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The volunteer members of Patients for Patient Safety Canada (PFPSC), a patient-led program of the Canadian Patient Safety Institute (CPSI) and the Canadian arm of World Health Organization's (WHO) Patients for Patient Safety global network, have contributed their unique experiences and perspective and impacted patient safety efforts for a decade. 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 collaborate with the healthcare system in a shared mission of Every Patient Safe.

A global movement combined with individual passion

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 incorporate 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.

Nurtured by Canadian support, a patient-led program takes shape

Recognizing the importance of including the patient perspective in patient safety efforts, CPSI has supported 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 articulated the PFPSC vision, mission and goals. Following the meeting, the PFPSC Charter was developed, and the first Board and Co-chairs elected.

The internal structures and objectives designed by members, including a revised recruitment, orientation and participation requests management processes, formed the backbone for PFSPC to begin making an impact on patient safety. In August 2010, after months of discussions and careful consideration of available options, the internal shape of PFPSC changed when the 40 members voted to become a program of CPSI and dissolved the Board with the Co-chair model with standing working groups set to continue. This internal change did not slow down the impact our members were making on patient safety, but actually enhanced it as the PFSPC reputation was now heightened by being affiliated with CPSI.

The 70 PFPSC volunteers represent the patient perspective in over 100 collaborations at all system levels each year.

The impact on patient safety becomes visible

Impact on patient/family partners

The volunteer members who decided to contribute to patient safety improvement say that representing the patient voice and seeing that their participation changed one person, a room or the system helps them heal and make sense of their loss. In addition, being a part of PFPSC and connecting with individuals who suffered in similar ways helps them heal, empowers and energizes them to continue their volunteer efforts.

"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, interview)

Impact on providers, students, educators, leaders

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 around 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 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, Interview)

Impact on practice, organizations and systems

Several of our members, driven by their experience with unsafe care, have pushed for and changed patient safety practices locally.

"[The local region] requested feedback on the quality framework that would be used by healthcare providers and members provided written feedback. I was quite pleased that the committee endorsed all of the feedback and incorporated all of the changes that were recommended…a lot of great feedback: language, order of information, things that would make a difference to the public, the patients." (Collaborator, Interview)

A patient safety area very close to many patients/families is disclosure and incident management. This is one of the first areas of focus PFPSC worked on beginning in 2006. The patient perspective shaped key resources including the Canadian Disclosure Guidelines, the Canadian Incident Analysis Framework, the Patient Safety and Incident Management Toolkit, and the Accreditation Canada Required Organizational Practices. While it is hard to demonstrate direct correlation, we believe that the patient perspective shaped apology, disclosure and quality of care legislation, policies and practices.

"With the recent amendments to the Excellent Care for All Act, Ontario now has a unique piece of legislation in Canada where the importance of the patient voice is in the act. I couldn't have dreamed five years ago that this would be the case." (CPSI Leadership, Interview)

Patient engagement and patient-centered care is top of the mind in health system design. The number of Canadian and International organizations that reach out to request that PFPSC provide the patient perspective continues to increase every year [click here to read the highlights from the 2014 PFPSC independent evaluation].

It is extremely exciting to see that patient groups (e.g. patient advisory groups) and patient-centered programs and resources (e.g. resource hub, toolkits) are blooming both locally and provincially across the country. We celebrate their successes, partner with them every chance we get and welcome their much needed contribution to patient safety improvement. [click here to read about the champion awards]

Ingrained in all CPSI initiatives

CPSI values the perspectives of patients and families as integral to patient safety improvement at all system levels and in all healthcare settings.

What started as occasional collaboration with PFPSC for an event or project has become CPSI's modus operandi, a part of everything CPSI does. Now, 100 per cent of all CPSI programs and initiatives meaningfully and authentically involve patients in their development and/or delivery as expert faculty, steering committee and working group members, reviewers, presenters and expert advisors. This 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.

"By partnering with patients in all of its programs and senior team recruitment, CPSI is a role model and exemplary healthcare organization in patient engagement.  Over the years, CPSI has helped other organizations and governments at all health system levels across Canada and internationally to develop and expand their efforts to engage patients and families in quality and safety. This inspires me, as a Co-chair, and PFPSC members to continue to volunteer our perspective to patient safety efforts at all system levels." Sharon Nettleton and Denice Klavano  

…we are 10 years old but this is just the beginning of our journey towards "every patient safe"