A near-death experience
What was an uneventful full-term pregnancy and uncomplicated delivery turned critical just three hours postpartum when my healthy newborn baby girl suddenly turned blue in my arms. In a matter of seconds, she was rushed to the neonatal intensive care unit (NICU) to be resuscitated. Little did I know that this was just the beginning of a journey that would change our lives.
My daughter, Ellie, and I were both diagnosed with sepsis caused by Group A Streptococcus. This severe illness required life-saving measures for both of us, including being airlifted from our regional hospital to a larger hospital that could accommodate her critical illness. Ellie spent 21 days in the NICU, received eight lumbar punctures, two blood transfusions, and was put on a meningitic dose of ampicillin via a peripherally inserted central catheter line. These were only some of the many medical procedures she has experienced in her now eighth year of life. But we aren’t the only ones who have been affected by sepsis. In fact, many survivors suffer the consequences of sepsis for the rest of their lives. Sepsis is a life-threatening illness that is caused by the body’s extreme response to an infection. This infection can be bacterial, viral, parasitic or fungal. You can develop sepsis from a urinary tract infection, an infection after surgery, a dog bite, COVID-19 and, like in our case, strep throat.
Every 2.8 seconds, someone around the world dies of sepsis. It affects between 47 and 50 million people every year; in 2017 alone, 11 million deaths were attributed to sepsis. Before this near-death experience, I had no idea what the word sepsis meant. And I certainly didn’t know what the long-term effects would be for my family and me.
Tasked with “selling” the impossible
I am a communications professional. The art of storytelling has always been the crux of my role, a tool for communicating ideas, emotions and experiences. Following our experience with sepsis, storytelling became deeply personal and changed how I viewed my role as a marketer.
I now market information on sepsis – what it is, how to spot it and how to stop it in its tracks. Sepsis, however, is one of the worst “marketed” diseases in the world. Symptoms of sepsis can be like other conditions, making it difficult to recognize and diagnose. Some people may mistake the symptoms of sepsis for the flu or cold without realizing the severity.
Some people may mistake the symptoms of sepsis for the flu or cold without realizing the severity.
Recognizing these challenges and the lack of awareness, I embarked on a journey to learn more, first volunteering as a Patient and Family Advisor for Canada’s first and largest province-wide, fully integrated health system, Alberta Health Services, as well as several research networks focused on the recognition, treatment and prevention of sepsis. Now employed full-time as a Communications Program Manager for a research network, I am tasked with marketing the illness that, if not sold, will have killed 85 people by the time you have read this paper.
Patient partners in health research
I met my first patient partner over Zoom. We chatted about our experiences with sepsis. How it happened, who was affected and how our lives were changed forever. Everyone I spoke with wanted no other person, or loved one, to experience what they had.
Part of my healing came from diving headfirst into the world of patient engagement. My role as a patient and communications professional has come full circle, now bringing more people with lived experience into sepsis research.
The Strategy for Patient-Oriented Research (SPOR) has implemented strategies to integrate patients into research, bringing together patients, researchers, clinicians and policymakers.
Although engaging patients in health research and care initiatives have been around for a decade, the world of patient engagement is evolving faster than the system can support. In most cases, opportunities for engagement remain limited in scope. Most often, patient partners are included only as collaborators as part of end-of-grant knowledge translation activities, rather than being part of the co-design process and in engaging in patient-led research.
Opportunities for patient partners need to reflect increased levels of engagement and training and should include the ability to seek funding, and conduct research. Not just check a box.
Opportunities for Patients Partner Engagement
Patient partners are integral to health research and care. Despite the many initiatives put in place to support patient engagement, like SPOR’s Support Units and Networks, there is still work to be done on how to do this meaningfully and well. This includes listening and learning from those with lived experience to help develop new programs and enhance the ones that already exist.
Being forced into this world of research through a near-death experience has taught me a lot, including the importance and value of our story and experience. I am a communications professional who has experienced sepsis, and I might just be the right person to “market” the disease that kills one person every 2.8 seconds.
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