Bridging the divide: supporting and mentoring trainees to conceptualize, plan, and integrate engagement of people with lived experience in health research.

Health researchers are encouraged by governments, funders, and journals to conduct research in partnership with people with lived experience. However, conducting research with authentic engagement and partnership with those who are experts by experience, but may not have research methods training, requires resources and specialized skills. The McMaster Collaborative for Health and Aging developed a fellowship program for trainees that builds their capacity to conduct research in partnership with older adults with relevant lived experience. We share this case example, with its successes and challenges, to encourage creative reformation of traditional research training.The Collaborative used an iterative design process, involving researchers, trainees and older adult and caregiver partners, who, together, developed a fellowship program for trainees that provides support and mentorship to plan and conduct health research in partnership with people with lived experience.Since 2022, the Partnership in Research Fellowship has been offered biannually. The application process was purposefully designed to be both constructive and supportive. Opportunities for one-on-one consultations; key resources, including a guide for developing a plan to involve people with relevant lived experience; and feedback from older adult and researcher reviewers are provided to all applicants. Successful trainees engage with older adult and caregiver partners from the Collaborative to advance and enhance a range of skills from facilitating partner meetings to forming advisory committees. Trainees are awarded $1500 CAD to foster reciprocal partnerships. Ten graduate students from various disciplines have participated. Trainees reported positive impacts on their knowledge, comfort, and approach to partnered research. However, the time required for undertaking partnered research activities and involving diverse partners remain obstacles to meaningful engagement.Partnering with people with lived experience in the design of educational programs embeds the principles of partnership and can increase the value and reward for all involved. We share the Partnership in Research Fellowship as a case example to inspire new and transformative approaches in research training and mentorship that will move the field forward from engagement theory to meaningful enactment.

Health researchers are encouraged by governments, funders, and journals to conduct research in partnership with individuals with relevant health conditions or experience. However, conducting research with individuals who are experts by experience, but may not have research training, requires resources and specialized skills. The McMaster Collaborative for Health and Aging developed a fellowship program to support and mentor trainees to conduct their research in partnership with people with lived experience and turn engagement theory into action.The Collaborative involved researchers, trainees, and older adults in the development of the fellowship program. Since 2022, the Partnership in Research Fellowship has been offered twice a year. The application process was designed to be both supportive and informative. Opportunities for one-on-one consultations; key resources, including guiding questions to consider when planning to involve people with relevant lived experience; and feedback from older adults and researchers, are provided to all applicants. Each trainee receives $1500 CAD to support building strong, two-way partnerships. Since the fellowship's launch, 10 graduate students from different fields have participated. Trainees reported improvements in their knowledge and comfort to partner with people with lived experience in research. However, challenges, such as the extra time needed for conducting partnered research as well as locating and involving those from diverse backgrounds, were identified.Involving people with lived experience in the design of research training incorporates partnership principles and may enhance the benefits and satisfaction for everyone involved. We share the Partnership in Research Fellowship, as an example, to inspire new approaches in research training and mentorship.

Public Engagement in Health Policy-Making for Older Adults: A Systematic Search and Scoping Review.

INTRODUCTION: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults. METHODS: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. RESULTS: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. CONCLUSION: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. PATIENT OR PUBLIC CONTRIBUTION: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.

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.

Effectiveness of system navigation programs linking primary care with community-based health and social services: a systematic review.

BACKGROUND: Fragmented delivery of health and social services can impact access to high-quality, person-centred care. The goal of system navigation is to reduce barriers to healthcare access and improve the quality of care. However, the effectiveness of system navigation remains largely unknown. This systematic review aims to identify the effectiveness of system navigation programs linking primary care with community-based health and social services to improve patient, caregiver, and health system outcomes. METHODS: Building on a previous scoping review, PsychInfo, EMBASE, CINAHL, MEDLINE, and Cochrane Clinical Trials Registry were searched for intervention studies published between January 2013 and August 2020. Eligible studies included system navigation or social prescription programs for adults, based in primary care settings. Two independent reviewers completed study selection, critical appraisal, and data extraction. RESULTS: Twenty-one studies were included; studies had generally low to moderate risk of bias. System navigation models were lay person-led (n = 10), health professional-led (n = 4), team-based (n = 6), or self-navigation with lay support as needed (n = 1). Evidence from three studies (low risk of bias) suggests that team-based system navigation may result in slightly more appropriate health service utilization compared to baseline or usual care. Evidence from four studies (moderate risk of bias) suggests that either lay person-led or health professional-led system navigation models may improve patient experiences with quality of care compared to usual care. It is unclear whether system navigation models may improve patient-related outcomes (e.g., health-related quality of life, health behaviours). The evidence is very uncertain about the effect of system navigation programs on caregiver, cost-related, or social care outcomes. CONCLUSIONS: There is variation in findings across system navigation models linking primary care with community-based health and social services. Team-based system navigation may result in slight improvements in health service utilization. Further research is needed to determine the effects on caregiver and cost-related outcomes.

