Evaluating the impact of engaging older adults and service providers as research partners in the co-design of a community mobility-promoting program: a mixed methods developmental evaluation study.

BACKGROUND: Increasingly researchers are partnering with citizens and communities in research; less is known about research impacts of this engagement. EMBOLDEN is an evidence-informed, mobility-promoting intervention for older adults co-designed by a 26-person Strategic Guiding Council (SGC) of health/social service providers and older adult citizens. This study evaluated research partners' perceptions of engagement strategies, the engagement context, strengths, areas for improvement, as well as the impacts of the guiding council on older-adult identified priority areas. METHODS: This study was guided by developmental evaluation, working in partnership with four older adult SGC members who helped to set evaluation priorities, decide methods, and adapt patient-centred evaluation tools. Data sources included a questionnaire, focus groups and document analysis of meeting notes from 16 SGC meetings that took place between December 2019 and February 2022. A thematic approach to analysis guided the coding of focus group transcripts and SGC meeting notes. Convergent mixed methods guided the integration and presentation of qualitative and quantitative data sources in a joint display of evaluation results. RESULTS: Of 26 SGC members, nine completed the evaluation squestionnaire, and five participated in focus groups. Around two thirds of the SGC commonly attended each meeting. EMBOLDEN's SGC was structured to include a diverse group (across gender, ethnicity and discipline) of older adults and service providers, which was perceived as a strength. Engagement processes were perceived as inclusive and well-facilitated, which stimulated discussion at meetings. Advantages and disadvantages of engaging with the SGC virtually, as compared to in-person (as was the case for the first 3 SGC meetings) were also discussed. Impacts of the SGC were identified across preparatory, execution phase and translational stages of research. Impacts of SGC involvement on members were also described. CONCLUSION: Older adult research partners played an important role designing, implementing, and evaluating co-design approaches in this study. Older adults and service providers can make important contributions to the design, delivery and sharing results of health research through their lived expertise and connections to community. This project contributes to the growing field of citizen and community engagement in research by offering a participatory approach to engagement evaluation that considers diversity, satisfaction, and impact.

It is becoming common for researchers to ask patients and caregivers to become involved with their studies as partners. By partnering with people who have first-hand experience with a condition, researchers hope their studies will be more relevant, run efficiently and have more impact than studies designed by researchers alone. Over the last twenty years, there has been a significant increase in the number of published papers that involve patients and caregivers, but few papers mention what changed because of this involvement. Researchers need to know the best ways to involve patients and caregivers and the impact of doing so.This study aimed to find out how a council of older adults (OAs) and service providers (SPs) impacted a study about collaboratively designing and testing a mobility intervention. This study aimed to find out how council members felt about their involvement in this study, by asking them what went well and what could have been improved.This study used a questionnaire, focus groups and analyzed council meeting notes to inform this study. Four OA council members helped design the study, decide research methods, and adapt wording of questions (focus groups, questionnaire). Between 19% and 35% of council members completed evaluation activities. They felt the study strengths were the diversity of the council, and a welcoming environment for discussion. The council impacted how the study was designed, carried out and how results were shared. Results from this study can improve patient partnership engagement, experiences, and impacts in future studies.

Policy and practices in primary care that supported the provision and receipt of care for older persons during the COVID-19 pandemic: a qualitative case study in three Canadian provinces.

