Patient advocate and two-time breast cancer survivor Kathi Apostolidis from Greece spoke at a session on patients’ and physicians’ use of social media. “Social media is not a fad. It has real value,” she said. She uses social media to connect with oncologists and policymakers across the globe, and to stay in tune with the experience of patients with cancer.
“What is new is the rise of individual patient advocates, patients who, due to the nature of their disease, have scouted the internet to find new therapies, to connect with other patients with the same disease, and who want to share what they learned on their journey with others,” she noted. “They are not yet in great numbers in Europe, but the impact of these ‘e-patients’ is growing. They blog, are invited to speak at conferences, and are very active in social media. They are connectors.” Follow her on Twitter: @kgapo and @opnhealth.
Reaching the Advocacy Community
Jan Geissler, cofounder of Leukaemie-online.de, a German online patient advocacy community, as well as CMLadvocates.net, a global social media platform for patient advocates, moderated a session on social media at the meeting.
“I use Twitter to report what’s happening in my session and to follow what’s happening in the other sessions. Lots of people—here at the meeting and outside—thanked me for reporting from the patient advocacy and ethics track of the conference because they could not be there,” he said. He noted that his 350 followers do not constitute a large group, “but I think with key opinion leaders following me, I have a reach in the advocacy community.” Follow him on Twitter: @jangeissler.
Be Part of the Conversation
Ronnie Lassiaille, Head of Web and Data Services for the European Society for Medical Oncology (ESMO), was tweeting membership-related information, scientific information, and press releases. “And we are retweeting journalists’ tweets,” she said. “Of all the congresses I have attended, this is the one where information is really flowing—and we will definitely aim to do even better at next year’s ESMO Congress. There is so much good information out there, and we are trying to be part of the conversation.” Follow her on Twitter: @RonnieLass.
A Digital Story-telling Platform
Denis Costello, Web Communications Manager for EURORDIS and RareConnect.org, a patient advocacy site devoted to rare diseases, sees social media as a “digital story telling platform” that “aggregates the mass of conversation.” From the meeting, he is blogging “how the drug development industry is changing, how it engages patients, how a new model is emerging, moving toward a multi-stakeholder platform,” he said. Follow him and his colleagues on Twitter: @eurordis. ■
Disclosure: Ms. Apostolidis, Ms. Lassiaille, Mr. Geissler, and Mr. Costello reported no potential conflicts of interest.
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