The volunteer members of Patients for Patient Safety Canada (PFPSC), a patient-led program of the Canadian Patient Safety Institute (CPSI) (now Healthcare Excellence Canada (HEC)) and the Canadian arm of World Health Organization's (WHO) Patients for Patient Safety global network, have contributed their unique experiences and perspective to patient safety efforts since 2006. While many members have personal stories of heartache, loss, grief and frustration due to unsafe care, they are able to look beyond personal events, draw from their experience, and partner with the people who work in the healthcare system in a shared mission of Every Patient Safe.
From the very beginning, PFPSC played a key role in supporting global efforts in patient engagement and patient safety. As the Canadian arm of the World Health Organization's (WHO) Patients for Patient Safety Program PFPSC with support from HEC, we have contributed to many initiatives that advance safe care both in Canada and around the world.
PFPSC's strong history of collaboration and success played a key role in HEC achieving the prestigious designation offered by the WHO Director General as a WHO Collaborating Centre for Patient Safety and Patient Engagement. Of the more than 800 WHO Collaborating Centres from 80 countries worldwide, including 31 from Canada, HEC holds the distinction of being the only one in Canada with a focus on both patient safety and patient engagement and the only one in the world to be focused on patient engagement.
WHO recognizes PFPSC as a global leader as well as many in Canada as we hear from different evaluations.
In 2005, the World Health Organization (WHO) made patient engagement a priority by creating the Patients for Patient Safety Programme (PFPS) which included a global network of patient safety champions. The program aims to include the patient, family and community voice into all levels of healthcare through engagement and empowerment. All PFPS Champions are required to attend a workshop and to commit to the vision described in the London Declaration and the PFPS Collaborative Agreement.
The first WHO PFPS workshop (London, 2005), laid the foundation for a global movement promoting active patient engagement and partnership to help address patient safety issues. The collective voice of the 21 PFPS Champions from 19 countries, including one Canadian, led to the drafting of the London Declaration. The second WHO PFPS workshop (San Diego, 2006), attended by 10 Canadian champions (co-sponsored by CPSI), helped articulate the vision and mission for this global initiative.
Recognizing the importance of including the patient perspective in efforts to reduce patient harm and make care safer, HEC supports Canadian patients and family members in developing their capacity as patient safety champions connected with a global network since 2005. CPSI, along with Consumers Advancing Patient Safety, Calgary Health Region, and Winnipeg Regional Health Authority co-sponsored the first Canadian meeting (Vancouver, 2006) where 22 volunteer patients and family members, nominated and supported by provincial health regions, laid the foundation for PFPSC. At the second meeting (Winnipeg, 2007), hosted by PFPSC, CPSI, World Alliance for Patient Safety, and The Pan-American Health Organization, the PFPSC members agreed to uphold the London Declaration and developed the PFPSC vision, mission and goals. The PFPSC internal structures, processes and objectives designed by members, formed the backbone for PFSPC's impact on patient safety. The affiliation with HEC was and continues to be a vital success factor for PFPSC.
Impact on patient/family partners The volunteer members who contribute to patient safety improvement say that representing the patient voice and knowing that their participation has changed one person, a room or the system helps them heal and make sense of the harm they experienced. In addition, being part of PFPSC and connected with individuals with similar experiences empowers and energizes members to continue their efforts to make care safer. "Being part of the PFPSC gives you energy and a group voice; you hear about what other people have done. That collective wisdom and collective energy… keeps you going and yes, I can make an impact." (PFPSC Member, Independent PFPSC Evaluation)
Both PFPSC members, as well as those who engage with them in formal academic education or at events (e.g. conferences, learning programs) or long-term collaborations (e.g. committees, boards) say in evaluations that the patient perspective influenced their attitudes, behaviours and practices. With over 100 such collaborations reaching thousands of people every year, the PFPSC volunteers continue to shift the perception of patients as partners across the country and internationally. [click here for examples of what our members do] "It's always the patient's stories that resonate. As a policy analyst, those things help shape and inform the work that I do because it brings that perspective that I may otherwise not have thought about in my work, and it just makes it really personal… I know we come to work each day and improve safety and quality and that's our goal, but when you hear those stories, it's that reality check…they are real people, real experiences at the end of care of services that we provide; it just elevates the kind of care we can provide… we're doing things that not only make sense from an administrative perspective but that it will have a meaningful impact to people's lives." (Collaborator, Independent PFPSC Evaluation)
Several of our members, driven by their experience with unsafe care, have pushed for and changed patient safety practices locally. They also shaped resources that influenced patient safety practices in Canada and globally (see a few examples here). While there are no current metrics to demonstrate direct correlation, we believe that PFPSC shaped apology, disclosure and quality of care legislation, policies and practices.
Patient engagement and patient-centered care is top of mind in health system design. The number of Canadian and International organizations that reach out to PFPSC for advice and contribution continues to increase every year. We believe that the way PFPSC and HEC role modelled patient engagement for over a decade influenced patient engagement in Canada which resulted in more organizations supporting patient engagement, developing patient-centered resources and demonstrating excellence in patient safety through patient engagement.
HEC values the perspectives of patients and families as crucial to patient safety improvement at all system levels and in all healthcare settings. The HEC goal to have 100% programs co-developed and/or delivered in partnership with patients is met every year. PFPSC contributes as expert faculty, steering committee and working group members, reviewers, presenters and expert advisors. This involvement includes education programs (like Patient Safety Education Program - Canada, Canadian Patient Safety Officer Course, Advancing Safety for Patients in Residency Education), research (like studentship, researcher in the room), tools and resources (governance, analysis, safety competencies), as well as recruitment of senior staff, CEO and key corporate processes.
We are committed to continue on our vision of "every patient safe" and live our pledge for partnership: "In honor of those who have died, those left disabled, our loved ones today and the world's children yet to be born, we will strive for excellence, so that all involved in healthcare are as safe as possible as soon as possible." London Declaration.