Using the Power Wheel as a transformative tool to promote equity through spaces and places of patient engagement.

BACKGROUND: Patient engagement is the active collaboration between patient partners and health system partners towards a goal of making decisions that centre patient needs-thus improving experiences of care, and overall effectiveness of health services in alignment with the Quintuple Aim. An important but challenging aspect of patient engagement is including diverse perspectives particularly those experiencing health inequities. When such populations are excluded from decision-making in health policy, practice and research, we risk creating a healthcare ecosystem that reinforces structural marginalisation and perpetuates health inequities. APPROACH: Despite the growing body of literature on knowledge coproduction, few have addressed the role of power relations in patient engagement and offered actionable steps for engaging diverse patients in an inclusive way with a goal of improving health equity. To fill this knowledge gap, we draw on theoretical concepts of power, our own experience codesigning a novel model of patient engagement that is equity promoting, Equity Mobilizing Partnerships in Community, and extensive experience as patient partners engaged across the healthcare ecosystem. We introduce readers to a new conceptual tool, the Power Wheel, that can be used to analyse the interspersion of power in the places and spaces of patient engagement. CONCLUSION: As a tool for ongoing praxis (reflection +action), the Power Wheel can be used to report, reflect and resolve power asymmetries in patient-partnered projects, thereby increasing transparency and illuminating opportunities for equitable transformation and social inclusion so that health services can meet the needs and priorities of all people.

Learning Health Systems: A Paradigm Shift in What We Can Do about Digital Health Inequities.

Learning health systems (LHSs) embed social accountability into everyday workflows and can inform how governments build bridges across the digital health divide. They shape partnerships using rapid cycles of data-driven learning to respond to patients' calls to action for equity from digital health. Adopting the LHS approach involves re-distributing power, which is likely to be met with resistance. We use the LHS example of British Columbia's 811 services to highlight how infrastructure was created to provide care and answer questions about access to digital health, outcomes from it and the financial impact passed on to patients. In the concluding section, we offer an accountability framework that facilitates partnerships in making digital health more equitable.

#HowNotToDoPatientEngagement: the engaging with purpose patient engagement framework based on a twitter analysis of community perspectives on patient engagement.

BACKGROUND: Evaluation of patient engagement practices are frequently researcher-driven, researcher-funded, and asymmetric in power dynamics. Little to no literature on patient experiences in patient engagement exist that is are not framed by institutionally-driven research inquiries (i.e., from the lens of a research team lead, or healthcare administrative setting). Understanding these perspectives can help us understand: (i)what matters to patients when they are engaged in research; (ii)why it matters to them, and(iii) how to improve patient engagement practices, so that the needs and priorities of patients are consistently met. METHODS: This is a patient partner-initiated study. Study authors (including patient partners) conducted a conventional and summative content analysis of textual data retrieved from a highly engaged conversation on Twitter regarding the hashtags #HowNotToDoPatientEngagement and #HowToDoPatientEngagement posted between February 2018 to June 2021. Twitter is a microblogging platform that allows for free-flowing discussions between users not pre-bound by specific community groupings (like within that of Facebook). RESULTS: A total of 276 tweets were retrieved from 178 separate contributors across seven geographical locations. Four stakeholder groups were identified. We generated 24 codes, nine subthemes and five overarching themes: respect, support, collaboration, inclusivity and impact. Four of these themes are closely aligned with the Strategy for Patient Oriented (SPOR) Patient Engagement framework. We identify impact as a separate and new theme. INTERPRETATION: Based on our findings we offer the Engaging with Purpose Patient Engagement Framework that defines and describes respect, support, collaboration, inclusivity and impact as five key pillars of meaningful patient engagement.

Patient engagement in research is an important aspect of healthcare, but most studies on the topic are driven by researchers and healthcare settings. We wanted to understand patient experiences of patient engagement from the lens of patient partners that occurred outside the traditional norms of evaluating such engagements. To do this, we analyzed data from Twitter, a platform where users freely share their thoughts and opinions. Posts that included the hashtags #HowNotToDoPatientEngagement and #HowToDoPatientEngagement were of focus because they resonated with members of the online patient partner community who wanted to improve the current state of patient partnership. We identified 276 tweets from 178 contributors across seven geographic locations. Five themes emerged from the study: respect, support, collaboration, inclusivity, and impact which led to the development of the Engaging with Purpose Patient Engagement Framework. This framework highlights respect, support, collaboration, inclusivity, and impact as the five essential pillars of meaningful patient engagement in research. By understanding and implementing these pillars, researchers and institutions can improve patient engagement practices and ensure that the needs and priorities of patients are effectively addressed.

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems.

INTRODUCTION: Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit. METHODS: The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design. RESULTS: The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1-5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports. CONCLUSION: The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work. PATIENT CONTRIBUTION: Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.

