Patient & Family Engagement in Alberta Health Services
PaCER Director Nancy Marlett, PhD recently contributed to an article on patient engagement titled "Patient and Family Engagement in Alberta Health Services: improving care delivery and research outcomes."
"Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS Strategic Clinical Networks™. It also describes recent efforts to build AHS patient and family engagement capacity 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 advisors on AHS. And finally, this article provides key learnings for health leaders."
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Bladder cancer is the 5th most common cancer in Canada. There is a lot of clinical research about bladder cancer but little has been published to date about what a patient really experiences when going through a journey with this disease.
Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. This includes many inititatives such as supporting the creation of the innovative Patient and Community Engagement Research (PaCER) Internship training program.
Concussions are a growing health epidemic among youth. Current concussion research has produced a great deal of knowledge about adolescent experiences of treatment and recovery; however, these studies have focused largely on clinical information and analysis provided by healthcare providers.
We were PaCER Interns from Wellspring, a cancer wellness centre built upon social support who wanted to understand how and why it worked. This is our story of how Salutogenesis changed our initial description of WS into a Salutogenic theory of community wellness.
As PaCER Interns, we realized that we could do research to pry open the lid on a shared but hidden journey through chronic illness. This is our story of how we were able to overcome the biggest barrier of all in patient engagement – seeing ourselves and being seen through our medical experience.
On 14th October PaCER is holding a focus group in Calgary with patients who are bladder cancer survivors.