Highlights from the 2014 ePatient Connections Summit


Applied Clinical Trials

Two main themes arose from the ePatient Connections Summit: online patient engagement and patient centricity.

eXl Events hosted the ePatient Connections Summit in Philadelphia, and invited biopharmaceutical enterprises, medical device companies, and patient advocates to discuss best practices for engaging patients online and in social media settings. Two main themes arose from this conference: online patient engagement and patient centricity.

ePatient Communities: A Medium for Engagement and Discovery

The topic of ePatient communities resonated throughout many discussions. Most notably, ePatients tended to discover new information about medical products that worked and information about new clinical trials through online discussions and referrals from other ePatients. The information discovery process happens either through social media, or online community discussion forums hosted by online patient advocates, such as Cysticfibrosis.com

One of the biggest challenges that biopharmaceutical companies face is their inability to engage patients in online discussions due to compliance concerns, however, online communities enable biopharmaceutical sponsors to listen to patients’ needs and understand patients’ concerns.  

“People share news (on Twitter), they talk about new studies that came out, and new clinical trials that were announced. In forums, however, they’re talking about treatment, medications, switching dosages, and what’s working; we listen for that, but we don’t actively engage there. Facebook is a great example of folks who shared lifestyle; we thought that was a great place where we could add value to patients, so we decided to launch patient communities within Facebook, EpilepsyAdvocate,” said Trish Nettleship, Director Social Media & Influence at UCB. “We focus more on Facebook and YouTube. Social Media is an opportunity for us to be able to reach patients… YouTube is the most impactful,” said Jamie Mattson, Sr. Marketing Manager, at Medtronic.

Online patient communities also fostered support and information sharing between patients. “I feel like I’m a member of a (online) club… you’re in this world, virtually, you’re around like people… I like the fact that it could be 24 hours a day, and you’re still connecting on very deep and intimate levels (with other patients),” said Jodi Seidler, Joint Pain Health Activist. “I use social media throughout the day... and I get to interact with patients all the time… all across the world, it’s really interesting to hear about the differences they (patients) go through… the differing types of insurances, or how they receive treatment,” said Kelly Conway, Rheumatoid Arthritis Health Activist.

Patient Centricity and Educational Patient Portals Engage Patients

Patient Centricity and online patient engagement were also topics of discussion at ePatient Connections.  Patient advocates exhibited concern that the biopharmaceutical industry does not understand what patients go through in their daily lives, and that biopharmaceutical sponsors need to better comprehend what patients go through every day. “We see a lot of drugs (advertisements) for rheumatoid arthritis, and according to all of those, I should be golfing and throwing a Frisbee every day; unfortunately I can only do those activities maybe once a year. For me it is about where am I going to park and how am I going to walk from the parking lot,” said Kelly Conway Rheumatoid Arthritis Health Activist.

Nevertheless, patient advocates tended to enjoy biopharmaceutical sponsored educational websites. “I love when pharma and device companies create their own patient portal,” said Jodi Seidler. Jamie Mattson featured their patient portal (Mypacemaker.com), which focused on educating patients on commonly asked questions and information about pacemakers. The website features videos on patients and physicians.

Nicole Rojas, Global Digital Communications Director at Shire, showcased ShireTrials.com, a patient portal that offers educational information about clinical research, results from previous clinical trials, information about Shire’s current clinical trials, and easy access to study sites. The website featured easy to understand visualizations, and mapping functionality to simplify information that is normally reported on clinicaltrials.gov. “The language is very patient friendly, understandable, and can be printed out… we use graphics, icons, key facts and figures,”said Rojas.

Although patient advocacy engagement has always been involved with biopharmaceuticals, the topic of patient centricity is not only gaining traction in post marketing settings, but also in clinical research. Moreover, some suspect that patient advocacy groups will play a role in dictating reimbursement requirements to formularies on new drugs.

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