Maggie Keresteci is a caregiver to her sibling who lives with a life altering disease and is committed to advocating for solutions that will improve the lives of Canadian patients and their caregivers.
"Coming together is a beginning;
keeping together is progress;
working together is success."
These words of Henry Ford, that bastion of business innovation, have been taking up space in my mind for the last few weeks, as I have contemplated the emerging world of patient and caregiver partnership in Canada. With the emergence of a “new community-based model of care introduced in Ontario via Ontario Health Teams”, we have a window of opportunity to take leadership in new partnership models that move us beyond tokenism, towards enhanced healthcare delivery, individually in our communities and collectively as a system.
The term patient and caregiver partnership is new, evolving over time from the historic patient engagement language. The forward movement of that evolution is thanks to the hard work and persistence of some fearless patient advocate leaders who worked tirelessly to raise awareness. What began as an effort to highlight the importance of engaging patients expanded to include the vital role of a patient’s family and caregivers. This group of patient and caregiver pioneers have come together in a way that exemplifies true peer support, challenges our individual and collective thinking and inspires me daily.
Coming Together is a beginning
The patient and caregiver advocacy movement began with a “coming together”, a meeting of those with different perspectives, an opening of communication channels not previously available. It was hard and uncomfortable work for everyone. Physicians, nurses, and other health care providers heard our patient and caregiver stories, listened to the pain seeping through the words and in the pauses of our narratives. Patients and caregivers with lived experience brought their voices to more and more tables, and to more healthcare audiences. This was and remains painful for many of us; the retelling of stories that render us vulnerable and helpless results in the return of pain that leaves us raw. Front line workers found their voices to tell of their struggles, of a system that has lost its way, of burn out, of disillusionment. They spoke of loss of trust, loss of purpose and a sense of failure. Uncomfortable truths were revealed, assumptions were challenged and that coming together had many painful moments. It was a new beginning and a shift to a new way of thinking and a new way of speaking with and listening to patients and caregivers; but there was still a power differential that had to be overcome if we were to advance a commitment to improvement and excellence.
Keeping Together is progress
Keeping together was not easy and at many times has seemed frustratingly almost impossible. But the underlying imperative was coming to light; that if we are to build an excellent healthcare system for the future, that system must be co-designed with front line providers, patients, caregivers and administrators. This phase of keeping together saw the proliferation of patient advisory structures, which although meant to empower often came with no decision-making ability. Patient and caregiver advocates sought a place at the decision-making tables of organizations and systems as equals and contributing members; sought influence with front line providers, policy makers and administrators. Patients and caregivers have found their voice and welcome a new relationship with those working in the system; one with a shifted power dynamic and a focus on participatory healthcare rather than paternalistic. It is time to embrace co-design opportunities that go beyond the lived experience of patients and caregivers. We are more than our lived experience – we are engineers, healthcare professionals, economists, artists, executives, policy analysts – to invoke only our lived experience with the health system brings poverty to co-production efforts.
Working together is success
The province of Ontario’s decision to embark on a bold transformation of healthcare through Ontario Health Teams (OHTs) brings us the opportunity (and the requirement) to move to the actualization of patient and caregiver partnership where working together with providers and system leaders, embedded in the system, brings success. It must be the new normal, an integral part of each OHT, and in the system writ large. Patients and caregivers have insights about the system that are priceless. They are the experts in what gaps exist and what constitutes quality care. Welcoming the patient voice as a permanent integral part of co-design is how I define patient partnership. Credit and gratitude to Ms. Julie Drury, the inaugural Chair of the Minister’s Patient and Family Advisory Council in Ontario for relentlessly advancing the notion of patient partnership in Canada.
A twitter colleague used the phrase “patient presence” recently and it resonated with me and prompted me to ask what might the patient presence as partners look like? Patient presence means that patients are a part of every component of the OHTs. Some thought leaders have embraced this notion already and for that I am grateful. They have taken their authority and power and distributed it among patient and caregiver partners in a tangible and meaningful way. They are models of the new reality of working together as equal contributing members of a collective with a shared purpose.
To do this, we need to address historic power differentials that we have inherited. We must commit to working together, commit to shared decision making and commit to the objectives of achieving patient driven, patient inspired and patient co-designed healthcare. It is not enough that patients and caregivers have an opportunity to advise. In this new reality, patients and caregivers must be part of the formal decision-making structures in OHTs and beyond. We are all part of the same team, or at least we should strive to be. As patients and caregivers, we raise our voices not just to be heard, but to be involved in the dialogue and to be co-creators of our care and of our health system.
The future is bright in this new era of patient and caregiver partnership as we re-imagine a new vision for healthcare. If we’re serious about including the patient and caregiver voice in a robust way, then we need to ensure that voice has agency. Agency comes with equal footing and It means welcoming that voice as a decision making one. Co-designing the health system of the future requires this kind of partnership. We can claim success in working together, in achieving true patient and caregiver partnership when clinicians, patients, caregivers, and administrators identify as a cohesive community, invested in the health and well-being of Canadians.