Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes

Introduction

In an effort to improve safety, quality and patient care, Canada’s largest, public health system, Alberta Health Services (AHS), has been working towards engaging patients and families at all levels of the organization since its inception in 2008. ¹ The AHS is now comprised of over 109,000 employees and is supported by more than 10,000 physicians and 13,900 volunteers to meet the needs of 4.2 million Albertans. ² There are a number of internal and external drivers promoting a cultural shift in AHS toward Patient and Family Centered Care (PFCC) as a model that seeks to involve patients and families in their own healthcare and treatment decisions. ³ An internal driver is AHS’ organization-wide Patient First Strategy which is intended to work to improve both patient and family experiences and PFCC practices, such as patient engagement. ⁴ Accreditation Canada acts as an external driver, by embedding client and family centred care into required organizational practices and standards. ⁵ One way that AHS complies with these standards is through patient and family volunteers trained and engaged as ‘advisors’ who provide the patient and family perspective in decisions in healthcare system planning, research, design, and evaluation. Patient and family advisors draw on their health care experience as a patient, family member, or caregiver to suggest improvements in quality, safety, and patient care practices within AHS.

The benefits of introducing patient and family advisors include enhanced collaboration among physicians, clinicians, leaders and patients and families and a cultural shift from “doing for” to “doing with.” ^6,7 The AHS strives to promote a modified co-design approach as best practice, without limiting participants to the methodology of the experience-based co-design approach. ^{8 –10} Rather it encourages staff and patients and families to reflect on their experiences, work together to identify improvement priorities, devise prototypes, and implement and evaluate changes. ^{11 –13} This approach brings patients, families, and staff together to collaborate throughout all the stages of a quality improvement process. ¹⁴ It challenges traditional hierarchies that place patients as passive recipients of healthcare and instead acknowledges that patients and families have unique experiential knowledge about their health condition and the healthcare system. ^10,15 The insights shared by patients and families transform outcomes by bringing to light unexamined issues and new ideas that “challenge existing conceptual frameworks, discourses, and decision-making pathways.” ¹² Central to this approach of engaging patients and families as advisors within the healthcare system is the recognition that patients and families want to participate in decisions that affect their care. ^16,17

This article briefly describes the role and growth of patient and family advisors and advisory councils in quality improvement in AHS and the participation of patient and family advisors in research initiatives through AHS’ Strategic Clinical Networks^TM (SCNs^TM) It also describes recent efforts to build AHS’ capacity to engage with patients and families by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research (PaCER) internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for healthcare leaders about engaging patients and families.

Patient and family advisors in AHS

There has been a rapid growth in the number of patient and families engaging with AHS. It is estimated that the number of patient and family advisors has increased 5-fold over the last 2 years. Currently, there are over 600 patient and family advisors formally partnering with AHS. Patient and family advisors are recruited from across the province and involved at various levels within the organization. As described by other healthcare organizations, patient and family advisors partner on various types of quality and safety improvement projects, councils and committees related to their healthcare experience. ⁶

Patient and family advisory groups

The growth in the number of patient and family advisors has been driven by an increase in patient and family advisory groups in AHS. Patient and family advisory groups have been identified by the Institute for Patient-and Family-Centered Care as an essential element for facilitating a cultural shift toward PFCC. ^18,19 Patients and family advisory groups identify opportunities to improve quality, safety, and the patient experience by sharing their experiences. Many of the patient and family advisory groups in AHS represent specific patient groups. These groups give AHS the opportunity to form strategic and sustainable partnerships with patients and families. Some of the key patient and family advisory groups and the work of these groups in AHS are described below:

Similar to other modern healthcare organizations, the pediatric sites with AHS, the Alberta Children’s Hospital (ACH) and Stollery Children’s Hospital, were the first to bring on patient and family advisors and have well established patient and family advisory groups. ²⁰ Recently, the PFCC steering committee at ACH developed an engagement framework to coordinate the patient and family advisory work on the site and sustain long-term growth. This includes a PFCC steering committee, family advisory council, child and youth advisory council, and patient and family network with over 175 active members. ²¹ The Stollery has a similar model. The high level of patient engagement has resulted in these 2 sites outperforming the adult sites and other AHS child-focused sites on the Hospital Consumer Assessment of Healthcare Providers and Systems survey, which is the only national standardized patient experience survey. ²²

Measuring the impact of patient and family engagement

Although the growth of patient and family engagement in AHS has bought some measureable benefits for staff, patients, and families, much of the impact of patient and family advisors on the organization is anecdotal or unknown. Until recently, patient and family engagement activities in AHS were only measured on an ad hoc basis. Some sites and project teams saw the benefit from patient and family engagement and evaluated their efforts. However, these evaluations did not use standard tools that would allow data to be analyzed provincially. Standard survey tools have since been developed and piloted. They draw on internal AHS evaluation expertise and external sources. ^25,26 The result has been a collection of both standardized and tailored survey questions that can be used by all groups working with patient and family advisors. Survey data will be gathered on-line into central databases allowing AHS to: (1) track engagement and experiences of advisors and organizational groups partnering with them across the organization, (2) determine the value of integrating patient and family advisors, (3) develop a better understanding of where improvements can be made, and (4) provide a demographic breakdown of patient and family advisors to ensure they reflect the populations AHS serves. ²⁷ Through the development of these survey tools, AHS hopes to contribute to broader endeavors in the field to operationalize the value of patient and family advisors and thereby better understand the impact of patient and family engagement. ²⁸

