Research Brief: Older people as research partners – a systematic review of implementation and impact

Published: June 14, 2021

Patient and public partners are most likely to be engaged in the execution of research and least likely to be engaged in the preparatory stages of research, say experts from the MIRA | Collaborative for Health & Aging.

These findings are included in a research brief of a systematic review of the literature on how, when, and with what impact older adult research partners contribute to health research.

The research brief entitled Older people as research partners: a systematic review of implementation and impact provides a summary of key points, what the research is about, how the research was carried out, results and recommendations.

The review included a search of five databases of published literature from 2000 to 2019 to find English articles about engaging older adults as partners in health research in any care setting (e.g., acute care, long-term care, community). Most of the 33 included studies that were carried out in the community setting.

This research brief and systematic review were developed by the Collaborative’s patient engagement group of experts, led by Drs. Rebecca Ganann and Julia Abelson. Their aim is to advance the science of patient engagement to ensure representation of patient needs, perspectives, and aspirations at all levels of health care decision-making.

The MIRA | Collaborative for Health and Aging is co-led by Maureen Markle-Reid, Co-Scientific Director of the Aging, Community and Health Research Unit (ACHRU) and Parminder Raina, Scientific Director of the McMaster Institute for Research on Aging (MIRA).

To access the research brief, click here.

MIRA | Collaborative Webinar Series: Engaging and partnering with older adults in the MIRA Collaborative

Join us Wednesday, June 2 from 11 a.m. – 12 p.m. ET for the second MIRA | Collaborative for Health & Aging webinar, “Engaging and partnering with older adults in the MIRA Collaborative: implementation and evaluation.” Click here to register.

During this webinar, Drs. Rebecca Ganann, Julia Abelson, Maggie MacNeil and patient partner Penelope Petrie will help attendees gain an understanding of the background of patient-oriented research; learn and discuss principles that guide the engagement of older people; and gain insight into the results of a systematic review of the literature on the implementation and impact of patient or public involvement in health research and how patient partners contributed to that review.

New learning module aims to advance patient-oriented research in aging

Published: April 13, 2021

Health and aging research experts at the MIRA | Collaborative for Health & Aging have created an online learning module to help researchers develop and expand projects into successful patient-centered innovations. A one-minute trailer provides a quick overview that outlines the content of the learning module.

The Scale and Spread of Health Interventions Learning Module is for researchers who want to bridge the gap between aging research and clinical practice. It provides researchers with the tools to successfully plan and scale-up effective health-care programs.

It is designed to help researchers gain an understanding of how to:

  • assess scalability;
  • develop a four step scale-up plan;
  • implement a scale-up plan;
  • learn from success of the Aging, Community and Health Research Unit Community Partnership Program and Health Tapestry projects.

Funded by the Ontario SPOR SUPPORT Unit (OSSU), the Collaborative was formed in 2019 by the McMaster Institute for Research on Aging (MIRA) and the McMaster School of Nursing’s Aging, Community and Health Research Unit (ACHRU). Parminder Raina and Maureen Markle-Reid, who are scientific directors of MIRA and ACHRU respectively, co-lead the Collaborative with Michael Wilson, Assistant Director of the McMaster Health Forum.

This new learning module was developed by the Collaborative’s patient-centred innovation group of experts, led by Drs. Maureen Markle-Reid and Jenny Ploeg, Scientific Directors of the ACHRU and Drs. Kathryn Fisher and Larkin Lamarche. Their aim is to support the co-design, implementation, evaluation, scale and spread of integrated, patient-centred innovations.

To watch the one-minute module trailer, click here.

To access the learning module, click here.

MIRA | Collaborative for Health & Aging webinar series: Pivoting a large-scale aging research initiative due to the COVID-19 pandemic

Join us Friday, February 26 from 12 p.m. – 1 p.m. ET for the first MIRA | Collaborative for Health & Aging webinar, “Pivoting a large-scale aging research initiative due to the COVID-19 pandemic.” Click here to register.

