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Participation and collaboration of patients, families and caregivers

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Healthcare organizations around the world leverage the expertise of patients, their families and caregivers. The goal is to better understand what they went through in order to improve the safety and quality of health services.

Patients who invest in their care have better experiences and experience better health outcomes. A growing body of evidence shows that targeted patient engagement is essential for transforming different sectors of the health system, including policy, care delivery, research and education. It is well known that working with patients, families and caregivers opens up a range of perspectives that can lead to improvements in care and health systems, which will then better meet the needs of those who use them. 1 

The Canadian Foundation for Healthcare Improvement (CFHI) supports and implements projects that involve and collaborate patients, families and caregivers in the organization, delivery and evaluation of health services. With its partners, it works to prepare and equip health organizations so that they become environments conducive to mobilization.

Our leading role in patient engagement

CFHI is recognized as a leader in patient, family and caregiver engagement. Since 2010, she has led collaborative projects and sponsored partnerships with patients and their families to improve care across the continuum. 2

Our first steps in engaging the public can be traced back to the Patient Engagement platform (PPP) initiative , which in 2010 and 2011 supported 17 Canadian healthcare provider projects in which patients were helping to improve performance. organization and delivery of services. These projects have brought about positive changes in accessibility, patient safety and efficiency and other quality aspects.

The PPP initiative has evolved into the collaborative project Agir in partnership with patients and their families . This project, which took place in 2014-2015, consisted of providing training, coaching, funding and other forms of support to 22 teams to help them establish successful partnerships with patients and their families as part of improvement projects. quality.

Building on this momentum, in 2015 we launched the Better Together campaign , with the Institute for Patient- and Family-Centered Care in the United States, and renowned health organizations in Canada. Throughout the campaign, health service providers received help to adapt and improve family presence policies. 3  In 2016, it was the turn of the Cyber collaboration Better Together: Hand in Hand with Families, which assisted 12 teams in the adoption and implementation of these policies, to see the light of day. In 2017, more than 50 organizations across the country made a public commitment to review and improve their policies. Since then, we have held round tables on the policies in question and continued our collaboration with the organizations concerned.

In 2018, we launched the Bridge to Home collaborative dissemination project to see care transitions from the perspective of patients and caregivers. With their public partners, the participating teams implemented a patient-focused transition kit, which gives patients and caregivers the information and situational understanding needed to improve their experience, as well as the insurance you need to go from hospital to home or to your living environment without a hitch.

Seeing the lessons learned from all these projects, we have multiplied the mobilization initiatives and partnerships to integrate them into all of our programs. In total, we have helped over 300 teams from coast to coast to increase their organizations' capacity to engage patients and their families in quality improvement and system redesign, as well as than to become, fundamentally, environments conducive to mobilization.

We believe in leading by example:

  • We have co-developed principles of mobilization that clarify our commitment to work in partnership and collaboration with patients, families and caregivers. To do this, we called on people with concrete experience, resource people and service providers.
  • Patient partners and patient resources are employees of CFHI, and lead many of the initiatives. In addition, our improvement teams collaborate with many other patient partners.
  • We continue to provide mentoring and coaching increasing the capacity of staff to engage patients, families and caregivers in a targeted and meaningful way.
  • Together with patient partners, we constantly reassess and adapt our internal processes - including those relating to the establishment of contracts, patient grants and patient recognition - to ensure their clarity and relevance.

The instigation of a culture change

Patient participation and collaboration is not limited to a single project or program. They are part of a culture change whereby patient participation is more than just expectation; innate and instinctive, it is the rule rather than the exception. This change restores the balance of power between healthcare providers and patients and fully recognizes the concrete expertise that patients, families and caregivers bring to health services as full partners.


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