Implementation of the Community Assets Supporting Transitions (CAST) transitional care intervention for older adults with multimorbidity and depressive symptoms: A qualitative descriptive study.

BACKGROUND: Older adults with multimorbidity experience frequent care transitions, particularly from hospital to home, which are often poorly coordinated and fragmented. We conducted a pragmatic randomized controlled trial to test the implementation and effectiveness of Community Assets Supporting Transitions (CAST), an evidence-informed nurse-led intervention to support older adults with multimorbidity and depressive symptoms with the aim of improving health outcomes and enhancing transitions from hospital to home. This trial was conducted in three sites, representing suburban/rural and urban communities, within two health regions in Ontario, Canada. PURPOSE: This paper reports on facilitators and barriers to implementing CAST. METHODS: Data collection and analysis were guided by the Consolidated Framework for Implementation Research framework. Data were collected through study documents and individual and group interviews conducted with Care Transition Coordinators and members from local Community Advisory Boards. Study documents included minutes of meetings with research team members, study partners, Community Advisory Boards, and Care Transition Coordinators. Data were analyzed using content analysis. FINDINGS: Intervention implementation was facilitated by: (a) engaging the community to gain buy-in and adapt CAST to the local community contest; (b) planning, training, and research meetings; (c) facilitating engagement, building relationships, and collaborating with local partners; (d) ensuring availability of support and resources for Care Transition Coordinators; and (e) tailoring of the intervention to individual client (i.e., older adult) needs and preferences. Implementation barriers included: (a) difficulties recruiting and retaining intervention staff; (b) difficulties engaging older adults in the intervention; (c) balancing tailoring the intervention with delivering the core intervention components; and (c) Care Transition Coordinators' challenges in engaging providers within clients' circles of care. CONCLUSION: This research enhances our understanding of the importance of considering intervention characteristics, the context within which the intervention is being implemented, and the processes required for implementing transitional care intervention for complex older adults.

Effectiveness of a nurse-led hospital-to-home transitional care intervention for older adults with multimorbidity and depressive symptoms: A pragmatic randomized controlled trial.

OBJECTIVE: To evaluate the effectiveness of a nurse-led hospital-to-home transitional care intervention versus usual care on mental functioning (primary outcome), physical functioning, depressive symptoms, anxiety, perceived social support, patient experience, and health service use costs in older adults with multimorbidity (≥ 2 comorbidities) and depressive symptoms. DESIGN AND SETTING: Pragmatic multi-site randomized controlled trial conducted in three communities in Ontario, Canada. Participants were allocated into two groups of intervention and usual care (control). PARTICIPANTS: 127 older adults (≥ 65 years) discharged from hospital to the community with multimorbidity and depressive symptoms. INTERVENTION: This evidence-based, patient-centred intervention consisted of individually tailored care delivery by a Registered Nurse comprising in-home visits, telephone follow-up and system navigation support over 6-months. OUTCOME MEASURES: The primary outcome was the change in mental functioning, from baseline to 6-months. Secondary outcomes were the change in physical functioning, depressive symptoms, anxiety, perceived social support, patient experience, and health service use cost, from baseline to 6-months. Intention-to-treat analysis was performed using ANCOVA modeling. RESULTS: Of 127 enrolled participants (63-intervention, 64-control), 85% had six or more chronic conditions. 28 participants were lost to follow-up, leaving 99 (47 -intervention, 52-control) participants for the complete case analysis. No significant group differences were seen for the baseline to six-month change in mental functioning or other secondary outcomes. Older adults in the intervention group reported receiving more information about health and social services (p = 0.03) compared with the usual care group. CONCLUSIONS: Although no significant group differences were seen for the primary or secondary outcomes, the intervention resulted in improvements in one aspect of patient experience (information about health and social services). The study sample fell below the target sample (enrolled 127, targeted 216), which can account for the non-significant findings. Further research on the impact of the intervention and factors that contribute to the results is recommended. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT03157999.