May 14, 2010. I woke up to the room spinning. That day is forever etched in my mind. Firstly, because of the unfamiliar, sickening vertigo that rippled through my body, rendering me helpless. Secondly, because this symptom led to a cascade of events that four days later landed me in the ER diagnosed with a non-malignant brain tumor.
I was 33 years old, a wife and mother of a 4-year-old son. I went from being a routine patient to having to grasp the nuances of managing multiple medications, appointments, and specialists, on top of my own symptoms and fears. I lived 24/7 with the realities of my brain tumor, not just during the few minutes with my healthcare team during appointments. My diagnosis required a new level of coping and self-advocacy. I had to educate myself about new medications and treatments, seek second opinions when my treatment plan changed, and develop problem-solving skills I’d never needed before.
Two years after my diagnosis, my brain tumor doubled in size, causing my brain to swell. I needed emergency brain surgery. Medical error resulted in a delay in diagnosing the severity of my condition. This was pivotal in changing the trajectory of my life, both health and focus-wise. It took me 18 months to recover from the surgery with a resulting brain injury.
My patient experience of medical error evoked strong feelings of anger and grief. As I recovered, this shifted to a passion to inspire people to put their health in their own hands. Having experienced the complexity of healthcare systems, I sought opportunities to collaborate for change and improvement.
I became a patient partner with my healthcare authority, started speaking at local and national conferences about my patient experience, and wrote a book, Two Steps Forward. I found a passionate and like-minded community of patient and health advocates that helped develop my knowledge and understanding of the power of the patient, family, and caregiver voice and its value in collaborating within healthcare.
Since my brain surgery, my laundry list of health conditions, medications, and experiences within the healthcare system have grown and fueled my passion for living my work. I continue to give input as a patient partner and engage in areas I feel offer opportunities for improvement. I now also work with healthcare systems and organizations on patient experience and patient activation. My passion is “the patient" and his or her journey, and what that means to the individual, their families, and caregivers. How we, the patient, experience our healthcare journey at every touch point has tremendous impact on our lives, both physically and emotionally. Who knew 10 years ago that my life would follow this path of lived experience?
The day-to-day and sometimes brutal realities of lived experience are not something that can be found in a textbook. The true essence and value of lived experience is found in the unique insight provided by these individuals. This insight, if authentically sourced through appropriate engagement, can lead to profound change and improvements for patients, systems, and the pharma and life-sciences industries. Profound change does not have to be of massive magnitude but can have a significant impact in my life as a patient. It’s often the small things that count.
For healthcare and pharma to be relevant, the lived experiences of patients and caregivers must be understood and integrated into the big picture, whether through storytelling or engagement activities, innovative technologies, or partnering with patients and their caregivers in other ways.
My patient experience is affected by all interactions across the continuum of my care, from a receptionist’s call to my neurosurgeon’s scalpel to discussions with my pharmacist about my medications. What better questions to ask me, the patient, than “What was your experience?" and “What matters to you?" to truly understand the complexity of the patient journey and how to co-create better outcomes. (PV)