During this webinar, Dr. Brenda Vrkljan and Dr. Marla Beauchamp will describe the early steps and strategies implemented by their multidisciplinary research team to pivot their large-scale aging and mobility study in the wake of COVID-19 and the corresponding health measures in place. Using examples from their work, they will highlight how partnering with older adults and other stakeholders can ensure the research conducted is relevant, meaningful, and scientifically impactful – even in these uncertain times. This webinar will also invite attendees to share their tips and strategies for conducting research during the pandemic.

The overall aims of the MIRA | Collaborative for Health & Aging webinar series, led by Dr. Vrkljan, are to highlight the research on aging at McMaster University across several health research topic areas and disciplines, with a focus on patient engagement tools and resources and the impacts of patient-oriented research in aging. The webinar series is aimed at researchers and trainees, including other OSSU Centres and SPOR-funded entities, researchers from other institutions, older adult research partners, community partners, knowledge users and stakeholders interested in research in aging and patient-oriented research in aging.

Objectives of the webinar series are to:

  • Enhance the awareness, knowledge, and skills of diverse audiences (e.g., researchers, community partners involved in research, older adult research partners, trainees, health decision-makers, other OSSU Centres) to conduct patient-oriented research in aging.
  • Facilitate partnerships and collaborations across diverse audiences and showcase ongoing opportunities for multidisciplinary research and engagement opportunities in aging.
  • Simulate a virtual panel discussion and create an interactive online discussion for diverse audiences to share their perspectives, successes, and challenges as well as key results in all aspects of their research in aging, implementation of research in aging, and patient engagement tools and frameworks on research in aging.
  • Foster knowledge generation, exchange, and translation across multiple research areas in aging and for diverse audiences, with a focus on capacity building, patient-oriented research, and issues in equity, diversity and inclusion.

Click here for more details on this webinar series.

McMaster receives $1M to lead COVID-19 evidence network

Published: January 13, 2021

To ensure decision-makers have access to the best COVID-19 science in a timely manner, the federal government is investing $1 million to support the COVID-19 Evidence Network to support Decision-makers (COVID-END) hosted at McMaster University.

The network, led by MIRA Collaborative member, John Lavis will bring together experts to collaborate and rapidly synthesize the best available evidence across the full breadth of Canada’s COVID-19 pandemic response.

By providing timely access to the latest research on public health measures, clinical management, health-system arrangements, and economic and social impacts, policymakers will better understand the impact that these measures have on Canadians’ health and safety.

In announcing the grant, federal Minister of Health Patty Hajdu, said: “Our response to COVID-19 has always been informed by the latest science and evidence, which we get from our internationally-respected Canadian researchers. 

“Through the COVID-19 Evidence Network, our best and brightest will work with provincial, national and international partners so that decision-makers get the information we need to keep Canadians safe throughout the next phase of this pandemic. Through this network, we will ensure that Canada continues to be a global leader in COVID-19 research.”

Lavis, who is also a McMaster professor of health research methods, evidence, and impact, said the network will work with Canadian and international partners to better develop and coordinate groundbreaking research on COVID-19, while reducing the duplication of efforts so experts can focus on the latest research and developments to keep Canadians safe.

“The COVID-19 Evidence Network will use a highly collaborative approach to rapidly synthesizing the best available evidence about key COVID-19 topics – in timelines ranging from four hours to 10 days – in response to requests from decision-makers,” said Lavis.

“The network will identify emergent issues where synthesized evidence is needed as well as profile the best available evidence syntheses on all key COVID-19 decisions. We will work with both domestic and international partners to reduce duplication and enhance coordination in the COVID-19 evidence response.”

The Canadian government is supporting the COVID-19 Evidence Network through the Canadian Institutes of Health Research (CIHR) so they may provide the latest evidence to decision-makers at the federal, provincial, and territorial levels.

Formation of the network also recognizes that while the arrival of vaccines brings hope for the eventual ending of the pandemic, there are still critical knowledge gaps that must be filled to further support ongoing decision-making as we respond to this virus to keep Canadians safe.

