Healthcare Quarterly

Healthcare Quarterly 21(2) July 2018 : 30-34.doi:10.12927/hcq.2018.25625
Engaging Stakeholders

Untapped Potential: Engaging in Meaningful Client and Family Partnerships to Drive High-Quality, Safe Care

Sonia M.C. Pagura, Laura Oxenham-Murphy, Diane Savage, Adrienne Zarem and Alifa Khan

Abstract

Holland Bloorview Kids Rehabilitation Hospital developed an innovative framework that fully integrates 17 family and youth leaders into its accreditation preparation process to drive its quality and safety improvements. The hospital established a formalized committee, the Family Leader Accreditation Group (FLAG), where staff and family leaders (FLs), partnered equally to meet, update and share quality and safety initiatives as part of the accreditation preparedness process. The Quality, Safety and Performance (QSP) team was driven to partner more deeply with clients and families to advance quality and safety.

In addition to the FLAG group, the QSP team partnered with the Canadian Patient Safety Institute, master facilitators and FLs to update and contribute to existing learning modules in the Patient Safety Education Program. This partnership was anchored in the belief that providing knowledge and skills would ensure that families had an equal voice in patient safety.

This innovative partnership is building capacity among clients and families and provides a foundation for other organizations to model in their approach to improve, transform and provide quality and safe care.

Introduction

In recent years, legislative changes have placed greater emphasis on and mandated organizations to use patient-centred frameworks within a hospital context. Despite legislative shifts such as the Excellent Care for All Act, Bill 8 and the Patients First Act, there appears to be a lack of awareness or true conceptual framework for engagement (Barrineau and Bozarth 1989; Hughes et al. 2008; Leplege et al. 2007; Slater 2006). Organizations continue to experience tensions in their ability to translate these conceptual models into a reproducible framework (Gask and Coventry 2012). Holland Bloorview Kids Rehabilitation Hospital (HBKRH) over the past decade has evolved the concepts of patient-centred care through the co-design of structures, process and specific roles. The Client and Family Integrated Care (CFIC) structure, anchored in the Carman et al. (2013) framework, has enabled significant advancements in the integration of clients and families in all improvement initiatives.

Accreditation Canada underwent transformational shifts with all standards, including the expectation of partnership and shared decision making with clients and families (Accreditation Canada 2015). In early 2016, the organization approached the Family Advisory Committee (FAC) to garner support and elicit participation from families in the accreditation process. The goal of the Quality, Safety and Performance (QSP) team was to further deepen the partnership as it relates to advancing client-centred quality and safety and to create a formalized structure that would have future sustainability within the quality and safety arena. Through partnership co-created was the entity known as the Family Leader Accreditation Group (FLAG), which focused on working collaboratively with hospital leaders and staff to prepare the organization for its on-site accreditation survey while building the internal capacity of family leader (FL) quality and safety specialists (FLQSSs) to drive quality and safety in a partnered way. The 17 volunteers committed upwards of 45 hours of time over 18 months to advance the quality agenda and had equal voice and decision making at each table. The strength and success of the model contributed significantly to the strategic plan creation "No Boundaries 2017-2022" having a focused enabler "evolving client and family centred quality and safety" that further solidified the value of partnership and engagement with families.

Innovative Approach to Patient and Family Engagement in Accreditation

Since the inception of the new standards necessitated organizations to embed client and family voice in different ways, many have struggled with meeting the rigorous standards and authentically capturing input. The innovative structure of FLAG and the structure to embed FLQSSs into each accreditation group and identify the education requirements of FLQSSs to ensure equal voice at pivotal assessment points ensured advancements in our journey in ways not initially imagined, well beyond just meeting standards.

The FLAG and education programs' (Patient Safety Education Program [PSEP] – Canada) aim was to improve the way we deliver high-quality care for patients and families through structures that create the space for conversation, evidence-based methodologies that build capacity through training FLs in new ways to advance safety and ensuring that families have equal voices in decision making. Developing a formalized structure provided the organization with structure, processes and people to partner and engage with patients and families in quality and safety initiatives (Canadian Patient Safety Institute n.d.). Patients and families were formally trained and certified through the PSEP program at the Canadian Patient Safety Institute (CPSI), which focused on patient safety knowledge and building skills to build further organizational capacity. The program was customized to provide the system understanding of patient safety, in addition to a customized module that developed skills using solution-focused coaching to partner effectively with clinicians in patient safety. This training created a concrete plan for FLAG and the FLQSSs so that their shared insights, expertise and lived experiences were grounded in knowledge and could then be guided through the accreditation-related processes and HBKRH's organizational mandate to evolve client-centred quality and safety. From a system level, harnessing this untapped potential of knowledge, lived experience and perspective allows organizations to minimize "waste" in initiatives that are not impactful through partnership with families in understanding what matters, increases human resource capacity to drive change and creates a shared accountability between the patient/provider and ensures the grounding of purpose to drive quality and safety changes.

