by cancer patients in the treatment phase. Shapley value regression identified five lower scoring items for removal. Exploratory factor analysis showed that a 27-item, five-factor structure reflected the underlying patient experience dimensions in the cancer treatment visit. Cronbach’s alpha of 0.827 for all items suggested good internal consistency. YVM is a validated tool for measuring the experience of cancer patients during the treatment phase through the visit trajectory in real time. YVM will help drive improvements based on patients’ preferences and needs, and will provide robust patient experience data for cancer care delivery.

The impact of patient engagement on trials and trialists in Ontario, Canada: An interview study with IMPACT awardees

BackgroundA key component of patient-oriented research is the engagement of patients as partners in the design and conduct of health research. While there is now national infrastructure and networks to support the engagement of patients as partners, there remain calls for promising practices and success stories. In particular, there remains a keen interest in evaluating the impact that patient engagement has on health research studies. We aimed to investigate the impact that patient engagement had on health research conducted in Ontario, Canada.MethodsOur sampling frame was studies that were awarded funding by the Ontario SPOR SUPPORT Unit. Semi-structured interviews were conducted with 10 principal investigators, members of research teams, and patient partners. Interviews explored the role of patient partners, the perceived impact of the patient engagement on the study, challenges faced, and advice for other researchers considering patient engagement. Data were analysed using the thematic analysis method with transcripts coded independently by two members of the study team. All coding and subsequent theme generation were discussed until consensus was achieved.ResultsThere was variation in the methods used to engage patients and other stakeholders, the roles that patients and stakeholders occupied, and where they had input. Interviewees discussed two major areas of impact of patient engagement on research: impact on the study about which they were being interviewed, which tended to relate to improved relevancy of the research to the study population, and impact on themselves which led to changes in their own practice or approaches to future research. Identified challenges to patient engagement included: identifying and reaching patient advisors or patient partners, time-related challenges, and maintaining engagement over the course of the research.ConclusionsThere remains a need to further build out the concept of relevancy and how it may be operationalised in practice. Further, the longer-term impacts of patient engagement on researchers and research teams remains under-explored and may reveal additional elements for evaluation. Challenges to patient engagement remain, including identifying and maintaining engagement with partners that reflect the diversity of the population of interest.

Evolution of a research team: the patient partner perspective

IntroductionDespite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners’ perspective.MethodsQualitative interviews were conducted by independent qualitative researchers to collect and summarize the experiences and perspectives of the 16 Patient Partners (PPs) on the study team for PeRson EmPowered Asthma RElief (PREPARE), a large, pragmatic study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. This study was funded by the Patient-Centered Outcomes Research Institute.ResultsThis paper, authored by the PPs themselves, summarizes qualitative interview findings. The journey of the PREPARE PPs began with a desire to learn more about asthma and advocate for other individuals with asthma. Many challenges, including intimidation and lack of trust, were overcome as the research team prioritized building a comfortable environment in which PPs’ lived experiences, opinions, and cultural beliefs are valued, and in which PP voices are centered and respected. Over time, the PPs gained confidence in expressing ideas and feedback, and in taking ownership of their role as valued members of the research team. The PP experience has had tremendous personal and professional impact on the PPs themselves, while also modeling a change in the way researchers and PPs relate to and partner with each other.ConclusionThe partnership between PPs and researchers in the PREPARE study has elevated the PP role from external advisors to integral and empowered members of a collective research team, and the partnership developed and evolved over time.

Patient and healthcare team recommended medication adherence strategies for hydroxychloroquine: results of a qualitative study informing intervention development

ObjectivePatients identified as black and from disadvantaged backgrounds have a twofold higher hydroxychloroquine (HCQ) non-adherence, which contributes to worse lupus outcomes and disparities. Yet, most adherence interventions lack tailored strategies...

The Alberta Health Services Emergency Strategic Clinical Network™ Quality Improvement and Innovation Forum presented on February 22, 2022.

