Social media channels help UCB educate, support Parkinson's community

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By Mia Burns (mia.burns@ubm.com)
UCB shared two poster presentations at the 2013 World Parkinson Congress in Montreal featuring key Parkinson’s disease patient support programs aimed at providing educational support through social media and other tools. The company sponsors Parkinson’s More than Motion and the Parkinson’s Well-being Map. Earlier this year, UCB partnered with Forrest Gregg, a Pro Football Hall of Fame player and coach diagnosed with Parkinson’s in 2011. Gregg discussed at WPC how Parkinson’s has impacted his life.
Parkinson's More Than Motion launched in April 2012 for U.S. audiences with the design of educating patients and caregivers that Parkinson’s disease is more than just a movement disorder. The message is delivered via a variety of multi-media and social channels including the community’s Facebook page, the Parkinson’s Well-Being Map, the Parkinson’s More Than Motionmagazine, appearances at Parkinson’s disease advocacy events and medical meetings, and a video reality series documenting the lives of Parkinson’s disease patients.
The Parkinson’s Well-Being Map was developed as a visual dialogue tool to support people with Parkinson’s disease to monitor their condition and to facilitate communication with their healthcare professionals. It was developed in consultation with people with Parkinson’s and their caregivers, and in collaboration with the European Parkinson’s Disease Association, The Cure Parkinson’s Trust, and the Federacion Espanola de Parkinson.
Andrea Levin, associate director, PR& communications, UCB told Med Ad News Daily, “We’ve gotten a lot of great feedback. Parkinson’s disease can be a very isolating disease. You feel alone. You may not feel like you have someone that you can talk to, and in some cases people may be housebound. You may not always be able to go out to be able to do the things that you want to do. One person mentioned this to me that ‘It is nice that there is a community online on Facebook that I can go to and share with other people and talk to them.’”
“The Parkinson’s More Than Motion Facebook page is a helpful resource for those interested in learning more about PD,” said Gregg. “The online community invites people with PD, their families, friends, and caregivers to add their voices and join the conversation about the range of PD symptoms. Continuing to raise awareness about PD and the significant impact it can have on individuals as well as on families is important to improving overall PD care.”
For an at-a-glance visual representation of a patient’s disease status, UCB says that the Parkinson’s Well-Being Map consists of a radar chart with eight radial axes, each representing a functional domain: sleep disturbances, attention/memory, digestion and the gut, movement, bladder and sexual function, pain, mood, and other non-motor symptoms. Parkinson’s disease patients rate how frequently they experience symptoms on a scale of 0–4 (never, occasionally, sometimes, often, and always).
“The great interest in the Parkinson’s Well-Being Map from people living with Parkinson’s over the last 12 months has demonstrated the need for a simple aid to help people record and communicate the many symptoms they experience to their healthcare teams,” said Lizzie Graham, director, fundraising and global communications, European Parkinson’s Disease Association. “Feedback from users is helping us to enhance the Map and make it even more user friendly.”
UCB highlights educational support programs for people living with Parkinson's disease at the World Parkinson Congress