It can be hard to pinpoint the moment a movement is born. Often it is on reflection we can make sense of things, see the patterns, understand how the momentum was established. In the case of Patients for Patient Safety Canada (PFPSC) it started with individual moments of pain, loss and in most cases isolation. Some Canadian healthcare leaders were moving in the braver direction of acknowledging that healthcare harm is real, needs to be acknowledged and amends made. At the same time patients and families were asserting the need for honesty and support though not all were receiving it, and many were fearful their future healthcare needs would be jeopardized still, they needed to tell their stories. Social media was providing a forum not previously available to talk about healthcare associated harm. A consciousness was being born globally.
In a Vancouver conference room, a small collection of global and Canadian healthcare leaders gathered in 2006 for a discussion with families and patients who had experienced harm. As the raw and painful stories of loss spilled from patients and the families left behind it was clear to the leaders in the room that a) these were important stories that needed to be heard by all healthcare leaders and providers, b) patients and families had unique insights that needed to be integrated into the design of healthcare, and c) those healthcare leaders accountable for the system owed a debt to all patients and families who experienced healthcare associated harm that minimally required honest, open and timely conversations about how the harm occurred.
After interviewing a small group of individuals who helped establish Patients for Patient Safety Canada, phases of development emerged and may be helpful to consider as we collectively look to the next 15 years. Before discussing these phases, it is important to remember that while evidence of the growth of this organization is present in some jurisdictions in Canada it is not necessarily evenly true of all areas. In fact, it may also be true that variability can be found in a single city, hospital, unit, or shift. Indeed, reliability in healthcare remains elusive and worth considering how PFPSC can contribute to increased systems reliability in the coming years.
Key Dates and Meetings:
In 2005 a disparate group of Canadians with a keen interest in patient safety travelled to London for a World Health Organization (WHO) meeting in London. The meeting was chaired by Sir Liam Donaldson and individuals from around the world were joined by passionate Canadians. It was during this meeting that the London Declaration was created by and for individuals harmed by healthcare who in turn, were willing to work with the healthcare system to champion improvement. All present at that meeting were declared Patients for Patient Safety Champions.
A group of Canadian healthcare leaders and patients and families who experienced harm came together in Vancouver in 2006 once again with Sir Liam Donaldson. Others in attendance included early American leaders, Sue Sheridan, an advocate, and family member and Martie Hatlie, a healthcare system leader. During the two-day meeting participants discovered one another, learned about each other’s pain, the similarities of their stories, and the power of being together. It was during this meeting that leaders from CPSI (now Healthcare Excellence Canada (HEC)) recognized the need to establish ongoing support for the group that would, by early 2007, become known as Patients for Patient Safety Canada. Participants in the London meeting and founding members of PFPSC describe this period as both, difficult and powerful.
Key Dates and Meetings:
In 2007 HEC published the first version of the Canadian Disclosure Guidelines and began working with provinces and territories to advocate for apology legislation. At this point in their development, individuals from PFPSC began participating in developing patient safety resources with contributions to the Canadian Disclosure Guidelines and membership in the working group that developed them.
By 2008, PFPSC became organized with Champion Co-chairs and regular meetings of members. They spent time planning for the path ahead and developing their terms of reference. In 2009 PFPSC members gathered in Winnipeg to make the decision to become a funded program of HEC as opposed to an independent organization. Not everyone agreed with the decision. Staying with HEC guaranteed financial and administrative support for PFPSC to continue their work. Many preferred the relationship with HEC as both groups were well aligned and it meant that fundraising would not be required of members, rather that they could immediately begin working with the system to make care safer. Alternatively, some members felt their story, messaging and advocacy may be impaired by the close ties to HEC. They were concerned they would lose their impact as harmed patients and families seeking to advocate for change.
By the end of 2009 some members left PFPSC to advocate for improved health system safety on their own to ensure the independence of their message. Members state concerns about independence does come up occasionally, particularly when they believe making a strong statement about the system is necessary. Generally, the partnership has been highly productive for HEC and Patients for Patient Safety Canada and the healthcare system at large.
Key Dates and Meetings:
By 2010 PFPSC members were connecting to local, provincial, national and international initiatives. They established a reputation for defining the heart of any patient safety effort and provided a focus on patients and families through their story-telling. The pain and power of truth-telling is clear however it is equally clear that in some cases story-telling becomes re-traumatizing. It is during this period that work begins to determine how best to support PFPSC and ensure that when needed members are supported to step back from the work and care for themselves.
By 2011-12 members were participating in the co-design of resources for improving patient safety. The patient and family story continues to be key, and it is during this time that members develop a sophistication to shaping their stories to match the focus of the education or initiative they were working to influence. A knowledge transfer working group was established and PFPSC members become involved in long term projects as opposed to a single episode of storytelling.
A review of documents from this era reveals that PFPSC have a significant profile. They are not simply one member of a working group within an initiative instead they are writing forwards to documents, participating in creating them and reviewing and making suggestions on changes.
Key Dates & Meetings:
The power of patient and family presence is evident today. Patients for Patient Safety Canada have become key members of the patient safety community, they are expected participants and welcomed. Their advice is sought out by healthcare leaders in organizations, across provinces and territories and at Health Canada.
Patients for Patient Safety Canada members continue to tell their stories, but they have moved beyond mere participants and are now viewed as patient safety leaders by many. As one member put it, ‘healthcare was ready to hear us’. The PFPSC message of, Every Patient Safe, is embraced and the group’s steadfast efforts to remain assertive but not aggressive leads to members being treated as equals, particularly at national tables. The legacy of contributions from PFPSC is substantial. There are no Canadian patient safety efforts without PFPSC member contributions be it policy, medication safety, the Canadian Incident Analysis Framework, The Canadian Disclosure Guidelines, or publications on teamwork and communication.
Other countries now look to Canada as a leader in the inclusion of patients and families in patient safety work. Members from PFPSC are frequently asked to provide lessons learned to countries working to develop patient-centered safety advocacy efforts. They are active global mentors to other national systems and all this just a short 15 years after their own initial meetings, a tribute to the hard work of passionate Canadian patients and families.
So what of the next 15 years? The hope from PFPSC members, nothing happens without patients and families at the table. This includes the development of policy, design, and delivery of all healthcare. Further to this, if healthcare fails and harm does occur, the expectation is seamless support and disclosure. As importantly the healthcare system will be a vibrant learning community and patients and families will be at the center of it. All this leads back to reliability. Patients and families will need to reliably be included in all efforts to improve patient safety in all regions of Canada. Continued growth and expansion will remain an important focus of Patients for Patient Safety Canada.
Healthcare leaders and PFPSC members interviewed for this article remember the intensity and emotion in the room in Vancouver in 2006 and the urgency to improve healthcare. One healthcare leader stated,
This was the moment that I realized I had not been authentically engaging patients and families. It was here that I learned about authentic partnership. We were building insight and awareness that this was a going to be a huge piece of the work…it was a massive shift. It was a profound personal and professional milestone. We needed kindness toward those in the system but firm in resolve that change was needed.
Patients for Patient Safety Canada is a movement that began with passionate people in pain desperately wanted to make healthcare safer. Most agree that it took two years for the initial group to begin to move past the intensity of emotions caused by healthcare associated harm and towards systemic solutions. Patients for Patient Safety Canada has been successful because its members have a desire and commitment to make care safer for those that come later. Quite simply they wanted to help others avoid the same outcomes and while the work is not yet complete, the path to improvement is well understood and partnership with patients and families is undeniably the place to start in order to keep Every Patient Safe.
Written by Paula Beard for PFPSC