Last June, Pharm Exec reported about a new online social network for epilepsy sufferers that would allow them to speak about the disease and how it affects their lives.
The big shocker was that this online community was to be established through a partnership with social media firm PatientsLikeMe and biopharm giant UCB, making this the first truly open online forum involving a pharmaceutical company. Sure, plenty of drug firms have dabbled in Facebook, tweeted their corporate reports, and blogged about their canned press releases, but this is the first time a pharma company is getting involved in a truly open community where patients can say whatever they want.
On Tuesday, PatientsLikeMe announced that it has finished beta testing, and is launching the live version of the Web site. Pharm Exec got Ben Heywood, president and co-founder of PatientsLikeMe on the line to find out more about the community.
What have you been working on for the past seven months? Beta testing on the site?
We have a specific process we go through to really understand what the patients needs are for a given disease state, and then building it into our platform, and then iterating on it and learning from the patients.
Industry is watching this program very closely to find out whether this is the future of pharma and social media or if you are going to fail.
People have huge expectations and we have huge ambitions, but I think the challenge is that it’s a long process. We are inventing something new here and sometimes you have to catch up with those expectations. None of this stuff happens overnight, and I think that’s the biggest challenge.
What exactly do you offer patients?
We give them a forum where they can share structured information about themselves, so it’s not just them talking and giving anecdotes. It’s sharing their outcomes over time. We have a team of five PhDs and clinical nurses—a real science team building out the medical architecture. We get lumped into the social media movement all the time, but we like to talk about it as an open medical platform or framework for patients.
PatientsLikeMe helps the industry engage with patients. We think what we do as a company is bring patients as partners into their organization, almost like a patient core, like they would have a genetics core or a clinical trial core—a whole new element into their business processes.
What’s different is that we are a clinical and market research platform. We are not a marketing vehicle in the traditional sense. Oftentimes, companies start with social media as a mechanism to market with, and we certainly aren’t that.
Are there any restrictions that patients should be aware of?
They can’t solicit and they can’t denigrate other people. We have a code of conduct where we express the ideal PatientLikeMe user being someone who shares his or her experience, but doesn’t proselytize it.
What part will UCB play in the site?
We have a spot on our partners’ page that talks about what we are doing, but there won’t be any pharma people in the community. This is an opportunity to learn, and because this is an open platform we don’t even know what we will learn yet.
What are you doing to make sure you don’t break any regulatory rules?
First of all, this is an extension of our platform. While we are working with UCB on a really interesting clinical research project, this is a platform that we built and control and moderate. This isn’t about working with specific brand or pushing a specific drug, this is an open platform where patients can do anything. Our core value of the business is putting patients first, and they can talk about anything they want. The treatment portion of our Web site isn’t just about drugs, it’s about medical devices, neutraceuticals, lifestyle changes—it’s a broad range.
This is not risk free. UCB definitely took a leadership role in terms of innovation, and any time you try to innovate there is a lot of reasons why not to do it. That is a tribute to UCB and their commitment to epilepsy.