To our knowledge, we are the first hospital in Canada to embed a cohort of clients and families fully in all accreditation teams, creating their own accreditation structure and integrating them into leadership conversations to advance care. We also are the first organization in Canada to create a tailored PSEP module with a focus on "clinicians as partners" and a call to action for clients and families leading quality and safety through this certification.

Implementation

The Family and Youth Advisory Committees were provided with information 18 months in advance of the organization's on-site accreditation survey. Recruiting members for the FLAG structure was a joint effort between the organization's QSP and CFIC teams. HBKRH already had a robust engagement structure that has been under evolution since 2008. The Family Leadership Program (FLP) matched interested participants with their areas of interest, and the QSP portfolio created materials that provided a full orientation to the group to accommodate scheduling and knowledge translation. The PSEP training was built into the process to offer additional education and skills. In addition to the training course, FLAG members were offered a separate educational opportunity, solution-focused coaching (SFC), to assist in the conversations to advance change at the level of the accreditation teams. The family and youth leaders who stated that they were interested in this 18-month commitment were placed into accreditation steering committees across the hospital and within every working group to drive improvement. The FLAG updated and shared quality and safety initiatives occurring across the teams to ensure implementation in a harmonized and standardized way to improve reliability. This framework naturally evolved during the accreditation preparedness process, and clients and family expressed their desire to be part of local improvement initiatives and committed more time as they found this journey to fulfilling.

Orientation: Families were asked to complete a baseline survey to understand their knowledge of accreditation, quality and safety as well as their roles in the process. Orientation binders and toolkits were created containing the names of team members, the chair of FLAG and QSP leads and the standards they would be advancing with highlighted and tabbed sections to focus on the client- and family-centred criteria in the standards. The orientation toolkits outlined the purpose of the partnership and highlighted roles and responsibilities to ensure staff and families worked together cohesively. Multiple orientation and training sessions were also provided to hospital that staff to provide the skills to effectively engage and partner with clients and families within their accreditation teams.

Team Structure: Families fully participated in the self-assessment questionnaire, creation of action plans, prioritization of activities and improvement working groups. Each accreditation team had two to five FLs, with the ambulatory care standards team having the most FLs (n = 5) as it was a new standard for the accreditation cycle and required the most input from our families. The accreditation teams at a minimum met on a monthly basis, and the expectation of the FLs was to provide their input and ask the necessary questions to ensure that evidence was present and met the requirement of family engagement. Furthermore, a process was created whereby rich conversation that resulted in an innovative idea beyond the scope of accreditation generated a central repository of improvement. Engagement and review of information in the working groups tapped into various methods that would meet the needs of the FLs and ensure respectful and meaningful input.

FLAG structure

The FLAG group created a clear terms of reference work plan, and objectives and met every quarter to address issues contemporaneously. Members shared their experiences and contributions across the teams and identified additional opportunities to advance the work that could be applied across each of the groups. This allowed the group to learn together and share consistencies that the teams collectively should be addressing. The FLAG chair met regularly with members of the organization's core accreditation team to discuss concerns, opportunities and feedback to advance the work of accreditation. FLAG also reported to the FAC, providing regular updates, and solicited for advice on accreditation-related work or perception of engagement. The Quality Committee of the Board and the Quality Steering Committee were kept abreast of the advancements and provided updates and requests to remove barriers to advance the work of the teams.


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FLAG communication structure

Initially, the quarterly FLAG meetings were the formal check-in points with FLs, along with the commitment that members could connect with the FLAG chair or a member of the core accreditation team at any point. As the work intensified closer to the survey date, FLAG members indicated that a more formalized check-in was needed, as well as more information to allow them to see the advancement of the work leading up to the survey. Monthly check-in surveys (optional) were on the third Monday of every month to provide FLs with a simplified and structured process to provide feedback on the partnership. As part of the survey, FLs could indicate if they wanted to connect with either the FLAG chair, a member of the accreditation team or their accreditation team lead. The mechanism generated different opportunities for some members to be placed to another team of interest when their original assignment was complete. In addition to the more formal check-ins, communication on the first and fourth weeks of the month was provided to give an organizational lens of activity and local lens of activity to ensure the connectivity, as well as material for discussion at the FLAG meetings.

