01 Mar Interview with Kevin Fowler

The Power of Social Media and Patient Engagement

An interview with Kevin Fowler

In August of 2004, Kevin Fowler received a pre-emptive kidney transplant,  and was able to avoid dialysis completely. With a family history of polycystic kidney disease (PKD) he knew he would have to remain an active and engaged patient for the rest of his life.

Today, Kevin is on the board of directors for the American Association of Kidney Patients, serves on the Kidney Advocacy Committee for the National Kidney Foundation, and is a member of the Kidney Health Initiative, Patient  Family and Partnership Council. Kevin actively uses social media to share his experience as a kidney patient and his 30 years in the pharmaceutical industry to engage in patient advocacy. Below, we asked him five questions about how social media can be a beneficial tool for those with kidney disease.

When did you start using social media?

About two years ago, I started using Twitter intentionally as a way to represent my voice in health care, especially in kidney disease. I knew that I could use social media to strategically position myself in a way where I could really be heard, and to potentially have my patient voice heard during this period of healthcare transformation.

What is the biggest benefit to using social media?

First, social media provides an opportunity for patients to use their voice constructively. On social media, patients can interact with industry leaders and help contribute to the way kidney care is being designed.  Social media allows the patient voice to be present, when so often the voice of the patient is absent in decision making. Also, social media provides an opportunity for a patient to learn more about what’s going on in the kidney care industry and healthcare.

Why would you recommend using social media to a fellow kidney patient?

By sharing your voice constructively, you can help providers and leaders design treatments and policies with the patient in mind.

How has social media opened any new doors for you?

I spoke at the HIMMS17  [Healthcare Information and Management Systems Society] conference this year and used Periscope to record my talk. Through social media, I have also built relationships that have led to volunteer opportunities. Most importantly, I’ve built credibility for myself and have been exposed to and learned from other perspectives.

How has being an engaged patient changed your healthcare experience?

I encourage people to consider their priorities. I think for anyone who has had a major health experience or witnessed one firsthand, their health becomes their top priority. I saw my mom suffer on dialysis and because of a pre-emptive kidney transplant I didn’t have to undergo dialysis.  I’ve been given a gift and I want to hold onto my gift for as long as possible. Social media is a platform that allows me to share my unique perspective with other patients, providers and thought leaders in the industry.

To connect with Kevin, follow him on Twitter: @gratefull080504
Watch Kevin’s presentation at HIMMS here