*This post was originally posted at Xconomy.* (Updated to include Lilly COI in table based on comment below.)
Social media hasn’t yet changed the world for biotech and pharma companies, but I believe this year is the year that will change.
For better or worse, these tools change the way people can communicate about specific things in business, politics, entertainment, and more. Online communities of cancer patients, physicians, and advocates are being built with little to no representation from drug developers. With researchers devoted to improving our understanding of cancer biology and improving patient experiences, pharma/biotech should be engaging in these communities as well, despite concerns that federal regulators haven’t established the rules. While no company wants to wade into murky areas, there are risks to being overly cautious.
As Dr. Farris Timimi, director of the Mayo Clinic Center for Social Media (SM), said,
“the biggest risk in health care SM is not participating in the conversation.”
Social Media in Oncology
In oncology, patient-focused groups are leading the way in creating places and situations where patients can share and learn, not only from each other but doctors and researchers. Here are some prominent examples across a few social media platforms. (For a quantitative resource, see The Social Oncology Project 2013, undertaken by a communications firm in May 2013.)
Two cancer survivors, Jody Schoger (@jodyms) and Alicia Staley (@stales), founded the Breast Cancer Social Media (#bcsm) community and were quickly joined by Dr. Deanna Attai (@drattai), a surgeon who treats patients with breast conditions. While #bcsm has a website with resources for patients, the real value is the community they have built around their weekly discussion (Monday evenings at 9 pm ET). When you go, take their advice about lurking seriously because their conversations are fast paced. During a recent chat, there were about 900 tweets in an hour-long conversation. Dr. Matthew Katz (@SubAtomicDoc) recently wrote about the pros and cons of this format. He also provided analytics from Symplur, which has a collection of healthcare Twitter discussions you can explore.
Blogs are a tool patients can use to share whole stories of any and all of the stages of their journey with cancer. These patient stories are personal, but they also provide a window into participation in clinical trials, a critical part of developing new drugs.
Lisa Adams, a mother of three who has Stage IV breast cancer, writes about her life and living with the disease. I found her blog around the time she started participating in a Phase II trial of Genentech’s GDC-0032 at Memorial Sloan-Kettering Cancer Center in New York. Adams shared what it was like to go through the “washout” period leading into the trial, the science behind the compound,how she felt during and after treatment, and what it was like for her physically and emotionally when the drug failed.
There are too many websites that coordinate cancer communities to list, but GRACE shows the potential impact of healthcare professionals who embrace social media. Global Resource for Advancing Cancer Education (GRACE) is a nonprofit that aims to provide reliable and current information to patients. GRACE does regular live webinars for patients and caregivers with a live question and answer session at the end. In addition, the oncologists write about specific cancers and new therapies. Having searched for information for loved ones, the GRACE forums are among the few I’ve found where oncologists provide direct feedback.
Provider and System Rules for Social Media
Healthcare providers and systems also face government regulations, including privacy rules, to contend with in sharing on social media. A group of social media-minded oncologists have written about the concerns specific to providers, including managing patient expectations as well as maintaining licenses. They were also involved in a paper that describes the potential of these tools to treat, to teach, and to learn. While not specific to oncology, the Mayo Clinic is widely recognized as a leader in adoption of social media, with a dedicated Center for Social Media to aid in communicating and community development. The experiences of individual providers and healthcare systems can inform strategies for increased industry engagement.
Where are the Cancer Drug Developers?
With cancer patients and oncologists engaged in online discussions that involve our drugs, where is the pharma/biotech participation? The question isn’t about 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 learn and hopefully occasionally to teach. My online interactions are from the perspective of an individual scientist-turned-entrepreneur running a private cancer drug development company, not as the voice of the company itself. That said, I recognize that management is often assumed to speak for their organization. Perhaps the biggest step industry could make is to empower a small group of people to engage, to learn, and to chart the path forward for others in their organizations.
Failure is inevitable in drug development—only one of thousands of drugs we discover make it to market. However, the culture of the industry seems very risk-averse when it comes to communities and social media. There is no checklist, no standard operating procedure for community participation. The need to invest for the long term and the perceived risks of failure seem to be working against it, but I hope we are on the cusp of new experiments using the tools of social media as part of our efforts to help improve the lives of patients with new therapies.
If we aren’t in the conversation when things are going all right, how will we engage when things may not be going as well?
Corporate Social Media in Pharma:
NF = Not found