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.
Reindeer Beagle by Mark Evans is licensed under CC-BY-2.0
Thank you to everyone who has made 2014 such a wonderful year! We have thoroughly enjoyed the conversations with you all and truly value your perspective. The Lilly Clinical Open Innovation (LCOI) team looks forward to continued interaction with you in 2015.
As we bring this year to a close, we’ve had some time to review our recent work, some of which we previously shared here on our blog. We sponsored a Patient Engagement App Challenge, which eventually led to the LVJJ website. The LVJJ website is a pilot project to improve how we present information to patients and caregivers on study websites. We’ve also progressed on our target profiles project, which is aimed at building a consistent framework for clinical trial eligibility criteria. And we created the Lilly Innovation Site Advocacy Group, providing us with access to great feedback from research sites.
People are inherently social – in all walks and aspects of our lives. This includes patients and patient advocates and their participation in healthcare. Individuals, whether they meet at a conference or have built bonds based on their shared experiences with their disease and treatments, are connected like Legos.
There are many social networks where patients interact online. As we examine below, data scientists and researchers are using publicly available posts on Twitter in new ways.
Sick? Tweet about it!
For those who aren’t feeling well, they often turn to their mobile phone or computer and tweet about being under the weather. Researchers at Brigham Young University are paying attention and have parsed tweets and their location data to help entities tracking disease find out where flu symptoms are popping up and where the disease might be headed next. In addition, folks at MappyHealth have built out the same concept to include the trending of a variety of diseases in different regions of the world!
By utilizing Twitter data and location, those involved in disease management can monitor, in real-time, the current state of an outbreak and thereby develop intervention steps to better manage an epidemic – influenza in this case.
Twitter as a discovery tool
Twitter might be the perfect medium for finding conversations amongst patients. Here’s why: More…
When it comes to terms we use at Lilly COI, “patient advocate” is one of those we’re using more and more, and have come to treat with the utmost respect.
Realizing not everyone might know what a patient advocate is, we’re going to take this post to share on the important role a patient advocate fills, how they are helping to improve health care, and – more specifically – are impacting our effort to transform drug development.
By definition, a patient advocate is an individual or organization that represents patients to ensure they are getting the care from the health system, helping them through the complicated processes involved with getting the *best* care possible. (source: Wikipedia and APHA)
Why are patient advocates necessary?
Unfortunately, navigating the health care system is difficult, and assuring that individual rights and public good is preserved sometimes takes someone fighting for your interest as a patient. In the United States, complications come from bureaucracy either when dealing with government programs, corporations, navigating insurance processes, forms and endless loops, or even finding out which clinical trials you might qualify for.
Here at Lilly COI, we’ve had the opportunity to meet some amazing patient advocates, who live a passionate, vocal life in service of patients everywhere.
Pharma needs to stand up and listen to advocates