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A mere five years ago, there were only a handful of patient partners at BC Renal, the organization responsible for coordinating and funding the delivery of kidney care services across the province. Their roles were generally limited to ad hoc feedback, and opportunities for engagement were inconsistent. But fast-forward a few short years, and it’s an entirely different story. BC Renal’s patient and family engagement network is thriving like never before – with 139 patient partners registered (25 actively involved), diverse opportunities for engagement available, and patient voices and perspectives prioritized across program activities.
So… what changed? What has BC Renal done in the past five years to grow its patient and family engagement network, and what lessons can other healthcare organizations take from them?
First things first: Build the foundation
When BC Renal established engagement as a network-wide priority, the next step was to develop a comprehensive framework to guide meaningful and effective engagement. Patient partners were central to this work, with patient partner, Dennis McCann, co-chairing the working group (a first for BC Renal). Multiple patient partners also joined health professionals and BC Renal staff in the working group where participants defined a set of principles and a clear structure for engagement. See the graphic below for more:
Using the framework as a roadmap, patient and family engagement at BC Renal shifted from a series of one-off opportunities to a key feature of the provincial program and a formal commitment. Patient and family engagement is supported by dedicated staff and overseen by an advisory committee. Steps have been put in place to ensure patient partners feel well-supported, including formal volunteer orientations, honoraria, access to peer support, education for health professionals on meaningful engagement, and more. This has not only translated to growth in the number of engagement opportunities at BC Renal, but also in enhancing the experience of all involved in those opportunities and strengthening the patient voices in the provincial kidney care network. If you’d like to learn about these processes further, check out this article in Healthcare Management Forum.
When Dennis McCann first joined the BC Renal Palliative Care Committee as a patient partner, its limited opportunities for involvement often left him wondering, “Why am I even here?” But thanks to the committee’s openness to patient input, as well as ongoing patient partner education and collaboration with health professionals, the committee has since blossomed into a space where patient partners like Dennis feel engaged, valued, and able to contribute effectively. If you’d like to learn more about the story, check out this video.
Evaluate progress and the network’s growth
BC Renal routinely gathers feedback with a set of surveys and ensures it’s meeting the needs of everyone involved in patient partnerships. Survey results are then published on BC Renal’s website and shared through newsletters and on social media:
Highlights from the 2023-2024 evaluation:
- Since March 2020, the number of patients and family members in the network has more than doubled from 61 to 139, and 25 are actively engaged in provincial committees or other activities.
- The number of short-term or one-off engagement opportunities has increased, as have engagement roles in languages other than English.
- 100% of patient partners who completed the 2024 survey feel able to express their ideas comfortably, have a clear understanding of the purpose of engagement opportunities, and are confident BC Renal takes their feedback into consideration. 96% are satisfied with engagement opportunities.
Opportunities for improvement include:
- providing more clarity on the engagement process and roles of all involved; and
- providing more guidance to committee leads on communication with patient partners between meetings, and how to navigate difficult discussions.
In the spirit of centering the patient voice, we feel it’s fitting to end this blog post with the words of BC Renal patient partners:
- “I am so impressed by the desire of the BC Renal community to keep improving practice and the dedication to improving patient care,”
- “The energy I draw from the discussions and discovery of new information motivates me in a long struggle with complex health problems.”
To learn more about patient and family engagement at BC Renal and access their resources, check out this webpage or contact patientengagement@bcrenal.ca.
