“Lived experience is a huge teacher”

The importance of including older adults in health research and policy

How do we help older adults age in place? What are the concerns of this demographic? How can we ensure equity? How do we improve the health system to better meet their needs?

That’s the focus of the McMaster Collaborative for Health and Aging, the only OSSU research centre devoted solely to older adults. It brings a unique lens, with the perspective that older adults should be front and centre in health research that addresses their needs.

“There is no reason why an older adult cannot be part of a research team,” says Michael Kirk, a patient and caregiver partner who brings extensive lived experience to research projects at the Collaborative. “They bring expertise that is important. Lived experience is a huge teacher.”

Older adult partner and caregiver Michael Kirk (centre) with McMaster Collaborative’s Managing Director, Dr. Soo Chan Carusone (left), and another older adult partner Donna Weldon.

Since he was diagnosed with HIV in 1994, the 76-year-old has accrued significant experience with the health system, moving through many drug therapies for HIV, dealing with emerging personal health conditions and as a caregiver for his partner. His health advocacy, which stretches back more than 20 years, was accelerated after he retired and became involved with the AIDS network. This network partnered with the physiotherapy program at McMaster University in Hamilton, Ontario where actual patients interacted with students in such programs – he was one – and he was hooked.

Mike’s involvement started about 18 months ago, when the opportunity arose to be a patient partner with the Collaborative. He realized he could make a difference in research projects. His 10 years’ experience at Ontario Trillium Foundation, a granting agency, has been an asset to research teams.

“I’ve been very proactive since 1994 in contributing to the knowledge base so those who follow get better treatment and researchers ask better questions,” says Mike. “I’m aging and my partner is too. He had a minor stroke and epilepsy and now Parkinson’s; we try to juggle these every day and they’re all so different. I want to give back to researchers to help inform them on questions to ask to provide better care to people, and to help households and family units.”

In addition to engaging older adults and caregivers as research partners, the McMaster Collaborative for Health and Aging emphasizes mentorship and skill development for young researchers who learn how to meaningfully involve older adults and caregivers in their studies.

“The work we do is about informing and transforming the health system. The involvement of older adults in health research is critical,” says Dr. Brenda Vrkljan, a professor of occupational therapy who co-leads the Collaborative with Dr. Rebecca Ganann, an associate professor of nursing. “At the core of health research and policy is people – we work with trainees to get them to understand the role of older adults as partners in their research.”

Respect for older adults is woven into the Collaborative’s work.

“What’s essential to what we do is to recognize the expertise and value that our older adult partners have – they bring much expertise, rich lived experience that can shape individual programs and research,” says Dr. Rebecca Ganann who is also an early career researcher.

At the policy forum hosted by the McMaster Collaborative on March 13, 2023, the EMBOLDEN project was highlighted as an example of how researchers can partner with older adults to co-design, execute and monitor intervention research. The EMBOLDEN team co-designed a new integrated health and social care program aimed at improving the mobility, nutrition, social interaction, and community involvement of elders living in high-risk, urban areas. The project targets older people who may face barriers, such as cost, mobility, equity issues and isolation, to access local community programs and remove barriers. Other areas highlighted at this forum were diabetes community prevention program to support older adults and caregivers with chronic disease self-management, a transitional care intervention for older people living with stroke, as well as innovative palliative care models.

A top priority for most older adults is to live in the community as long as possible. However, the question remains as to how the health system can adapt to support older adults as they age? The Collaborative’s older adult partners and researchers agree that we need to think differently, expand access to family doctors and homecare, create more team-based care, respect older adults’ diverse needs and circumstances. We need to ask older adults what they think is important, consider their suggestions when undertaking research and involve them in this work in an ongoing basis.

“We’re challenged with the idea of thinking of what is important to us as the end consumer of the health care product,” says Mike. “I’m not interested in living the longest life I can, but I am interested in living the best life I can in comfort in a family unit. Not isolated. I want to live in my own home and my partner does too as long as we can. We need to think differently about how we deliver health care to enable people to live at home. Healthy people and happy people are more productive and will use less parts of the [health] system.”

“This will be a huge issue with the shortage of primary care providers,” says Dr. Ganann. “The challenge is that older people are facing attachment issues to a primary care provider if their long-time doctor has retired. Many have chronic conditions. That issue will be the driver. We need to leverage strengths of interdisciplinary teams to deal with this. Some issues are related to the social determinants of health and affect ability to manage their health conditions.”

Is there a silver bullet?

“The secrets of healthy ageing aren’t so secret,” says Dr. Vrkljan. “This isn’t magic. There’s existing and emerging evidence that must be harnessed. We need to combine existing evidence with what we learn from the experience of older adults and carry that forward into both the health system and policy.”

How do we help an ageing population age well? What about equity?

Michael Kirk, a member of the Older Adult Partner group of the McMaster Collaborative for Health and Aging

  • “The biggest way is simply to ask the end users – people as they age – what do you see in your future and how would you feel most comfortable? What did you see in your past that made you less comfortable? Being part of a system, being heard is hugely important. Ask and listen. One of the biggest contributors to making that successful is things need to be in plain language. For example, someone newly diagnosed with HIV won’t understand why viral loads are important. People are super worried and listening to clinical language should be in plain language and context.”

Brenda Vrkljan, Professor of Occupational Therapy & Co-Scientific Lead of the McMaster Collaborative for Health and Aging

  • “That’s a challenging question. I think something that’s really come to the forefront is recognizing and understanding EDI [equity, diversity and inclusion]. We need to recognize the heterogeneity of the ageing population and the notion of Canada being a cultural mosaic. A person is more than their diagnosis and we need to recognize that person. This heterogeneity needs to be worked into the lexicon of healthy aging. While we ([researchers] are often happy to have older adults volunteer to participate in research studies, we must create more inclusive opportunities so their voices are at the table much earlier when the study is being considered and designed so their needs inform innovations within the health system.”

Rebecca Ganann, Associate Professor of Nursing & Co-Scientific Lead of the McMaster Collaborative for Health and Aging

  • “When we think of EDI, we need to recognize the multiple marginalized identities that people may be facing. We have work to do to address ageism, racism, and those economically marginalized. People don’t want to feel they’re at their expiry date, but they want to be respected. They really embrace intergenerational opportunities and learning. People want to contribute, give back their lived experience to make the health system better for all.”