A qualitative study exploring how patient engagement activities were sustained or adapted in Canadian healthcare organizations during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic caused disruptions across healthcare systems globally exposing the precarious state of patient engagement across all levels of healthcare. While evidence is emerging to describe how engagement was affected across various settings, insights about how some organizations at the policy and practice level of healthcare were able to sustain or adapt patient engagement activities is lacking. OBJECTIVE: This paper addresses the following research question: "How were healthcare, government, and patient partner organizations able to sustain or adapt patient engagement activities during the COVID-19 pandemic?" METHODS: A qualitative descriptive study was conducted to understand how patient engagement activities were maintained or adapted in a variety of healthcare, government, and patient partner organizations in Canada throughout the pandemic. This analysis was part of a larger qualitative, multiple case study where one-to-one interviews were conducted with organizational leaders, managers and patient partners. RESULTS: The following themes were identified as key aspects of maintaining or adapting patient engagement activities: 1) having an embedded organizational culture of patient engagement; 2) adapting patient engagement activities to focus on COVID-19 response efforts; 3) having patient partners who exercised leadership and advocacy to support patient care and experiences during the pandemic; and 4) leveraging virtual technology as a communication tool to engage patient partners. CONCLUSION: This paper highlights important insights that may be useful to other health care organizations on how to sustain or adapt patient engagement activities during a healthcare crisis. Having patient engagement embedded within an organization's culture supported by, but not limited to, infrastructure, resources, investments in dedicated staff and patient partner leadership, and communication strategies and tools enabled continued patient engagement activities during the pandemic.

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

BACKGROUND: A 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. METHODS: Our 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. RESULTS: There 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. CONCLUSIONS: There 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.

We interviewed 10 individuals associated with studies that were funded through the Ontario Strategy for Patient Oriented Research (SPOR) Unit. We asked them about how they had engaged patients, families or caregivers in their study, how this engagement had influenced their study, the challenges they faced, and advice for other researchers considering engaging with patients, families and caregivers. We found that patients had been engaged in a variety of ways and at different times. The changes brought about by the patient engagement varied between studies but tended to reflect an improvement in how relevant the study was to patients. Researchers also shared how engagement with patients, families, and caregivers had changed their approaches to future research. Key challenges facing researchers included finding partners that were appropriate for the study, as well making sure that the approach to engagement overcame issues such as financial or logistical barriers that could prevent patients, families or caregivers from partnering with the study.

Equity-Mobilizing Partnerships in Community (EMPaCT): Co-Designing Patient Engagement to Promote Health Equity.

Equity-Mobilizing Partnerships in Community (EMPaCT) is a novel approach to patient engagement that centres diverse lived experiences and promotes equity-oriented and inclusive partnerships. As an independent community table, EMPaCT is made up primarily of patients/diverse members of community. Researchers and other decision makers come to this table with their projects to learn how to make their project more inclusive and equitable. In this paper, we detail how we used participatory co-design to define, build and grow EMPaCT as an innovative and scalable patient partnership model that promotes bottom-up action for health equity.

A scoping review of patient engagement activities during COVID-19: More consultation, less partnership.

BACKGROUND: The COVID-19 pandemic has had a devastating impact on healthcare systems and care delivery, changing the context for patient and family engagement activities. Given the critical contribution of such activities in achieving health system quality goals, we undertook to address the question: What is known about work that has been done on patient engagement activities during the pandemic? OBJECTIVE: To examine peer-reviewed and grey literature to identify the range of patient engagement activities, broadly defined (inclusive of engagement to support clinical care to partnerships in decision-making), occurring within health systems internationally during the first six months of the COVID-19 pandemic, as well as key barriers and facilitators for sustaining patient engagement activities during the pandemic. METHODS: The following databases were searched: Medline, Embase and LitCOVID; a search for grey literature focused on the websites of professional organizations. Articles were required to be specific to COVID-19, describe patient engagement activities, involve a healthcare organization and be published from March 2020 to September 2020. Data were extracted and managed using Microsoft Excel. A content analysis of findings was conducted. RESULTS: Twenty-nine articles were included. Few examples of more genuine partnership with patients were identified (such as co-design and organizational level decision making); most activities related to clinical level interactions (e.g. virtual consultations, remote appointments, family visits using technology and community outreach). Technology was leveraged in almost all reported studies to interact or connect with patients and families. Five main descriptive categories were identified: (1) Engagement through Virtual Care; (2) Engagement through Other Technology; (3) Engagement for Service Improvements/ Recommendations; (4) Factors Impacting Patient Engagement; and (5) Lessons Learned though Patient Engagement. CONCLUSIONS: Evidence of how healthcare systems and organizations stayed connected to patients and families during the pandemic was identified; the majority of activities involved direct care consultations via technology. Since this review was conducted over the first six months of the pandemic, more work is needed to unpack the spectrum of patient engagement activities, including how they may evolve over time and to explore the barriers and facilitators for sustaining activities during major disruptions like pandemics.