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 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. Despite the challenges presented by the COVID-19 pandemic, 2022 was the fourth consecutive year the ESCN has held this event.
 The event provides an opportunity for those working on quality improvement in emergency medicine to network with one another, share innovative projects, share know how 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. This year’s forum was, again, held virtually due to the ongoing pandemic. 18 teams provided oral presentations including the ESCN patient advisors who shared details of how to engage patients in quality improvement work.. Not all abstracts are published in this collection, as some abstracts will have been previously published elsewhere.
 Strong attendance shows the value practitioners see in the forum. In 2022, approximately 121 educators, managers, nurses, physicians and researchers from across Alberta and British Columbia, attended the forum. Post-event evaluation survey feedback suggests that the online format was greatly appreciated and many of the initiatives presented would be pursued further by participants.
 The findings presented in the abstracts are solely the work of the submitting authors. The ESCN does not guarantee the accuracy of any reported information. The views expressed in the abstracts are solely the views of the authors and do not represent the ESCN or Alberta Health Services.

Engagement of patient and family advisors in health system redesign in Canada.

Globally, there has been a shift towards integrated care delivery and patient-centredness in the design of health services. Such a transformation is underway in Ontario, which is progressively using an interprofessional team-based approach known as Ontario Health Teams (OHTs) to deliver care. During their initial development, OHTs were required to integrate patient and families' preferences, experiences and opinions in the form of consultation and partnership with patient and family advisors (PFAs). This study aimed to understand how PFAs were involved in the early stages of planning for health system change and the perceived benefits of including PFAs in system reform. This study used a qualitative descriptive design. Semi-structured interviews were conducted with 126 participants at 12 OHTs, including PFA (n = 16) and non-PFA (n = 110) members (e.g. clinicians). Data were analysed thematically. We identified four themes; mechanisms of engagement, motivations to engage, challenges to PFA engagement and PFAs' impact and added value. Overall, participants viewed PFA engagement positively and PFAs felt valued and empowered. There remain logistical challenges around PFA compensation, and the amount of time and training expected of PFAs. However, all participants believed that developing an understanding of the patient, caregiver and family experience will strengthen the engagement of PFAs in OHT planning, decisions and policies. Diverse approaches to and stages of PFA engagement fostered meaningful and highly valued contributions to OHT development. These were considered critical to successfully achieving the mandate of patient-centred care reform.

The Impact of Social Media on Skin Care: A Narrative Review

Introduction. Social media has completely taken over multiple aspects of our lives, it has a prominent influence on an individual’s decisions, particularly regarding their lifestyle. Social networking sites such as Facebook, Twitter, Instagram, TikTok play a prominent role in one’s choices on their skin care, cosmetics, aesthetic procedures, and dermatological treatments. The aim of the study. To review current literature on the role of social media and its impact on skin care. Materials and methods. Search databases – Google Scholar, Research4life, ScienceDirect, PubMed, and Scopus were used. Employing content analysis, methods of comparative analysis & bibliosemantics the literature survey concerning social media and its impact on social media, was conducted. A total of 50 English language publications were selected and thoroughly reviewed based on their relevance to the subject. Results. The beauty industry uses social media as a marketing strategy to reach out to its consumers around the globe, particularly targeting consumers like adolescents and women with skin problems. In recent years, social media has turned from an entertainment platform to an educational platform for many users, providing awareness about various skin-related conditions such as skin cancer and even acne treatment. Dermatologists and medical aestheticians are being proactive in sharing information about common skin conditions. Although currently the dependency on social media has increased due to a variety of reasons, there exists a large amount of false and dubious information on the social media posted by unverified users with no legitimate medical background, hence using these sites for making choices related to our skin care is still a debatable option. Conclusions. A dermatologist is no longer the sole patient advisor, this role being gradually replaced by social media. As a result, social media users are well informed having access to a variety of information, resulting in a large number of people being influenced over their skin care choices. This may do more harm than profit, since every skin is fairly individual organ and a generalized skin care routine may not provide the desirable look one strives for.