“The COVID-19 Evidence Network will focus on synthesizing the evidence we already have and identifying evidence gaps that exist,” said Michael Strong, CIHR president.

“The network will use a highly collaborative approach to rapidly synthesizing evidence for improved decision-making. To ensure sensitivity to how COVID-19 and COVID-19 responses can affect different groups in different ways, the network will apply principles of equity, diversity and inclusion in all of its work.”

Co-leads with Lavis on the network are Jeremy Grimshaw from the Ottawa Hospital Research Institute, Andrea Tricco of the SPOR Evidence Alliance, which is based at St. Michael’s Hospital of Unity Health Toronto, and Nancy Santesso of Cochrane Canada, based at McMaster University. Lavis also holds the Canada Research Chair in Evidence-informed Health Systems.

The network will build on nine months of experiences in preparing COVID-19 rapid evidence profiles and on many years of experience with the SPOR Evidence Alliance and Cochrane Canada in preparing rapid evidence syntheses, said Lavis.

The project will maintain a publicly available inventory of the best evidence syntheses for COVID-19 decisions to ensure that Canadian decision-makers have the most updated science available when needed, and will establish a Canadian panel to complement its existing global horizon-scanning panel that monitors emerging issues where evidence syntheses are needed.

This article was first published by the Faculty of Health Sciences, McMaster University. Read the original article

Pivoting with older adults during COVID-19

Published: September 9, 2020

The COVID-19 pandemic has upended plans, closed businesses, forced people into isolation and turned society upside down. For seniors, the impact has been even more marked, with increased vulnerability both to the disease, and to the effects of isolation as a result of public health guidance to socially distance.  

The MIRA | Collaborative on Health & Aging, an OSSU Research Centre focused on supporting healthy aging and encouraging patient partnership in research, has pivoted to catch the curve balls thrown by the pandemic.

From creating toolkits for patients and caregivers to offering webinars on patient partnership, virtual care and more, the MIRA Collaborative team members have deftly adapted to the challenge of COVID-19 and its effect on research projects.

A major research project designed to test hospital-to-home transitional care for older stroke patients from a hospital-based stroke rehabilitation clinic was put on hold as a result of the COVID-19 pandemic. The goal of this CIHR-funded research project is to improve the quality of hospital-to-home transitions for older stroke patients. The program will be delivered by an interprofessional team of healthcare providers and involves regular in-home visits, monthly interprofessional team case conferences, system navigation support, and use of an m-health app to facilitate communication among the team.

Partners at Hamilton Health Sciences and Hotel Dieu Shaver Hospital in St. Catharine’s were onboard. But when the pandemic hit, outpatient departments were closed, staff were re-deployed, and the initiation of this research was temporarily delayed.

“The bottom line was we were all set to go and COVID came along,” says Dr. Maureen-Markle Reid, Scientific Co-lead, MIRA | Collaborative on Health & Aging at McMaster University in Hamilton, and principal investigator of the study. “We have two patient research partners with stroke experience – one had a stroke two to three years ago, another last year. They were helping with the study, helping with data collection, all aspects, including recruitment and consent.”

The new program being tested by the research team now involves a hybrid approach, with guidelines to determine who will receive at home visits and who will have virtual visits. Patient and caregiver research partners will continue to work with the researchers to adapt the research to the new reality.

“We need to adjust to this new realism and deliver our program in a different way,” says Dr. Markle-Reid. “We are still planning to do visits, use the app and hold case conferences but we’re not sure if it will be in person or virtual.”

Reduced physical activity and the inability to carry out daily activities are risk factors for frailty, hospitalizations, and premature death. These challenges are compounded during the COVID-19 pandemic for older adults living in areas with high inequities such as lower income and lack of community supports. The EMBOLDEN trial, co-led by Dr. Rebecca Ganann and funded by the McMaster Institute for Research on Aging (MIRA) is a research initiative to promote mobility and social connections for older adults living in areas with high health inequities. The research team is working with citizen partners, health and social service providers to develop an intervention that will enhance mobility through nutrition, social participation, community activity, recreation and more.

