ePatients Tweet Their #ChronicLife 1

Chronic Life Word Cloud

In the early 90s, Britt Johnson‘s life was like that of any healthy young girl. Until suddenly, it wasn’t. In the summer of 1992, Britt came down with strep throat for the first of what would be many times. Over the next several months, Britt encountered one health setback after another. Months of health setbacks turned into years, during which time Britt had repeated contact with the healthcare system. This contact was not always positive. Britt received a series of misdiagnoses and was even accused of being a hypochondriac. Finally, at the age of 20 Britt was diagnosed with Psoriatic Arthritis. Britt’s disease has continued to progress, and her diagnosis has been amended to Spondyloarthropathy and Rheumatoid Arthritis.

The Birth of #ChronicLife

Britt JohnsonToday Britt, aka The Hurt Blogger, is one of a growing number of epatients sharing their experiences online. Britt actively blogs and tweets, in addition to serving as an epatient advisor for organizations like Medicine X. On January 28 of this year, Britt published a blog post in response to a conversation that had haunted her since November of 2014. Britt was having a lovely dinner with two friends, one a fellow chronic disease patient and the other a healthcare professional familiar with chronic disease. Britt would have expected both friends to understand her daily struggle. And then this happened:

In the midst of raucous debate and laughter worthy of my future wrinkles, I mentioned that I was exhausted from my disease and apologized for my fidgeting, it was due to pain and not disinterest in the conversation. I took Percocet. One of the friends turned to me in utter shock, asking what was wrong?! Was I sick? Was I hurt? Why was I taking medication?!

My shock in turn said, “When do I NOT take medication?!” My friend went on to say quite innocently, that I looked so beautiful and lively, that they thought all this time, that my disease was controlled. In that moment I questioned everything I had been doing as far as advocacy. If this friend did not understand my disease, how possibly do others? It was suggested I film my daily life, because in all honesty, it is a mystery.

As a result, Britt hatched an experiment, which she detailed in a blog post. Over 48 hours, Britt would live tweet the daily reality of her disease using the Twitter hashtag #ChronicLife. This experiment would give people an unedited glimpse into Britt’s world, hopefully providing them with a better appreciation for the daily struggle that she and other patients faced. As part of this experiment, Britt promised to:

  • Tweet every time she felt pain
  • Share the mental health aspects of her disease
  • Share all the medication she takes
  • Share all the devices she uses

A Sample of Britt’s #ChronicLife Tweets

For your convenience, a small sample of Britt’s tweets are embedded below. But if you have a few minutes, those minutes would be very well-spent by viewing Britt’s full 48 hours of #ChronicLife live tweeting.

The #ChronicLife Movement

Britt’s experiment, though exhausting for her, was a resounding success. People were not only supportive of Britt, but they also participated in her experiment. Other chronic disease patients began tweeting their own #ChronicLife in solidarity, which snowballed into a #ChronicLife Twitter movement. Meanwhile, people without much exposure to chronic disease learned from and interacted with these patients, gaining a deeper appreciation for their daily realities.

And while helping others, Britt had also helped herself:

Because of #ChronicLife, I no longer feel like I am hiding in the shadow. I’m standing in the sunlight, arm in arm with my fellow chronic patients. I no longer have fear over sharing any moment of my #ChronicLife. We have the ability to educate the wide world of healthcare. I lifted the veil not just for others, but for myself. I feel free.

Visualizing #ChronicLife

We at Lilly Clinical Open Innovation (LCOI) felt touched and enlightened by these stories, so we decided to capture them visually using a word cloud (seen at the top of this post). To create our word cloud, we used the tweets of Britt and the people Britt included in her Chronic Life Twitter List. Using the Twitter Application Programming Interface (API), we pulled their tweets, essentially filtering for those that included #ChronicLife and occurred during the 48-hour experiment. Once we had our data, we then pasted it in a tool called textisbeautiful.net to create the word cloud.

We did very little to curate the data provided by Twitter, with a couple of exceptions. Because all of the tweets included #chroniclife in them, the word cloud featured #chroniclife extremely prominently. We felt that including #chroniclife in the word cloud distracted from the other words and didn’t add value, so we removed it. In addition, we removed all medication names to keep the focus on patients, rather than feature or promote particular drugs.

We enjoyed learning from the rich perspectives and insights of #ChronicLife patients, and we hope you did as well. This experiment is a wonderful example of the collective power and change that can be generated using social media. A simple Twitter hashtag allowed patients to be heard, while educating clinical researchers, healthcare professionals, and the general public. What did you find valuable about the #ChronicLife experiment? Any aspects of it you find particularly interesting? Did anything surprise you? Let us know in the comments or on Twitter.

One comment

  1. Pingback: ePatients Tweet Their #ChronicLife | CLINYS – operational excellence for life science companies

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