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The Lilly Clinical Open Innovation (LCOI) blog, like much of the work we do in innovation, started as a thoughtful experiment. We believed that a blog would provide a great opportunity to openly explore clinical innovation topics and drive discussions around improving the patient experience. So in March of 2012, we launched the LCOI blog with the publication of our first post.
What was initially an experiment has turned into a wonderful and rewarding success! Since that first blog post over three years ago, we’ve published over 210 additional posts, while continuing to learn and evolve along the way. We’ve had many fantastic discussions with you, our audience, about how to improve the clinical trial experience for patients, meanwhile speeding innovation and scientific discovery. And we’re just getting started.
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.
Our most rare or unique qualities can often be our greatest strengths, but when it comes to disease, rarity is a tremendous challenge. A rare disease, also known as an orphan disease, is any disease that affects a small percentage of people. In the United States, a disease is considered rare if it affects fewer than 200,000 people at any given time. According to the National Institutes of Health (NIH), there are more than 6,800 rare diseases. Though each of these diseases are rare, having a rare disease of some sort is not. Approximately 30 million Americans, or almost one in every 10 people, suffer from a rare disease.
Living With a Rare Disease
The numbers cited above are interesting, but they don’t tell the whole story. The rest of the story relates to the daily struggles of rare disease patients and their support networks. Rare disease symptoms vary even among patients suffering from the same disease. This symptom variability, combined with lack of scientific understanding and awareness, can lead to delayed diagnosis and difficulty accessing treatment. Patient quality of life is severely affected by the “loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”
“The culture we will live in next month is a direct result of what people like us share today. The things we share and don’t share determine what happens next.”
~ Seth Godin
In a recent post on his blog, successful marketer and entrepreneur Seth Godin says that we are what we share. He believes that sharing our stories and ideas takes courage, and that it is “a generous way to change your world for the better.”
The world of clinical trials is one that still could use some change. Many trials struggle to recruit patients, which hinders our ability to get important treatments to patients in a timely manner. The reasons for struggling enrollment are complex, but the root cause is often a lack of awareness. As an industry, we’ve undertaken various initiatives to increase awareness, but these initiatives have had limited impact to date. And maybe that’s because it’s not us who potential trial participants most want to hear. Instead, maybe it’s fellow patients.