BACKGROUND: The effects of the COVID-19 pandemic on older adults were felt throughout the health care system, from intensive care units through to long-term care homes. Although much attention has been paid to hospitals and long-term care homes throughout the pandemic, less attention has been paid to the impact on primary care clinics, which had to rapidly change their approach to deliver timely and effective care to older adult patients. This study examines how primary care clinics, in three Canadian provinces, cared for their older adult patients during the pandemic, while also navigating the rapidly changing health policy landscape. METHODS: A qualitative case study approach was used to gather information from nine primary care clinics, across three Canadian provinces. Interviews were conducted with primary care providers (n = 17) and older adult patients (n = 47) from October 2020 to September 2021. Analyses of the interviews were completed in the language of data collection (English or French), and then summarized in English using a coding framework. All responses that related to COVID-19 policies at any level were also examined. RESULTS: Two main themes emerged from the data: (1) navigating the noise: understanding and responding to public health orders and policies affecting health and health care, and (2) receiving and delivering care to older persons during the pandemic: policy-driven challenges & responses. Providers discussed their experiences wading through the health policy directives, while trying to provide good quality care. Older adults found the public health information overwhelming, but appreciated the approaches adapted by primary care clinics to continue providing care, even if it looked different. CONCLUSIONS: COVID-19 policy and guideline complexities obliged primary care providers to take an important role in understanding, implementing and adapting to them, and in explaining them, especially to older adults and their care partners.

A scoping review of the use of intelligent assistive technologies in rehabilitation practice with older adults.

PURPOSE: There is growing interest in intelligent assistive technologies (IATs) in the rehabilitation and support of older adults, however, the factors contributing to or preventing their use in practice are not well understood. This study aimed to develop an overview of current knowledge on barriers and facilitators to the use of smart technologies in rehabilitative practice with older adults. MATERIALS AND METHODS: We undertook a scoping review following guidelines proposed by Arksey and O'Malley (2005) and Levac et al. (2010). A computerised literature search was conducted using the Scopus and Ovid databases, yielding 7995 citations. Of these, 94 studies met inclusion criteria. Analysis of extracted data identified themes which were explored in semi-structured interviews with a purposefully selected sample of seven clinical rehabilitation practitioners (three physical therapists, two occupational therapists, and two speech-language pathologists). RESULTS: Barriers and facilitators to using these technologies were associated with accessibility, reported effectiveness, usability, patient-centred considerations, and staff considerations. CONCLUSIONS: Collaborative efforts of policy-makers, researchers, manufacturers, rehabilitation professionals, and older persons are needed to improve the design of technologies, develop appropriate funding and reimbursement strategies, and minimise barriers to their appropriate use to support independence and quality of life. Any strategies to improve upon barriers to prescribing smart technologies for older people should leverage the expertise of rehabilitation professionals operating at the interface between older people; their health/mobility; their families; and technology-based solutions.Implications for rehabilitationThere is growing interest in intelligent assistive technologies (IATs) in the rehabilitation of older adults, as well as barriers to their use in practice.Rehabilitation professionals can play a key role in enabling access to IATs by recommending or prescribing their use to their older clients. Strategies to address barriers to the use of IATs for older people should leverage the expertise of rehabilitation professionals operating at the interface between older people, their families, and technology-based solutions.Older people and their families require technical support to initiate and continue to use IATs for rehabilitation. While rehabilitation providers may be well-placed to offer this support, they may require time and organizational support to build and maintain expertise in the fast-advancing field of smart technologies for rehabilitation.Cost and usability are universal challenges across the types of smart technologies considered in this review. Participatory approaches to involving older people in the design and development of smart assistive technologies contribute to better usability of these technologies. Devices and interventions that leverage more readily available devices and lower-cost components may overcome cost barriers to accessibility.

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.

Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.

BACKGROUND: With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities. METHODS: A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as "partner" or "advisor". RESULTS: A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare. CONCLUSIONS: There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution.

The EMBOLDEN Co-design study: Partnering with older adults and communities to develop a community program to enhance mobility.