The role of health care organizations in patient engagement: Mechanisms to support a strong relationship between patients and clinicians.

Patient engagement (PE) is critical to improving patient experience and outcomes, as well as clinician work life and lowering health care costs, yet health care organizations (HCOs) have limited guidance about how to support PE. The engagement capacity framework considers the context of engagement and examines precursors to engagement, including patients' self-efficacy, resources, willingness, and capabilities. The aim of this study was to explore clinician and patient perspectives related to mechanisms through with the HCOs can facilitate PE through the lens of the engagement capacity framework. We administered an online open-ended survey to clinicians and patient advisors across the United States, including questions focused on the influences of, barriers to, and skills and tools required for PE. A common theme emerged focusing on the role of HCOs in facilitating engagement. Our analysis examined all responses tagged with the "health care system" code. Over 750 clinicians and patient advisors responded to our survey. Respondents identified offering advice and support for patients to manage their care (self-efficacy), providing tools to facilitate communication (resources), working to encourage connection with patients (willingness), and training for HCO employees in cultural competency and communication skills (capabilities) as important functions of HCOs related to engagement. HCOs play an important role in supporting a strong partnership between the patient and clinicians. Our study identifies important mechanisms through which HCOs can fulfill this role. HCO leadership and administration can help establish the culture of care provided. Policies and initiatives that provide appropriate communication tools and promote culturally competent care can increase engagement.

Patient Perspectives on Care Transitions From Hospital to Home

Understanding the patient's perspective of their care transition process from hospital or skilled nursing facility (SNF) to home may highlight gaps in care and inform system improvements. To gather data about patients' care transition experiences and factors associated with follow-up appointment completion. A survey tool was developed with input from patient advisors and organizations participating in a collaborative quality initiative. Seventeen hospitals, 12 practitioner organizations, and 6 SNFs in Michigan collaborated to identify shared patients who were aged 18 years and older, had a working telephone number, recently returned home or to an assisted living facility with a diagnosis of congestive heart failure or chronic obstructive pulmonary disease, or after an SNF stay. Using consecutive sampling, interviewers collected 5 telephone surveys per month. From October 2018 to December 2019, patients or caregivers were surveyed via telephone 8 to 12 days after discharge from a hospital or SNF. Data were analyzed from March 2020 to January 2022. Care transition experiences. The primary outcome was to identify patient-perceived gaps during care transition experiences, including postdischarge follow-up. On the basis of pilot data, the response rate was estimated at 34%, yielding 1257 surveys. Of 1257 survey respondents (mean [SD] age, 70 [12.94] years for 968 patients for whom age data was available), 654 (52%) were female; 829 (74%) were White, 250 (22%) were Black or African American, and 40 (4%) were another race. Eleven percent of patients reported not receiving a telephone number to call for postdischarge questions. Nearly 80% of patients (977 patients) received a follow-up telephone call, and most found it valuable. Twenty percent of patients (255 patients) reported at least 1 social determinant of health issue. Lack of transportation was associated with reduced likelihood of completing a follow-up visit, decreasing the odds of completing a follow-up by nearly 70% (odds ratio [OR], 0.31; 95% CI, 0.18-0.53; P < .001). Compared with other patient groups, Black patients were less likely to report completing a postdischarge follow-up visit (OR, 0.49; 95% CI, 0.36-0.67; P < .001) or to receive prescribed medical equipment (OR, 4.23; 95% CI, 1.30-13.83; P = .02). An examination of patient discharge experiences from a hospital or SNF identified inconsistencies in care transition processes, social determinants of health issues needing to be addressed after discharge, and racial disparities between patients who attend follow-up appointments. Physicians should be aware of these findings and their consequences for patient experiences.