Patient and family engagement in research and planning

Involving patients and families in the research process rather than simply as subjects of research has shifted research priorities to better serve the needs of patients and families and improve the design, quality of data collected, and analysis of results. ^29,30 Patient engagement research has been defined as “collaborative research that is done by, with and for patients to inform health care and health research decisions and questions.” ³¹ The best methods to achieve patient engagement in research are still largely undefined; however, patients and families can be included in various stages of the research cycle from the development of the research question to data collection and analysis. ³⁰

The AHS, through the SCNs, has integrated patients and families into the research process and provincial design of services. The SCNs bring together academic researchers, community members, clinicians, government and patients and families to transform health care in Alberta through evidence-based planning and implementation. ³² Each SCN aims to include at least 5 patient and family advisors as equal, voting members on their core governance committees, where they help to bring the patient and family perspective to discussions regarding the vision, mission, and priority areas for each SCN. Patient and family engagement in the SCNs has grown significantly over the past 5 years. Seventeen patient/family advisors including patient researchers were engaged during the SCN launch year in 2012, and the number of patient and family advisors involved in the SCNs has grown at an average rate of 48% per year. To support the patient and family advisors volunteering in the SCNs, a support council called the Patient Engagement Reference Group (PERG) was formed in 2012. The PERG brings patient and family advisors across the SCNs to discuss challenges and network, receive education and training, and consult on SCN work. Patient and family advisors have been valuable partners within research activities and on projects. They have contributed to the development of a safe surgery checklist (Surgery SCN), key performance indicators for the Maternal, Newborn, Child, and Youth SCN and an infographic to educate patients and families about diagnostic imaging in the emergency department (Emergency SCN “Choosing Wisely” project). To more clearly understand the value of having patient and family advisors involved in research, evaluation of their experiences and impacts is essential. ^33,34 Using a similar survey approach to patient and family advisors engaged in quality improvement, the evaluation process with patient and family advisors involved in the SCNs has also started.

Training for patient and family engagement

The exponential growth of patient and family advisors in AHS has highlighted the need to strengthen the structures to support patient and family engagement and the staff who liaise with them. Orientation training for patient and family advisors partnering in AHS has been inconsistently offered across the organization and has not included training for staff liaising with patient and family advisors. This has led to staff feeling unequipped to partner with patients and families and created a barrier for patient and family advisors to partner with different groups across the province. To grow AHS’ capacity to partner with patient and family advisors three standardized training modules have been developed. These modules draw from concepts from the International Association for Public Participation, co-design literature, other leading organizations practicing patient and family engagement and from internal expertise in AHS. ³⁵ Module 1 introduces the key roles and responsibilities of patient and family advisors in AHS, module 2 introduces the key roles and responsibilities of staff liaisons in AHS, and module 3 introduces concepts, theories, and practices to meaningfully engage with patients and families at the organizational level. These modules will be co-presented with experienced patients and family advisors and staff liaisons to provide peer-to-peer training and share experiential learnings related to the content. Offering standard training will cultivate shared expectations and understanding of how to engage with patient and family advisors in AHS in meaningful ways.

In addition, the SCNs have supported the development of the innovative Patient and Community Engagement Research PaCER internships program that trains patients and families in qualitative research methods. The PaCER internship program has increased the capacity of patient and family advisors engaged in the SCNs to participate and bring the patient perspective into research, and discussions with clinicians, researchers and decision makers. ³⁶

Patient engagement learnings for healthcare leaders

Over the last 8 years, similar to experiences of other organizations engaging with patients and families, leadership support has been instrumental in shifting the organization toward a culture of PFCC. ^15,10 Some of the key enablers of this culture change, which has accelerated the growth of patient and family engagement, include:

Embedding PFCC into organizational strategies and business plans. This keeps all leaders focused on patient and family engagement.

Conclusion

The AHS has made a commitment to co-design and learn from patients and families to improve quality, safety, research, and the patient experience. The AHS recognizes that patients and families, as users of the healthcare system, have valuable experiential knowledge that is critical for ensuring quality care. The growth in patient and family advisory groups in AHS has integrated patients and families into AHS’ decision-making processes and made it easier for staff to partner on research and quality improvement projects. The AHS will continue to build its capacity to engage with patients and families by introducing standard patient engagement training and by developing tools to measure the impact of patient and advisors on AHS. In doing so, AHS hopes to contribute to advancements in patient and family engagement in Canada.