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.”
Photo by Ryan McGuire from Gratisography.com
At Lilly COI, we remain keenly interested in new tools, models, technologies and approaches to addressing healthcare information challenges and to considering how they might be applied to improve clinical research. Through our online travels, we’ve recently come across Iodine and find some of the concepts within their approach worth sharing.
With thousands of prescription and over-the-counter drugs currently on the market, the process of trying to understand what you’re taking can be intimidating and confusing. The idea of reading all the tiny print on the package inserts can be overwhelming. And oftentimes, doing a Google search doesn’t provide much additional help. The search results can include articles from medical journals, websites that list basic drug information and side effects, and discussion boards where patients share their individual experiences with a drug. How do you find time to sift through all of that and make sense of it?
Similar problems plague the process of finding a clinical trial, and of getting access to easily understandable results of the trial afterward. Finding ways to streamline this information and make it more readily available to people is becoming an area of increasing focus. Companies like Iodine are providing us with some examples of how this can be done.
Photo from Unsplash. By Elisabetta Foco
Each year, thousands of people participate in clinical trials. Much of our recent focus has been on patients enrolling into trials, and what happens once they’re in. But, what about what happens after trial? Patients and caregivers I’ve talked to have indicated that a lot more can be done to let them know that they are appreciated, and to connect them to the larger story of the treatments they are helping to bring into the world.
Data from CISCRP seems to support the anecdotes I’m hearing. They cite a 2008 survey (Getz. The Monitor. September 2008: 17-21.) in which most trial participants said they felt they were “no longer valued” by researchers. This is a shame. Advancements in drug development would not be possible without these volunteers. None of them should leave a study feeling unappreciated.
In fact, leaving them feeling this way can have further consequences. A different survey said that “most study volunteers choose not to advocate clinical research among patients who are considering participation.” There could be any number of reasons for this, of course, but leaving them feeling abandoned after the trial ends certainly doesn’t help. Actually, I would argue that delivering a great experience is the best way to boost enrollment in the future.
So, what can be done?
“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.