Guest blog by: Stacey Daub, Board Member, The Change Foundation & VP, Strategy, Integration and Digital Health at North York General Hospital
I remember clearly the first time I met The Change Foundation’s Panorama Panel, which was a diverse group of 31 Ontarians who were using their healthcare experiences, both good and bad, to make the system better for everyone. This was in 2012, when the suggestion that we should, and could, shift power from healthcare providers and actively partner with patients to redesign health and social care was a truly trailblazing idea. Since that time, The Change Foundation has made patient and caregiver partnerships the core of their work. More importantly, they have shared their knowledge and evidence of impact far and wide, to the point that we have now moved from engagement to truly embedding patients as partners in co-design in many healthcare organizations.
Over time, I have worked with thousands of remarkable patient, caregiver and citizen leaders. Each person has had a unique influence on me. Recently I lost a very dear friend, colleague and world-class patient co-design extraordinaire, Eileen Dahl.
I met Eileen when I was the President & CEO of Headwaters Health Care Centre. She contacted me to share some feedback. She was spirited, direct and respectful, and she had one clear and unwavering intention: to make her community hospital even better. She managed, in one short phone call, to fire up many new and exciting ways to think about co-design and tap into the power of people. Since that time, she became one of my closest collaborators. We worked side-by-side on a variety of efforts to make things better for the patients, care providers and the community we served. Without exception, Eileen had a profound impact on everyone she met. She was smart, determined and never shy about flipping an idea or perspective on its head, just to make sure each idea was explored in every way possible.
In honour of Eileen’s legacy, I want to share three ways Eileen inspired me to think differently.
People are Multidimensional, Don’t Box Them In
Eileen refused to be labeled with a single descriptor. In fact, she felt that everyone – patients, caregivers, clinicians, administrators, volunteers – should be seen and treated as multidimensional, allowing their humanity and their full contributions to come through in all engagement and improvement work. She encouraged everyone to share their stories. After all, we’ve all been patients and caregivers at one time or another, and no matter our role we should each bring our life experience, wisdom and skills forward to find common purpose and make meaningful change together. In this regard, she definitely led by example. Eileen had many roles during her lifetime – a mom, a partner, a palliative caregiver, a professional caregiver, a colleague, a researcher, a survivor and patient. She truly used all of her lived experience to enrich everything she contributed to.
One of the things that Eileen found most frustrating, was when people viewed patients and caregivers, individually and collectively, through a lens of vulnerability, feeling this weakened, rather than empowered, them. She didn’t like it when people challenged the self determination of patients. If she found out that people were trying to protect her by not inviting her to participate in yet another community project, she would get very upset. In her words, “I’m an adult, ask me to participate and I will decide if I can.”
She clearly understood that vulnerability resides in all of us, and when we find ways to acknowledge and explore our vulnerabilities together, incredibly powerful human connections are made. Many times, she felt the healthcare provider in the room was more vulnerable than she was. When she opened her eyes to this possibility, she saw things in a different light. This enabled her to have different conversations that supported them as both human beings and health care providers.
Resiliency as a Superpower
To Eileen, resiliency was a super power. She worked hard to developed it and encouraged and supported others in doing the same. When she was diagnosed with metastatic bone cancer about four years ago, her will to live, thrive and contribute gave her a powerful shield against the rage of her illness. Shortly after her diagnosis, Eileen set up a peer support network for others with the same diagnosis. It was wildly popular and brought together people from around the world. She became a powerful crusader for better palliative care, helping Dufferin County develop new models of care. With her young daughter in mind, she even supported schools to have new and healthy conversations about death and dying.
In the last year of her life, she provided inspiring leadership to the Hills of Headwaters Collaborative which was recently selected as one of the first Ontario Health Teams. Despite her worsening health condition, in September 2019 she was a speaker on an international panel on integrated care at Longwoods Breakfast with the Chiefs.
I had the privilege of visiting with her just two days before she died. Despite her advanced illness, she spent most of our time asking me about how I was doing. How was my new role at North York General Hospital? What was exciting? What was challenging? Her desire to connect with me as a fellow human gave her remarkable strength, and I believe happiness, in that moment.
A colleague described Eileen as a fearless and unapologetic warrior for better. I still feel a terrible sense of loss, but I also take solace knowing that if Eileen were beside me right now, she would tell me to use this experience to gain wisdom and grow. I know I will bring a piece of her wherever I am.
I want to say a warm thank you to her family – Brent, Abbey, Gabe and Maddy – for sharing Eileen with the rest of the world. Her legacy as a game changer lives on.
A snapshot of Eileen’s impact:
thriveanyway. A tribute from Eileen’s husband Brent
Just breathe: Learning to live with bone mets. Written by Eileen
Innovation. Inspiration. Integration: Co-designing for health and well-being with individuals and communities. A Longwoods Breakfast with the Chiefs event. Eileen was a member of the panel.