My Transition from Patient to Patient Advocate

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Virna Elly, a patient with Type 1 Diabetes and Chronic Kidney Disease, tells how becoming her own spokeswoman led to a life of educating others with chronic conditions and inspiring them to leverage every available resource to create a healthier life. The roots of her work in patient advocacy are in her childhood.

My patient story began back in 1980 when I was an eight-year-old diagnosed with Type 1 diabetes. I was the only person with diabetes in my school, and I had no friends or family with diabetes. I had to learn to speak up about my condition and educate others. I remember asking the teachers on field trips to carry candy, and I had to explain why. I was my own spokeswoman. It was a natural development.

As an adult, I developed other conditions on top of diabetes, including hypertension and hyperthyroidism. When I found out that my kidneys were failing, I kicked into overdrive. There was no precedent in my family or group of friends, and I had to learn to be a strong advocate for myself. I used the Internet to learn everything I could. Everyone else I knew who was suffering from kidney disease was older, which was isolating. I began following bloggers with whom I could relate, which was both uplifting and comforting. I knew I needed to become a voice and effect change.

By 2004, my kidneys failed, and I went into End Stage Renal Disease (ESRD). I walked into the hospital and was almost immediately inserted with an emergency catheter to begin dialysis. There was a severe lack of communication and education about my disease and care options. If I had been an older patient, I might have had a different outcome. That changed my outlook; I knew I had to do something.

When I was suffering from chronic kidney disease, I was on disability and wasn’t working. I began volunteering at an advocacy organization and speaking with members of Congress. I got to see how Congress handles patient information, and I now have a better appreciation of what goes into protecting patient rights and improving health care. I try to insert myself into conversations with health care leaders as much as possible, and I even spoke about my patient experience at the 2012 QualityNet Conference, which is sponsored by the Centers for Medicare & Medicaid Services’ Quality Improvement Organization Program.

I realize that health care leaders and providers sometimes forget that every patient is different. When doctors meet with patients, they don’t see us in our everyday lives. Physicians must view patients holistically to understand our personal preferences and tailor our care. The health care community needs to start utilizing its most valuable resource: patients.

During my early days with chronic kidney disease, I asked very direct questions. Some providers were extremely forthright, asking me questions and involving me in care decisions; they are an example of what health care should be – participatory. Patient engagement helps improve the health care experience for both the patient and the provider.

Patients need to take responsibility for their care. They need to ask questions and understand what they are able and willing to do. They should use all available resources, including social media, to make the shift from passive listeners to active participants in their health care and in the decision-making process.

My advice to patients who are afraid to take the first step is not to be overwhelmed. There are so many resources available in this new digital age. Do what you can, from reading a blog to engaging with influencers on Twitter to speaking at an industry event. Use your voice if you can. Patients have the ability to empower each other and improve the health care system.

Follow Virna on Twitter at @VirnaElly and visit her

By Virna Elly