Context: Physical mobility and social participation are requisite for independence and quality of life as one ages. Barriers to mobility lead to social isolation, poor physical and mental health, all of which are precursors to frailty. To date, most mobility-enhancing interventions in older adults have been designed by researchers without citizen input and delivered in controlled settings; their translation to real-world contexts is often impractical and rarely occurs. Objectives: i) To engage older adults and community service providers to qualitatively explore priorities, needs, enablers and barriers to mobility and community participation faced by older adults, and ii) To co-design an evidence-informed, feasible, acceptable group intervention to support mobility and promote health among older adults facing health inequities. Study Design: Adapted experience-based co-design, conducted in collaboration with a Strategic Guiding Council comprised of older adults and service providers. Setting: Community-based. Population studied: Community-dwelling older adults (55+) and local health and social service providers. Outcome Measures: EMBOLDEN's Strategic Guiding Council and the research team collectively interpreted qualitative study findings, together with results of completed systematic reviews and an environmental scan, to determine priority design features of a community-based mobility-enhancing intervention to enable health and well-being in older adults in Hamilton, ON. Results: Eighteen diverse older adults and 16 service providers completed persona scenario interviews. These lived experience perspectives were analyzed, interpreted, and integrated with research and local evidence in the intervention co-design process. Priority design features for the intervention included duration, intensity, mode of delivery, characteristics of interventionists, and implementation strategies. Findings highlighted key strategies related to participant motivation, recruitment, and engagement, as well as important equity, diversity, and inclusion considerations. Conclusions: Partnering with diverse stakeholders is critical to identifying optimal design features of a community-based intervention to promote mobility. Ultimately, we aim to implement and evaluate a health promoting intervention that is sustainable, scalable, addresses health inequities, and effectively improves the lives of older adults.

Innovation processes for ageing-related health technologies.

Innovative technologies offer potential benefits for the health and care needs of an ageing population, but the processes by which these innovations are developed and implemented are not well understood. As part of a Canadian research network focused on ageing and technology, we explored how technologies currently being developed to support older adults and their caregivers fare through the processes of innovation. We conducted a multiple case study focused on development of four technology products. Interviews were conducted with project members (n = 8) during site visits to the locations of the four cases, as well as with other key informants (n = 12). Directed coding, guided by the Accelerating Diffusion of Proven Technologies for Older Adults (ADOPT) model was used to analyse the data. Findings illustrate the complexities of innovation processes, including the challenges in developing a business case as well as benefits of a collaborative network.

Seven lessons from the field: Research on transformation of health systems for older adults.

Research can play a key role in efforts to transform healthcare systems. Our group's long-standing research program has been aimed at understanding how to support greater integration and coordination of healthcare services for older adults with complex conditions. Drawing on this experience, we outline seven "lessons from the field" that highlight research-related challenges that may hinder health system transformation. These challenges relate to conducting research in a complex and constantly changing system; co-design approaches that are simultaneously deemed essential yet too ambiguous to fund; patient, family caregiver, and citizen engagement; limited funding for health systems research; and lack of use of research findings. We hope that these reflections will help to inform an ongoing conversation about how these challenges might be overcome.

Enabling health technology innovation in Canada: Barriers and facilitators in policy and regulatory processes.

OBJECTIVES: Health care innovation and technologies can improve patient outcomes, but policies and regulations established to protect the public interest may become barriers to improvement of health care delivery. We conducted a scoping review to identify policy and regulatory barriers to, and facilitators of, successful innovation and adoption of health technologies (excluding pharmaceutical and information technologies) in Canada. METHODS: The review followed Arksey and O'Malley's methodology to assess the breadth and depth of literature on this topic and drew upon published and grey literature from 2000-2016. Four reviewers independently screened citations for inclusion. RESULTS: Sixty- seven full- text documents were extracted to collect facilitators and barriers to health technology innovation and adoption. The extraction table was themed using content analysis, and reanalyzed, resulting in facilitators and barriers under six broad themes: development, assessment, implementation, Canadian policy context, partnerships and resources. CONCLUSION: This scoping review identified current barriers and highlights numerous facilitators to create a responsive regulatory and policy environment that encourages and supports effective co-creation of innovations to optimize patient and economic outcomes while emphasizing the importance of sustainability of health technologies.