“With COVID, we have had to shift design of the study as the local landscape of services has changed – some programs are no longer available so we need to change the intervention,” says Dr. Rebecca Ganann, a researcher at MIRA and an associate professor at McMaster University. “What we were envisioning will shift: we’ll move to virtual data collection.”

“All of us have had our mobility impacted by COVID,” she says. “Many people are getting out less often, feeling less connected so there is an opportunity to make a big impact in the community. Even if we could go forward with a group-based approach, will people feel comfortable? We need to be agile to adapt.”

Access to technology is now essential, but also another hurdle for the researchers and patient partners to overcome.

“Because we are dealing with people with social inequities, we are grappling with the digital divide – some people don’t have digital access so we are working with citizen partners to plan how to best address this,” says Dr. Ganann.

The research team has linked with a broad range of community and social service partners in Hamilton, such as public health, city housing, transportation, parks and recreation, United Way, the YMCA/YWCAs and other community agencies to increase access to services and social connections. These partners helped to recruit patient partners, and to ensure engagement of diverse patient partners, the team conducted outreach to priority neighbourhoods.

In engaging older vulnerable adults in research, it is critical to understand their unique circumstances and perspectives.

“We need to understand the lived reality of people living with several health conditions, who have lots of appointments and challenges,” says Dr. Ganann. “Some like in-person meetings, others want to call in if they can’t get away because of caregiving. Having a menu of options of how to get engaged and choose level of engagement is really important.”

Despite the COVID-19 pandemic, patient engagement in research with and for older adults continues, with a few tweaks, at this leading research institution.

Resources for patients and caregivers

To help patients and caregivers, the MIRA Collaborative also developed a range of tools and resources for patients and caregivers, including the DIVERT-CARE COVID toolkit to identify vulnerable home care patients and the COVID Caregiver Back-Up Plan tool for caregivers to communicate information about caring for their loved ones, especially when regular caregiving schedules have been interrupted or changed.

This article was first published on the OSSU. Read the original article here.

EMBOLDEN Team Launches its First Co-Design Event in Hamilton

Published: ​February 11, 2020 

Being social and active can help maintain quality of life​ in those aged 55 years and older. Many older adults, however, experience mobility barriers that keep them from accessing the community programs designed to support their social participation and, ultimately, their health and wellness.

EMBOLDEN, a Labarge-funded research initiative, wants to help older adults overcome those barriers through improved nutrition, physical activity and social connections in key Hamilton neighbourhoods. The project uses co-design principles to understand participants’ needs and goals, and leverages community partnerships to ensure the intervention reaches and fits the population. Older adults and community service providers, therefore, are critical partners in this work.

On December 9, 2019, the EMBOLDEN team held their Strategic Guiding Council launch event, effectively initiating the co-design portion of their research. Building on existing best practices and local evidence, researchers, together with local older adults and community service providers, began discussions around developing an innovative community-based program with the goal of promoting health, mobility, inclusion, and equity among the target group.

Members of the research team, which included Rebecca GanannRuta ValaitisMaureen Markle-Reid, and Sarah Neil-Sztramko from McMaster’s School of Nursing, Elizabeth Alvarez from the Department of Health Research Methodology, Evidence and Impact, and Stuart Phillips from the Department of Kinesiology, were joined by stakeholders and community members, including representatives from the City of Hamilton, Hamilton Council on Aging, United Way, St. Matthew’s House, Hamilton Public Health and others.

The event explored participants’ interests, goals, and expectations and allowed the project leads to share progress to date, including an environmental scan detailing the services and characteristics of the four Hamilton neighbourhood clusters (Dundurn/Strathcona, Durand/Corktown/Stinson, Burkholme/Macassa, Corman/Kentley/Riverdale West) that will serve as the study’s intervention sites.