Adapting and responding to a pandemic: Patient and family advisory councils in children's hospitals during COVID-19

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid adaptations, most children’s hospital PFACs transitioned successfully to virtual meetings, with 86% reporting that their PFAC met at least once from March to December 2020 and 84% indicating that their PFAC planned to meet as frequently or more frequently than before the pandemic. The majority of respondents (72%) reported that attendance at virtual PFAC meetings was the same as or better than with in-person meetings. Interview participants reported benefits associated with virtual meetings, including the potential ability to recruit and engage PFAs who better reflected the diversity of the patients and families served by the hospitals. Children’s hospitals are well-positioned to be leaders in the field, contributing to the development of new approaches, lessons learned, and best practices moving forward. This is especially true as hospitals continue to navigate the evolving realities of the COVID-19 pandemic, and as PFACs address challenges associated with maintaining diverse, equitable, and inclusive councils.

A Stakeholder-Informed Ethical Framework to Guide Implementation of Suicide Risk Prediction Models Derived from Electronic Health Records

Objective Develop a stakeholder-informed ethical framework to provide practical guidance to health systems considering implementation of suicide risk prediction models. Methods In this multi-method study, patients and family members participating in formative focus groups (n = 4 focus groups, 23 participants), patient advisors, and a bioethics consultant collectively informed the development of a web-based survey; survey results (n = 1,357 respondents) and themes from interviews with stakeholders (patients, health system administrators, clinicians, suicide risk model developers, and a bioethicist) were used to draft the ethical framework. Results Clinical, ethical, operational, and technical issues reiterated by multiple stakeholder groups and corresponding questions for risk prediction model adopters to consider prior to and during suicide risk model implementation are organized within six ethical principles in the resulting stakeholder-informed framework. Key themes include: patients’ rights to informed consent and choice to conceal or reveal risk (autonomy); appropriate application of risk models, data and model limitations and consequences including ambiguous risk predictors in opaque models (explainability); selecting actionable risk thresholds (beneficence, distributive justice); access to risk information and stigma (privacy); unanticipated harms (non-maleficence); and planning for expertise and resources to continuously audit models, monitor harms, and redress grievances (stewardship). Conclusions Enthusiasm for risk prediction in the context of suicide is understandable given the escalating suicide rate in the U.S. Attention to ethical and practical concerns in advance of automated suicide risk prediction model implementation may help avoid unnecessary harms that could thwart the promise of this innovation in suicide prevention. HIGHLIGHTS Patients’ desire to consent/opt out of suicide risk prediction models. Recursive ethical questioning should occur throughout risk model implementation. Risk modeling resources are needed to continuously audit models and monitor harms.

Patient Engagement in a Multi-Stakeholder Workshop to Plan the Collection of Patient-Oriented Outcomes for Children with Inherited Metabolic Diseases.

Building on a study to develop core outcome sets for children with rare inherited metabolic diseases, the purpose of this workshop was to inform the design of longitudinal pediatric registries that support registry-based clinical trials. This workshop was co-designed by two patient/family partner investigators and attended by two family advisors who received preparatory training. Patient partners and advisors recommended integrating the collection of registry data into everyday life and highlighted the importance of transparent communication and attention to the issue of integration of patient-reported data into clinical care. We propose a need to explore strategies for engaging patients in post-project knowledge translation.

Identifying priorities for artificial intelligence and primary care in ontario: A multi-stakeholder engagement event.

