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​​Patients for Patient Safety Canada (PFPSC) is a patient-led program of the Canadian Patient Safety Institute (CPSI). Its mission is to include the patient voice in patient safety improvement at all levels. The majority of PFPSC volunteers are patients/family members who directly experienced harm from patient safety incidents.

In 2004, the World Health Organization (WHO) launched its Patients for Patient Safety Programme. Since 2005, CPSI supported a network of patients and families which formally became PFPSC in 2007.  The strength of this relationship has led PFPSC to be recognized by the WHO as one of the leading patient networks around the world.

In 2014, CPSI commissioned Tazim Virani and Associates, an independent evaluator, to assess how the effectiveness and efficiency of PFPSC can be improved and what kind of impact the program has made. The findings are used to inform the direction and operations of PFPSC and, through sharing what we have learned, can be used to inform similar patient-led programs and/or patient engagement policies. The following is a summary of the findings.

For more information about PFPSC or to request a copy of the evaluation report contact patients@cpsi-icsp.ca.

Key Findings

There is sufficient evidence to conclude that PFPSC has succeeded in meeting the overall goal of championing the patient voice and has had some success in advancing the goal of safer health care in Canada and elsewhere.

Program Impact

PFPSC has made a wide ranging impact in its short history. The program, specifically PFPSC members representing the patient voice in patient safety improvement, has very good reach across the country and in particular with national organizations as evidenced in the types of organizations requesting PFPSC’s contribution. The increasing number of repeat requests from the same organization attests to the quality of members’ contribution to partner organizations.

Through sharing their experiences and contributing with the patient perspective in committees and working groups, PFPSC members strongly impacted individuals within the healthcare system (e.g. audience or committee members) as evident in the feedback provided by the partners interviewed. The engagement of PFPSC members in patient safety efforts helped some on their healing process, helped others to increase their competency in the area of patient safety, and helped many feel more empowered. PFPSC has had a significant impact on CPSI who has learned how to be more effective with patient engagement and has become a role model organization.

One of the most important impacts that PFPSC has contributed towards with health system partners/collaborators is the importance of patient engagement. Besides making repeat requests to PFPSC health care organizations are finding their own mechanisms to identify and engage patients from their local sources. A wide variety of examples are documented to attest to this impact.

Key informants provided various examples on how PFPSC is beginning to make an impact at the broader healthcare system level. Many collaborators and PFPSC members, however, felt that it was difficult to attribute healthcare system changes directly to the activities of PFPSC members - it is possible that PFPSC contributes to these system changes.

PFPSC Objectives

There is good progress towards meeting the PFPSC program’s objectives:

  • To increase the number of new relationships with health system partners – as evidenced by the 143 requests for collaborations received over the past two years;  
  • To increase the strength of existing relationships – as proven by the fact that 15 organizations made more than one request;
  • Grow the member’s capacity to be confident patient representatives – as stated by collaborating organizations who highly regarded member’s contribution to patient safety.

PFPSC Structures and Processes

The structures of PFPSC, which include CPSI administrative and corporate support, a PFPSC Co-Chair model, standing and temporary working groups are working well for the program. PFPSC’s association with the World Health Organization Patients for Patient Safety Programme) and CPSI, as a national body, provide legitimacy and credibility. Having CPSI provide the administrative oversight is highly regarded by members with some cautioning the need to have PFPSC ensure a strategic direction that meets members’ aspirations and needs.

The program has also been able to attract new members – membership tripled since its founding (now at 62 members). PFPSC ensures a rigorous process for interviewing new members as well as ensuring that through capacity development, all members become confident champions. Although there are mechanisms established for orientation and support for members, motivating and engaging all members is an area that requires improvement. Communication within the program is largely effective while there is indication that external communication could be improved.

Recommendations

The independent program evaluation identified several strengths and opportunities for improvement of PFPSC:

  1. Program positioning – consider current environment and needs at Canadian level
  2. Program leverage opportunity – build more commitment for patient engagement in patient safety at all system levels
  3. Program operations - improve ongoing monitoring and evaluation of program activities
  4. Program administration - continue with current model; support PFPSC groups operate more effectively
  5. Program offering – consider a menu of services that can be customized
  6. External communication - increase PFPSC’s visibility among health system partners and the public
  7. External communication - articulate key messages to help current and new members in their work
  8. Internal communication, Community of Practice – find ways to better serve member’s needs
  9. Internal newsletter - ongoing improvement to ensure value for members; consider launching it externally
  10. Member orientation and support – clarify roles, responsibilities, processes and supports
  11. Member retention – identify meaningful and valuable collaborations aligned with member interests
  12. Member engagement - increase number of members engaged in patient safety work
  13. Participation requests – automatize and streamline, add resources to support the collaboration
  14. Participation tracking and evaluation - gather immediate and long term feedback and impact
  15. Knowledge transfer - disseminate PFSPC’s experience ; consider public education

Click here to see some of our members’ videos and stories and click here to see what PFPSC members do.