A key outcome of this event was to partner with and learn from the group’s rich expertise living and working in Hamilton, start to gather participants’ views on the priority features to include in the EMBOLDEN study, the barriers to consider, and the voices that should be invited to contribute.

“The event marked the official start of ongoing partnerships over the next three years to collaboratively design and test novel approaches to improving the lives of aging Hamiltonians,” said Ganann. “It was a highly engaged room with a strong commitment to inclusive, supportive environments for older adults.”

New Provincial Research Centre Brings Expertise in Health and Aging

Published: June 6, 2019

Older adults range in age from 65 to 105 and represent widely varying health and social needs, yet this growing cohort is often grouped in one category. Two established research platforms of McMaster University aim to address the diverse needs of Ontario’s older adults by supporting and advancing patient and caregiver-partnered research in aging.

The McMaster Institute for Research on Aging (MIRA) and the McMaster School of Nursing’s Aging, Community and Health Research Unit (ACHRU) have formed the newest research centre in the Ontario SPOR SUPPORT Unit (OSSU) network.

This is a network of 15 health research centres across the province that provide scientific knowledge and support high quality patient-partnered research with the goal of improving health and the health system.

The new Centre, called the MIRA | Collaborative for Health & Aging, has received $300,000 from OSSU to establish its activities over the course of one year. Parminder Raina and Maureen Markle-Reid, who are scientific directors of MIRA and ACHRU respectively, will co-lead the centre.

“We are looking forward to working with stakeholders from across Ontario to develop a robust research agenda that engages patients and their families and improves the health and well-being of older people,” said Markle-Reid, who is also a professor in nursing at McMaster. She holds a Tier 2 Canada Research Chair (CRC) in Person-Centered Interventions for Older Adults with Multimorbidity and their Family Caregivers.

Older adults make up a significant portion of Canada’s population and are extremely diverse in health and social expectations. “The focus of the collaborative is on supporting older adults in our research, knowing that there is no typical older person. In the same way you wouldn’t compare a 10-year-old to a 30-year-old, you cannot compare a 65-year-old to a 95-year-old.” said Raina, who stresses this factor as an important consideration both when conducting and translating research.

Raina is a professor of health research methods, evidence and impact at McMaster and lead investigator of the Canadian Longitudinal Study on Aging (CLSA).

He added that developing science-based knowledge and solutions that promote healthy and productive aging and strengthen patient-research-policy connections are driving forces behind the potential success of the centre. Researchers and student trainees, as well as patients, decision makers and clinicians, from across the province will benefit from the centre’s expertise. 

“The addition of the MIRA | Collaborative for Health & Aging to OSSU’s network of research centres will fill a gap in aging expertise for patient-oriented researchers in Ontario,” says Vasanthi Srinivasan, OSSU executive director. “We look forward to working with the collaborative to champion patient-oriented research in Ontario, with a special focus on addressing the unique needs of older patients.”

Community partner Gail Heald-Taylor, both a caregiver and older adult herself, said: “Patients and their caregivers are getting older, living longer and sometimes living sicker. Being a community partner from the perspective of an aging caregiver gives me a sense that my role is valued and my lived experience is validated.”

Specifically, the collaborative will focus on five core objectives:

  1. Advancing the science of patient engagement to ensure representation of patient needs, perspectives and aspirations at all levels of health care decision-making;
  2. Supporting the implementation, evaluation, scale and spread of patient-centred innovations;
  3. Supporting access to key data holdings and creating frameworks to share relevant data in a timely manner;
  4. Promoting collaborations and partnerships which facilitate, connect and integrate activities across the province and builds capacity for Ontario to champion evidence- and value-informed decisions for health care improvements;
  5. Creating, enhancing and developing the capacity of system stakeholders (patients, researchers, clinicians, caregivers, policymakers) to engage in patient-oriented research.

The collaborative will have access to more than 100 researchers from across all six McMaster Faculties who are exploring a range of topics related to older adults, their caregivers and communities, such as bone health, mental health, social isolation, living with multiple chronic conditions, aging in place, and more.