CONTEXT: Artificial intelligence (AI) is increasingly being recognized as having potential importance to primary care (PC). However, there is a gap in our understanding about where to focus efforts related to AI for PC settings, especially given the current COVID-19 pandemic. OBJECTIVE: To identify current priority areas for AI and PC in Ontario, Canada. STUDY DESIGN: Multi-stakeholder engagement event with facilitated small and large group discussions. A nominal group technique process was used to identify and rank challenges in PC that AI may be able to support. Mentimeter software was used to allow real-time, anonymous and independent ranking from all participants. A final list of priority areas for AI and PC, with key considerations, was derived based on ranked items and small group discussion notes. SETTING: Ontario, Canada. POPULATION STUDIED: Digital health and PC stakeholders. OUTCOME MEASURES: N/A. RESULTS: The event included 8 providers, 8 patient advisors, 4 decision makers, 3 digital health stakeholders, and 12 researchers. Nine priority areas for AI and PC were identified and ranked, which can be grouped into those intended to support physician (preventative care and risk profiling, clinical decision support, routine task support), patient (self-management of conditions, increased mental health care capacity and support), or system-level initiatives (administrative staff support, management and synthesis of information sources); and foundational areas that would support work on other priorities (improved communication between PC and AI stakeholders, data sharing and interoperability between providers). Small group discussions identified barriers and facilitators related to the priorities, including data availability, quality, and consent; legal and device certification issues; trust between people and technology; equity and the digital divide; patient centredness and user-centred design; and the need for funding to support collaborative research and pilot testing. Although identified areas do not explicitly mention COVID-19, participants were encouraged to think about what would be feasible and meaningful to accomplish within a few years, including considerations of the COVID-19 pandemic and recovery phases. CONCLUSIONS: A one-day multi-stakeholder event identified priority areas for AI and PC in Ontario. These priorities can serve as guideposts to focus near-term efforts on the planning, development, and evaluation of AI for PC.

"This Is about My Health": Partnering with Patients and Families to Share Knowledge and Tools about Healthcare Communication for Adults with Intellectual and Developmental Disabilities.

This project involved patients with intellectual and developmental disabilities and a family caregiver as advisors on a knowledge translation (KT) effort on healthcare communication. The project demonstrated that with the right supports, patient and family advisors can effectively share their experiences and add a powerful voice to KT activities. Lessons learned included the importance of being creative, responsive and flexible to support the advisors, of recognizing their expertise and of building capacity in multiple advisors to allow for diverse voices and greater flexibility. This work requires adequate time and funding, which needs to be factored into planning.

Involving patients and clinicians in a pilot randomised clinical trial of spinal manual therapy versus nerve root injection for lumbar radiculopathy: protocol of a patient and public involvement project

IntroductionA patient and public involvement (PPI) project will be embedded within the SALuBRITY pilot trial, a two parallel group, double sham controlled, randomised clinical trial. The study aims to compare...

Documenting patients\u2019 and providers\u2019 preferences when proposing a randomized controlled trial: a qualitative exploration

BackgroundWith advances in cancer diagnosis and treatment, women with early-stage breast cancer (ESBC) are living longer, increasing the number of patients receiving post-treatment follow-up care. Best-practice survivorship models recommend transitioning ESBC patients from oncology-provider (OP) care to community-based care. While developing materials for a future randomized controlled trial (RCT) to test the feasibility of a nurse-led Telephone Survivorship Clinic (TSC) for a smooth transition of ESBC survivors to follow-up care, we explored patients’ and OPs’ reactions to several of our proposed methods.MethodsWe used a qualitative study design with thematic analysis and a two-pronged approach. We interviewed OPs, seeking feedback on ways to recruit their ESBC patients for the trial, and ESBC patients, seeking input on a questionnaire package assessing outcomes and processes in the trial.ResultsOPs identified facilitators and barriers and offered suggestions for study design and recruitment process improvement. Facilitators included the novelty and utility of the study and simplicity of methods; barriers included lack of coordination between treating and discharging clinicians, time constraints, language barriers, motivation, and using a paper-based referral letter. OPs suggested using a combination of electronic and paper referral letters and supporting clinicians to help with recruitment. Patient advisors reported satisfaction with the content and length of the assessment package. However, they questioned the relevance of some questions (childhood trauma) while adding questions about trust in physicians and proximity to primary-care providers.ConclusionsOPs and patient advisors rated our methods for the proposed trial highly for their simplicity and relevance then suggested changes. These findings document processes that could be effective for cancer-patient recruitment in survivorship clinical trials.

