promotion of products on social media but adding value for patients and caregivers as well as learning about what will really differentiate new drugs in the eyes of pharma industry stakeholders, including patients, doctors, regulators, and payers.
While most pharma companies have a social media presence (see table below), they can be difficult to find and often have the feel of one-way communication, typically centered around company news and press releases. I estimate that a minority of company Web pages provided a summary of social media sites.
Despite the constraints in searching for pharma-related patient portals, I was able to find examples of pharma communities built for patients once I looked beyond oncology. Sanofi takes the top spot for The DX: The Diabetes Experience that includes Diabetapedia and a blog with patient stories. You can read an overview of that community here.
Other examples of pharma websites directed towards patient groups include CFvoice (Novartis), MS Active Source (Biogen Idec), and Epilepsy Advocate (UCB). Lilly’s Clinical Open Innovation group appears to be trying to engage patients to help make information about clinical trials more useful. On their social media page, Amgen provides links to partnership called Breakaway from Cancer that the company formed with nonprofit organizations to provide resources to cancer patients. Breakaway has a presence on Facebook, Twitter, and YouTube.
While these sites all provide resources, there is a clear difference in engagement on these sites relative to the online communities cultivated by patients and physicians.
In addition to intellectual property concerns, I hear “challenging regulatory environment” invoked in almost every conversation about lack of pharma/biotech participation with social media. Communication with many of the stakeholders in the pharmaceutical industry is highly regulated, whether it’s FDA rules about interactions with doctors and patients and adverse event (side effect) reporting, or SEC guidelines for financial disclosures. Although the biotech industry is often described as more innovative and nimble, these companies are subject to the same regulations and often have fewer resources in areas that focus on communication (e.g. investor relations, sales, and marketing). Private biotechs that have the same FDA regulations and on the financial side can run into issues when disclosing discussions with or information from public company partners.
For social media, the SEC recently provided guidance on public disclosures, while the FDA has provided guidance for off-label information as well as post-marketing promotion. While additional FDA guidance is anticipated in mid-2014, these documents address promotion, which is not the same as engagement. With the evolving landscape of online communication and community, a regulation that encompasses all of the ways that industry could interact with patients and providers is not realistic. At some point, companies need to accept there will always be risk and move forward.
A social media issue not addressed by the FDA to date is adverse event reporting, which is voluntary for healthcare providers but required for manufacturers. Since there is no clear guidance, questions remain about whether companies are responsible for only information shared on their sites or the Internet as a whole. The Epilepsy Advocate site mentioned above is actually a partnership between UCB and Patients Like Me that includes adverse event monitoring. Patient communities are a clear destination for looking for patient-reported information. With the increasing ease of patients such as Lisa Adams writing about their experiences outside these confines, there will be practical limitations to the number of places companies can keep track of.
At the same time, the famed “big data” would seem to be applicable here, as companies should be able to use computers to sweep lots of anecdotal reports from patients online to gather more insight on the risks and benefits of their products. Beyond regulatory requirements, the collection of adverse event information could provide companies and physicians with important information about dosing and treatment of side effects. While lack of guidance makes monitoring events risky from a compliance standpoint, the greater risk is in missing key data for individual patients and for development programs.
While we are all passionate about the drugs we develop, a patient’s journey with cancer involves so much more. How can pharma/biotech engage in these communities and discussions?
Here are a few thoughts on the next steps:
• Many online oncology communities are run by volunteers and/or built with donations. The industry can help support the efforts of existing and emerging communities with financial backing. Pharma has built a handful of online patient communities in other areas, so structuring these arrangements should be relatively straightforward.
• Returning to the distinction between marketing and communication, companies could support these communities by training and employing subject matter experts whose responsibility is to discuss rather than promote. These individuals could also provide adverse event monitoring for the company on partnered sites.
• John LaMattina, formerly president of Pfizer Global R&D and now a senior partner at PureTech Ventures, suggested pairing scientists who worked on approved drugs with patients that the drugs have helped to give talks. The same approach would be possible and potentially easier with online question and answer sessions about drug classes or specific cancers.
I’ve learned about these communities through my own use of social media. While I don’t treat patients like my oncologist colleagues do, social media tools do allow me to
