Guest Post by: Beverley Pomeroy, Lisa Ridgway, Patient Partners
Our names are Beverley Pomeroy and Lisa Ridgway and we are patient partners and hosts of a new podcast called SPORcast. Both of us have lived experience as caregiver and patient and we reside on the west coast of British Columbia.
Lisa comes to her lived experience through being a stem cell donor twice to her older brother who had a blood cancer. Unfortunately, Lisa’s brother succumbed to his cancer and that experience sent Lisa to a dark place emotionally. Lisa sought out the support of a unique treatment at the University of Victoria (UVIC) and has been a mental health advocate ever since.
Beverley’s story on the patient and family side of care began in 2000, when her daughter, Sophia, was born with a rare complex chronic condition that encompassed the majority of her organs and systems. The next 16 years involved full on care giving and supporting Sophia through her disease progression in our complex health care system. Sophia passed away January 1st, 2017 at age 16.
We are patient partners with a variety of organizations across Canada; most notably, we partner with the BC SUPPORT Unit, stemming from the Canadian Institute of Health Research initiative called the Strategy for Patient-Oriented Research, or “SPOR”.
We, Beverley and Lisa, co-lead several research projects that resonate with our lived experiences and sense of purpose. We also sit on the Provincial Patient Council and are involved in a variety of advisory roles.
In the spring of 2019, we attended Alberta’s Annual SPOR conference and met the Sickboy Podcast team who were presenting on and teaching about podcasting. After some in-depth conversations, we decided to create our own podcast to highlight Patient-Oriented Research (POR) from our perspective. Not only did we want to learn more about POR, but we also felt it was (and is) important to help extend other patient partners’ reach and build the capacity of researchers.
We are doing many things right in regard to patient engagement and patient centredness in our health care system. However, one thing we both believe strongly needs to evolve is leadership; how do patient partners lead initiatives and health care organizations around the country? What does that look like?
Initiating SPORcast and sparking that conversation is one way we felt we could model what patient leadership could look like. We also believed SPORcast would contribute to creating people-centred care by spurring parity for patients and families in the health care system.
Some of our roadblocks in partnering with others are two-fold; first, due to a small pool of experienced patient partners, they burn out. Furthermore, we lack a true model for retention and sustainability in this area. Second, while health care organizations are willing to include patients and families in the conversation, they are still skeptical of patient partnership and whether it serves a purpose in a meaningful or measurable way.
Neither of us have the answers to these complex questions. However, we remain optimistic and trust that our curiosity and conversations will guide the people-centred care and patient engagement movements toward that inclusive, safe, high-quality care we all deserve.
SPORcast launched on September 5th and we encourage readers to listen to some of the amazing guests who have shared their time and wit on our podcast. Guests like the provocative Dr Erin Michalak, the resilient Hélène Campbell, and the brilliant Dr Stirling Bryan are awe-inspiring.
Listen live to Patient Leaders: Helene Campbell, a Double Double Lung Transplant Recipient and Patient Leader with Health Standards Organization episode.
You will find episodes on consumer sovereignty, patient engagement, capacity building and, of course, patient leadership.
If you or someone you know would love to share stories or findings and feel a calling to help, then you might make a great guest on SPORcast!
Get in touch with us! We encourage you to get involved in yours and your family’s care, and by extension, positively impact health outcomes for everyone.