Digital Pharma: UCB’s online epilepsy community
pharmafile | February 8, 2010 | Feature | Medical Communications, Research and Development | PatientsLikeMe, UCB, community, digital pharma, digital pharma research, patient information
UCB has launched an online community for US epilepsy patients to record ‘real-world’ experiences of the condition.
In addition to providing disease information the company hopes its partnership with PatientsLikeMe will also improve drug safety and ultimately lead to advances in epilepsy treatments.
It’s not the first such pharma-patient community, as the ePharma Rx blog points out (citing examples from Novartis and Johnson and Johnson), but it’s refreshing to see a company that doesn’t try to reinvent the wheel and goes where patients go.
So far the epilepsy community has just over 400 patient members since officially launching two weeks ago, though some of the more established PatientsLikeMe communities number their members in the thousands.
In common with PatientsLikeMe’s other communities, the new epilepsy community will allows members to create profiles that record and share their treatments and symptoms – in this case focusing on seizure type, frequency and severity.
Having created a profile on the site, epilepsy sufferers can then chart their health over time and see how they’re doing compared to others with the condition through its “openness philosophy”.
“When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time,” explains the PatientsLikeMe website.
Patient-focused research
UCB has ambitious plans for the partnership and has outlined a number of research projects in the pipeline, including one that takes aim at the spectre of adverse events – long the cause of pharma caution on any form of social networking.
The company will run a drug safety programme within the community that will capture adverse events associated with UCB epilepsy products and then report them to the FDA.
One project already underway is built around collecting anonymised data from online clinical surveys that participating epilepsy patients agree to share.
This will be used to measure patients’ quality of life (including cognitive, social and physical function). Initial results from a 60 patient test run that began in November last year found patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).
UCB’s chief medical officer Iris Loew-Friedrich said: “We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”
A European perspective
Although a US initiative, the PatientsLikeMe model attracted praise – and a note of caution – last year from the European Commission’s technology advisers.
The Joint Research Centre’s Institute for Prospective Technological Studies featured PatientsLikeMe as a case study in their ‘social computing’ report.
It saw PatientsLikeMe members taking over traditional health support roles, such as giving advice, that were hitherto the province of healthcare professionals and noted that the PatientsLikeMe model enables patients to “feel more empowered to gain control over their illness”.
They were more cautious about the community’s threat to users’ privacy. Although not required to do so, patients can choose to enter comprehensive data into the site, such as their age, where they live, their symptoms and what medications they are currently taking.
The report noted: “They post not only their own photos but often pictures of their children and spouses too. They add brief autobiographies and describe their conditions in precise detail – including potentially embarrassing details.”
But it concluded: “The most important impact may be that the knowledge of diseases increases as members’ data on their medical condition, symptoms and treatments is collected, translated into graphs and analysed.”
PatientsLikeMe
PatientsLikeMe was set up in 2006, initially with a focus on neurodegenerative disease ALS (amyotrophic lateral sclerosis) and 10% of newly-diagnosed ALS patients in the US now join the community.
It has over 4,000 members, but has been overtaken in size by the multiple sclerosis community, which also attracts 10% of newly-diagnosed patients but whose membership now runs to nearly 16,000 patients.
In total PatientsLikeMe has 40,000 patient members across nine disease communities and is working with many top 20 pharma companies, but UCB is the first one to launch a patient community on the site.
Announcing the collaboration last year Heywood said it would “turn up the volume of the patient voice in companies who are committed to hearing it and working toward better treatments and better care”.
Dominic Tyer is web editor for Pharmafocus and InPharm.com and the author of the Digital Pharma blog. He can be contacted via email, Twitter or LinkedIn.
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