Building Equitable Patient Partnerships during the COVID-19 Pandemic: Challenges and Key Considerations for Research and Policy.

The unequal social and economic burden of the COVID-19 pandemic is evident in racialized and low-income communities across Canada. Importantly, social inequities have not been adequately addressed and current public policies are not reflective of the needs of diverse populations. Public participation in decision-making is crucial and there is, therefore, a pressing need to increase diversity of representation in patient partnerships in order to prevent the further exclusion of socially marginalized groups from research and policy making. Deliberate effort and affirmative action are needed to meaningfully engage and nurture diverse patient partnerships by broadening the scope of the patient community to include excluded or underrepresented individuals or groups. This will help us co-develop ways to enhance access and equity in healthcare and prevent the systematic reproduction of structural inequalities that have already been heightened by the COVID-19 pandemic.

PROM-ED: Development and Testing of a Patient-Reported Outcome Measure for Emergency Department Patients Who Are Discharged Home.

STUDY OBJECTIVE: Common outcomes of care valued by emergency department (ED) patients who are not hospitalized have been characterized, but no measurement instrument has been developed to date. We developed and validated a patient-reported outcome measure for use with adult ED patients who are discharged home (PROM-ED). METHODS: In previous research, 4 main outcomes of importance to ED patients were defined: symptom relief, understanding, reassurance, and having a plan. We developed a bank of potential questions (phase 1) that were first tested for suitability through cognitive debriefing with patients (phase 2). Revised questions were then tested quantitatively with a large panel of participants who had recently received ED care (phase 3). Informed by these results, a panel of experts used a modified Delphi process to make decisions on item reduction. The resulting instrument (PROM-ED 1.0) was then evaluated for its measurement properties (structural validity, hypothesis testing, and reliability). RESULTS: Sixty-seven questions divided among 4 scales (1 for each outcome domain) were assembled. In accordance with cognitive debriefing with 8 patients (phase 2), 15 questions were modified and 13 removed. Testing of these questions with 444 participants (phase 3) identified problematic floor or ceiling effects (n=10), excessive correlations between items (n=11), and low item-total correlations (n=7). The expert panel (22 participants, phase 4) made decisions using this information on the exclusion of items, resulting in 22 questions across 4 scales that together constitute the PROM-ED 1.0. Testing provided good evidence of validity and test-retest reliability (n=200). CONCLUSION: The PROM-ED enables the measurement of patient-centered outcomes of importance to patients receiving care in the ED who are not hospitalized. These data could have important applications in research and care improvement.

Cell therapy with intravascular administration of mesenchymal stromal cells continues to appear safe: An updated systematic review and meta-analysis.

BACKGROUND: Characterization of the mesenchymal stromal cell (MSC) safety profile is important as this novel therapy continues to be evaluated in clinical trials for various inflammatory conditions. Due to an increase in published randomized controlled trials (RCTs) from 2012-2019, we performed an updated systematic review to further characterize the MSC safety profile. METHODS: MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials and Web of Science (to May 2018) were searched. RCTs that compared intravascular delivery of MSCs to controls in adult populations were included. Pre-specified adverse events were grouped according to: (1) immediate, (2) infection, (3) thrombotic/embolic, and (4) longer-term events (mortality, malignancy). Adverse events were pooled and meta-analyzed by fitting inverse-variance binary random effects models. Primary and secondary clinical efficacy endpoints were summarized descriptively. FINDINGS: 7473 citations were reviewed and 55 studies met inclusion criteria (n = 2696 patients). MSCs as compared to controls were associated with an increased risk of fever (Relative Risk (RR) = 2·48, 95% Confidence Interval (CI) = 1·27-4·86; I2 = 0%), but not non-fever acute infusional toxicity, infection, thrombotic/embolic events, death, or malignancy (RR = 1·16, 0·99, 1·14, 0·78, 0·93; 95% CI = 0·70-1·91, 0·81-1·21, 0·67-1·95, 0·65-0·94, 0·60-1·45; I2 = 0%, 0%, 0%, 0%, 0%). No included trials were ended prematurely due to safety concerns. INTERPRETATIONS: MSC therapy continues to exhibit a favourable safety profile. Future trials should continue to strengthen study rigor, reporting of MSC characterization, and adverse events. FUNDING: Stem Cell Network, Ontario Institute for Regenerative Medicine and Ontario Research Fund.

Inappropriateness of health care in Canada: a systematic review protocol.