Overdiagnosis in the emergency department: a sharper focus

Overdiagnosis occurs when a person's symptoms or life experiences are given a diagnostic label that ultimately causes them more harm than good. We describe the complex drivers of overdiagnosis spanning five interconnected domains, which can lead to numerous negative impacts on patients. Emergency physicians are often tasked with making timely clinical assessments, decisions, and diagnoses that can unintentionally result in overdiagnosis. Three pertinent areas related to overdiagnosis in Emergency Medicine: anaphylaxis, subsegmental pulmonary embolism, and low-risk chest pain are discussed. For a broader perspective, insight on overdiagnosis from medical students and a patient advisor are presented. The perspectives illustrated are meant to spark reflection on: the ethics of labeling a person with a diagnosis, current clinical practices, the limitations of medical education, and patient care and communication in the context of overdiagnosis in the Emergency Department.

Abstract P4-12-12: Assessing the impact of the COVID-19 pandemic on cancer treatment decision-making and care experiences

Abstract BACKGROUND: While the COVID-19 pandemic has reshaped how oncology is practiced, we sought to understand itseffects on treatment decision-making and care experiences amongst cancer patients at the Tom BakerCancer Centre in Calgary, Canada. METHODS: A 24 item, cross-sectional survey was developed based on literature review and iterative feedback fromoncology physicians, nurses, and a patient advisor. Survey domains included fear of COVID-19 andperceived risk, uptake of COVID-19 public health measures, cancer treatment decision-making duringthe pandemic, and cancer care experiences during the pandemic. Demographic, cancer and treatment-related information was obtained from the electronic medical record for patients who consented andcompleted the survey. In the first quarter of 2021, 161 patients accrued including 44 breast cancerpatients. The cohort characteristics and survey responses were summarized using descriptive statistics. RESULTS: For the 44 participants with breast cancer, all were female and the median age was 59 years (range 35-83 years). Our breast cancer cohort was almost evenly split between those with stage I-III (45.5%) andthose with metastatic disease (54.5%). Time since diagnosis was as follows: less than 1 year (17patients), 1-3 years (10 patients), 3-5 years (5 patients), and more than 5 years (9 patients). Treatmentsreceived since declaration of the pandemic included: surgery (21 patients), radiation (17 patients),chemotherapy (25 patients), endocrine therapy (25 patients), and other systemic therapies such as boneand anti-HER2 agents (15 patients). Just over half of the participants (54.5%) agreed or strongly agreedthat they were at increased risk of contracting COVID19; however, fewer patients expressed beinguncomfortable thinking about COVID-19 (45.4%), afraid of COVID-19 (38.6%), or fearful of dying fromCOVID19 (31.8%). The vast majority (&amp;gt;93%) of patients followed public health recommendations formitigating the risk of contracting COVID-19 (i.e. masking, frequent hand washing/sanitization, and socialdistancing) and 70.4% expressed a willingness to receive the vaccine when available. Of therespondents, 19 had undergone testing for COVID-19 at least once and 3 tested positive. Only 2 patientsreported that their surgical course was altered due to the pandemic and no patients declinedtreatments or perceived delays or modifications in therapies otherwise. Of 25 breast participants whohad experienced a cancer-related telehealth appointment during the pandemic, 21 (84%) agreed orstrongly agreed with being satisfied with the encounter. CONCLUSION: The COVID-19 pandemic caused minimal perceived disruption to care amongst a small cohort of breastcancer patients being treated at our centre. While experience with a cancer-related telehealthappointment was not universal, our findings support acceptability of its use. Citation Format: Noura Alsafar, Desiree Hao, Nimira Alimohamed, Sunil Samnani, Sasha Lupichuk. Assessing the impact of the COVID-19 pandemic on cancer treatment decision-making and care experiences [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-12.