In parallel with the formalized check-in points, a more robust communication strategy was implemented. The rationale for this change was that there was variability experienced across each of the accreditation teams, particularly around the frequency of meetings. This resulted in certain FLs whose teams were meeting less frequently feeling an absence or lack of communication.

Evaluation Methods

To evaluate the work and success of the partnership, FLAG members were asked to complete pre-, mid-cycle and post-accreditation surveys. These surveys were in addition to the monthly touch-point surveys initiated part-way through the process. The evaluation surveys included 13 unipolar five-point rating scale questions and two open-ended questions. The questions addressed role clarity, skills and knowledge and purpose. In addition, FLAG members were invited to participate in a focus group following the accreditation on-site survey to review and build on responses in the post-evaluation survey. This focus group was facilitated by members of the CFIC team, with members of the QSP not present to foster honest and open feedback. The PSEP training also had a formalized evaluation (pre and post) to understand if the training would impact their knowledge, skill, scope and ability to advance quality and safety.

Hospital staff members were also invited to participate in accreditation debrief conversations so that the quality team could create a sustainability plan to move the organization into the next phase. The questions posed in the debrief conversation were generative in nature and focused on what staff found meaningful in the preparation process and what elements should be sustained to build on the positive momentum.

Results

Overall, there was a sense across our FLAG members that FLAG has a true impact, and members felt "honoured" to be part of the process. The post-evaluation results demonstrated a clear shift in participants' understanding of the goals of accreditation, with 87.5% of members indicating that they strongly agreed that they had a clear understanding of the goals of accreditation, compared to 66.7% in the pre-evaluation survey – a 31-percentage-point improvement. FLAG members clearly felt accreditation is a valuable activity for the organization to enhance quality and safety, with 100% of members indicating that they strongly agree with this statement in both the pre- and post-evaluation surveys. The importance of authentic family engagement in leading to better patient experience and outcomes is a value clearly held by group members, with 100% of members indicating that they strongly agree with this in both pre and post surveys.

Role clarity as members of the accreditation teams as well as in the FLAG structure was clearly understood, with 100% of members indicating that they understood their roles in both of these groups and that their personal efforts and contribution were valuable in preparing the organization for accreditation. Furthermore, 87.5% of FLAG members indicated that being involved in accreditation helped to strengthen their awareness of HBKRH's ongoing safety and quality priorities. Members also indicated that they appreciated being involved in the preparatory work from the beginning so that they could experience and have input into the entire journey.

Evaluation of the PSEP training was captured through both quantitative and qualitative methods. Feedback on the training programs included an overall conference evaluation and individual session and facilitator evaluations. The average overall evaluation rating for the session content and facilitators was 1.61 based on a six-point Likert scale (1 = strongly agree and 6 = strongly disagree). Compared to national benchmarking values, participants scored higher on the question of impact on their attitude toward teaching patient safety by 13% and a 2% increase in having obtained new information as a result of the course. Qualitatively, participants also responded with:

"I learned how to better partner with clinicians."

"I enjoyed witnessing and participating in various teaching skills of the content."

Post-accreditation Survey Evaluation

Through the evaluation survey and focus group, we learned there are three main areas of improvement where the organization will focus its effort to evolve the structure into the next phase:

  1. Streamline reading and information; create one-page summaries that highlight what you need to read, what would be nice to read and what you can read if you have time or want further information.
  2. Support staff to receive and respond to FL feedback and input; include a module on how to receive feedback in the existing authentic partnership training for staff.
  3. Participation options: provide more modalities of meeting participation (i.e., phone and video conferencing); also consider if FLs are always needed at a particular meeting or their feedback can be gathered in advance over the phone or over email and then shared with staff at a working group meeting.

In total, over 1,500 hours of service were volunteered by our FLAG members, which helped the hospital better understand what true partnership and co-creation mean. As recognized by our FLAG vice chair, "FLAG was a commitment that Holland Bloorview made to every child and family to ensure that our perspective mattered, and we were welcomed into the conversation to devise care that is meaningful and safe."

FLAG successfully co-designed, led or provided input to 47 unique quality and safety improvement initiatives. There have been a significant number of system impacts to this partnership. Along with the FLAG chair and vice chair being selected as two of the first cohort of family/patient surveyors with the Health Standards Organization (HSO), we have been asked to share this model with other hospitals across the country and with organizations, including HSO and the Ontario Hospital Association. We believe that this model of partnership and dyad approach with staff will only drive care in ways that are cost-effective and meaningful and have a positive impact on client experience and outcomes.