BACKGROUND: There is increasing recognition in Canada and globally that a substantial proportion of health care delivered is inappropriate as evidenced by (1) harmful and/or ineffective practices being overused, (2) effective clinical practices being underused, and (3) other clinical practices being misused. Inappropriate health care leads to negative patient experiences, poor health outcomes, and inefficient use of scarce health care resources. The purpose of this study is to conduct a systematic review of inappropriate health care in Canada. Our specific objectives are to (1) systematically search and critically review published and grey literature for studies on inappropriate health care in Canada; (2) estimate the nature and magnitude of inappropriate health care in Canada and its provincial and territorial jurisdictions. METHODS: We will include all quantitative study designs reporting objective or subjective measurements of inappropriate health care in Canada over the last 10 years. We will search the following online databases: MEDLINE, Cochrane Central Register of Controlled Trials, EconLit, and ISI-Web of Knowledge, which contains Web of Science Core Collection-Citation Indexes, Science Citation Index Expanded, Conference Proceedings Citation Index-Science, and Conference Proceedings Citation Index-Social Science & Humanities. We will also search grey literature sources to identify provincial and national audits of inappropriate health care. Two authors will independently screen, assess data quality, and extract data for synthesis. Study findings will be synthesized narratively. We will organize our data into three care categorizations: preventive care, acute care, and chronic care. We will provide a compendium of inappropriate health care for each care category for Canada and each Canadian province and territory, where sufficient data exists, by calculating (1) overall medians of underuse, overuse, and misuse of clinical practices and (2) the range of medians of underuse, overuse, and misuse for each clinical practice investigated. DISCUSSION: This review will result in the first-ever evidence-based compendium of inappropriate health care in Canada. We will also develop detailed reports of inappropriate health care for each Canadian province and territory. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018093495.

FLUID trial: a protocol for a hospital-wide open-label cluster crossover pragmatic comparative effectiveness randomised pilot trial.

INTRODUCTION: 0.9% saline and Ringer's lactate are the two most common resuscitation crystalloid fluids. 0.9% saline may lead to hyperchloraemic metabolic acidosis and may be associated with impaired kidney function and death. Few large multicentre randomised trials have been conducted to evaluate the effect of these two fluids on clinically important outcomes. METHODS: FLUID is a pragmatic pilot cluster randomised crossover trial in which four hospitals will be randomised to normal saline or Ringer's lactate for 14 weeks, then crossover to the alternative fluid for the subsequent 14 weeks after 1 to 3 week transition. With waiver of informed consent, all adult and paediatric patients admitted to participating sites will be included in the FLUID trial except for neonates. Primary feasibility outcome is study fluid protocol adherence (target:≥80%). Secondary feasibility outcomes include time to research ethics board (REB) approval and readiness to trial initiation (≤3 months from REB submission and approval). Primary (composite of death or re-admission to hospital in first 90 days of index hospitalisation) and secondary clinical outcomes for the future large FLUID trial will be described. Protocol adherence will be collected by site at specified time points. All clinical data will be obtained at patient level through provincial health administrative data held at the Institute for Clinical Evaluative Sciences (ICES). Event rates for the primary and secondary outcomes will be described using frequencies and proportions with 95% CIs. Intracluster and interperiod correlation coefficients will be calculated from population-level data available at ICES. ETHICS AND DISSEMINATION: The study protocol has been approved by the Ottawa Health Science Research Ethics Board. The FLUID pilot will determine feasibility, and ICES data across all potential sites in Ontario will allow calculation of sample size parameter estimates to inform the design and implementation of the large trial. TRIAL REGISTRATION NUMBER: NCT02721485; Pre-results.

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy.

PLAIN ENGLISH SUMMARY: The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include:In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailtyEngagement opportunities need to be flexible (e.g., location, time, type)Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessaryThe education and training of citizens, health and social care providers, and researchers on engagement practicesPatient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planningInfluencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care. ABSTRACT: Older adults are the fastest growing segment of Canada's population resulting in an increased number of individuals living with frailty. Although aging and frailty are not synonymous the proportion of those who are frail increases with age. Frailty is not defined by a single condition, but rather a health state characterized by an increased risk of physical, mental, or social decline, deterioration of health status, and death. Recognizing frailty is important because earlier detection allows for program implementation focused on prevention and management to reduce future hospitalization, improve outcomes, and enhance vitality and quality of life. Even though older adults living with frailty are significant users of health care resources, their input is under-represented in research, health care decision making, and health policy formulation. As such, engaging older adults living with frailty and their family caregivers is not only an ethical imperative, but their input is particularly important as health and social care systems evolve from single-illness focused to those that account for the complex and chronic needs that accompany frailty. In this review, we summarize existing literature on engaging older adults living with frailty and their family caregivers across three settings: research, health and social care, and policy. We discuss strategies and barriers to engagement, and ethical and cultural factors and implications. Although this review is mainly focused on Canada it is likely to be broadly applicable to many of the health systems in the developed world where aging and frailty pose important challenges.