Co-creating with patients an impact framework across the medicine\u2019s life cycle: a qualitative study exploring patients\u2019 experiences of involvement in and perceptions of impact measures

BackgroundThe biopharmaceutical industry is challenged with efficiently delivering medicines that patients truly value. This can be addressed by engaging patients and caregivers throughout a medicine’s life cycle, ensuring that products meet the needs and expectations of those who take them. While isolated best practice examples of patient engagement exist, they remain relatively ad hoc and not fully embedded within Research & Development (R&D) practices. To encourage more patient engagement, the ‘impact’ of patient engagement projects (PEP) must be objectively measured and demonstrated. Some frameworks have been proposed; however, there is no evidence of widespread adoption, nor have patients’ perspectives been robustly explored. The objective of this qualitative study was therefore to understand patients’ perspectives of impact measurement that can be systematically applied within a biopharmaceutical company.MethodsSemi-structured interviews were conducted with 13 patient organisation (PO) representatives exploring their experiences of engagement and reflections on 23 candidate patient engagement impact measures categorised into five groups: Medicines R&D Priorities; Clinical Trial Design; Regulatory & Market Access Submissions; Product Support & Information; and Disease Support & Information. Thematic analysis was undertaken and impact measures revised in line with interview participant feedback. Emerging themes and revisions to impact measures were validated at a joint workshop with 4 patient advisors representing 4 POs.ResultsThe study revealed that PO representatives feel a deep sense of accomplishment and ownership when collaborating on PEPs with biopharmaceutical companies. They largely conceptualise ‘impact’ as positive, tangible and useful outcomes. The revisions made to the pre-defined patient engagement impact measures fell into three broad categories: (1) a requirement for greater context; (2) capturing the nature of patient influence; and (3) terminology changes. The greatest number of revisions concerned ‘requiring greater context’, for example, including additional descriptions, patient quotes, and satisfaction.ConclusionsThis study sheds light on how patient advocates view ‘impact’. Typically this means delivering ‘value’ important for them. Therefore, the authors of this paper created the term ‘value-impact’ to comprehensively characterise this conceptualisation, and propose a value-impact measurement plan, incorporating longitudinal data. Through this understanding and in light of other recently published work, wide-scale adoption and implementation of the measurement of value-impact across the biopharmaceutical industry can be realised.

Bridging the Patient Engagement Gap in Research and Quality Improvement Utilizing the Henry Ford Flexible Engagement Model.

This paper was intended to share a flexible engagement model (FEM) for organizing a structure to obtain patient input regarding health care operations and research, provide greater detail on recruitment, retention, and dissemination strategies, and demonstrate successes and potential applications in other health care settings. Utilizing a pragmatic approach, the Patient-Engaged Research Center (PERC) at Henry Ford Health System developed the FEM, a 7-step process to introduce interested patients/caregivers to the patient advisor program and to follow up with placements. PERC developed a meeting evaluation to measure participant satisfaction. Retention and dissemination methods to keep participants consistently engaged included monthly email blasts, an annual patient advisor retreat, and inviting patient advisors to attend/present at local and national conferences. As of January 2020, the program had 419 patient advisors. Almost 50% self-reported as Caucasian and 31% as African American; 73% were women, and most were 45-74 years of age. Recruitment methods proved effective, as 85% of advisors were initially engaged through print and digital marketing. Mean advisor orientation workshop evaluation scores regarding content, facilitators, and logistics were high, with all 4.5 or higher on a Likert scale of 1 (strongly negative) to 5 (strongly positive). Given the FEM's flexible nature and adaptability, PERC has been successful in effectively leveraging the patient voice and experiences in research and health care delivery. Further research could investigate the model's generalizability, return on investment, and how to formally embed its methodology institutionally.