The incredible partnership was highlighted by the accreditation surveyors, as outlined in the excerpt for the final report:

What else can we say about client and family engagement at Holland Bloorview but "WOW!"… A great initiative is the Family Leadership Accreditation Group (FLAG), a team created some months ago that was responsible for ensuring that family and client representatives were part of all teams reviewing the Accreditation standards. They reviewed questionnaires (satisfaction, client safety, etc.); assessed all quality improvement initiatives to showcase them; participated in the senior leadership tracers and the client safety education program; and reviewed and advised on the pandemic plan.

After hearing back from over 150 front-line staff in the accreditation debrief conversations, it is clear that the partnership was highly valued.

Discussion

The partnership was critical in HBKRH's successful achievement of Accredited with Exemplary Standing with 100% compliance for the second cycle in a row. Debriefing with FLAG members highlighted the desire to continue to advance the partnership and shared leadership of quality and safety across the organizations as stated by one member, "I believe the incredibly positive results from Accreditation Canada are a reflection of the hospital's commitment to quality and safety in full partnership with clients and families. I am excited to work together to continue this exciting journey." Some of the ways the hospital is currently advancing this partnership include having fully partnered with the FLAG chair and vice chair to co-create the organization's annual quality improvement plan and a co-leadership model that includes the four FLQSS members who are steering the development of the organization's next three-year Integrated Quality Management Plan.

PSEP – Canada has provided, and HBKRH has made significant inroads in equalizing, the knowledge field of patient safety to allow conversations to happen in a more meaningful way. HBKRH's FLs, who were part of this journey, are now part of provincial and national initiatives and committees and contributing in ways that are perhaps outside of the lens of experience of the system. They are armed with knowledge of what a system-like safety initiative is, what it should look like and how they can contribute that knowledge while overlaying the patient experience. The next stage of evolution is to shift the structure to an FLQSS that will continue to have its own structure to discuss the quality and safety agenda and shift quality and safety at the micro, meso and macro levels through leadership and directly leading change.

Our leadership and innovative partnership built capacity among clients and families as well as provided a foundation for other organizations, sectors and health systems to model in their approach to improve, transform and provide quality and safe care with families as experts in their care and full partners in safety.

About the Author

Sonia M.C. Pagura was formerly senior director of Quality, Safety and Performance at Holland Bloorview Kids Rehabilitation Hospital and is now the director of Quality, Safety, Risk and Patient Relations at Niagara Health.

Laura Oxenham-Murphy is interim director of Quality, Safety and Performance at Holland Bloorview Kids Rehabilitation Hospital.

Diane Savage, MSW, RSW, is vice president of Programs and Services at Holland Bloorview Kids Rehabilitation Hospital.

Adrienne Zarem is a family leader at Holland Bloorview Kids Rehabilitation Hospital and chair of the Family Leader Accreditation Group.

Alifa Khan is a family leader at Holland Bloorview Kids Rehabilitation Hospital and vice chair of the Family Leader Accreditation Group.

References

Accreditation Canada. 2015. "The Quemtum Program Update. Accreditation Canada Client Portal, Access Resources." Retrieved March 8, 2018. <https://www3.accreditation.ca/OrgPortal/Node_AddResources.aspx>.

Barrineau, P. and J.D. Bozarth. 1989. "A Person-Centered Research Model." Person-Centered Review 4(4): 465–74.

Canadian Patient Safety Institute. n.d. "PSEP Canada Curriculum." Retrieved March 8, 2018. <http://www.patientsafetyinstitute.ca/en/education/PatientSafetyEducationProgram/PatientSafetyEducationCurriculum/Pages/default.aspx>.

Carman, K.L., P. Dardess, M. Maurer, S. Sofaer, K. Adams, C. Bechtel, et al. 2013. "Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies." Health Affairs 32(2): 223–31. doi:10.1377/hlthaff.2012.1133.

Gask, L. and P. Coventry. 2012. "Person-Centred Mental Health Care: The Challenge of Implementation." Epidemiology and Psychiatric Sciences 21(2): 139–44.

Hughes, J.C., C. Bamford and C. May. 2008. "Types of Centredness in Health Care: Themes and Concepts." Medicine, Health Care and Philosophy 11(4): 455–63.

Leplege, A., F. Gzil, M. Cammelli, C. Lefeve, B. Pachoud and I. Ville. 2007. "Person-centredness: Conceptual and Historical Perspectives." Disability and Rehabilitation 29(20–21): 1555–65.

Slater, L. 2006. "Person-centredness: A Concept Analysis." Contemporary Nurse 23(1): 135–44.

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