I have been involved in the healthcare system in Ontario, Quebec, and internationally for over decade. I did not choose to be in this role.
As a 'medical mom' navigating my daughter with a rare disease through the medical system, I shared my experience as a patient and family advisor – engaging with healthcare organizations and teams when I was invited to. I saw potential and value in sharing our experiences to improve care, patient safety, communication and coordination across the system. I knew that our lived experience was essential to ensuring appropriate policy decisions and system changes were being made.
Over the past two years, I have held the inaugural role of Chair of the Minister's Patient and Family Advisory Council for the Ministry of Health in Ontario. This has been a unique role for a provincial healthcare system that has emphasized a 'patient-centred' approach to healthcare policy, models, and systems thinking.
Certainly, the actual appointment of a minister's council is unique and affords a significant amount of emphasis on the role of patients, families, and caregivers in advising, engaging and partnering in discussions and decisions related to the structure and coordination of provincial healthcare. At the same time, patient engagement is still not a fully appreciated or understood term. It is regularly at risk of being co-opted by administrators, bureaucracy, and politics. It requires strong leadership, commitment to the principles and values of engagement, and an understanding and appreciation that patient, family, caregiver engagement is unique and is not the same as traditional public engagement.
Patient Partnership is re-establishing the term for patients as partners. It is about taking our place at the table. It is about organizations recognizing that lived experience is knowledge and expertise that they cannot ignore and is not a 'nice to do' or a 'when convenient'. Patient partnership is the evolution of patient engagement.
Patient partners are becoming more and more sophisticated in understanding the healthcare system in their communities, regions, and provincial jurisdictions. They are pushing for models of collaboration and deliberation. Co-design is a term often used to depict the patient partner's interest in sharing power and being fully embedded in the decision-making processes.
Patient partnership is not a "corner of the desk" exercise. It requires skill, knowledge and leadership. It must be implicit in all healthcare conversations and I am inspired by the leaders who are placing patient partners in quality improvement positions, senior leadership and hiring committees, and boards of directors. Leading organizations are co-designing their strategic plans with patient, family, caregiver advisors. Physician organizations are recognizing the potential and power of the 'patient voice' and are having conversations with patient partners and appointing advisory committees to help them get started in this space.
This is an evolution. We are already engaged. We are looking for partnerships so that our lived experience can facilitate better policy by learning about the barriers, challenges and solutions from another perspective and with a different lens that those traditionally relied upon. Organizations that are truly committed to 'patient centred care', the principles outlined in patient declaration of values documents, quality improvement and patient safety understand that the evolution of patient partnership is a win.
As I reflect on the past decade of this work, I am inspired by the patients, families, and caregivers I have met along the way who have chosen to share their stories and stand on the foundation of their lived experience to help others improve the care and safety of patients across the system.
This is not an easy or glamourous role. They are true champions of our healthcare system and must have a place at the table.
Julie Drury is the Chair of the Patient and Family Advisory Council for the Ontario Ministry of Health and Long Term Care. Julie is passionate about the patient / family / professional partnership and experience in health. In her professional role, she facilitates and provides the patient and family perspective in healthcare policy and decision-making.