Patients’ Week 2011: Social media and the empowered patient

Andrew Tolve reports on how pharma can stop fearing social media and start using it to help patients—and themselves

When Matthew Browning learned that his wife’s grandmother had a ruptured aorta and needed the immediate attention of a cardiovascular surgeon, attention she couldn’t receive at the small, community hospital in southern Georgia where she was receiving treatment, he sent a tweet to Emory Hospital in Atlanta.

“@emoryhealthcare NEED HELP NOW!! Grandma w/ RUPTURED AORTA needs Card Surgeon/OR ASAP, STAT! can you accept LifeFlight NOW!!?”

Emory Hospital received the tweet, arranged for the LifeFlight helicopter, and Browning’s wife’s grandmother survived.

When Deborah Kogan discovered her son had a rash on Mother’s Day, she snapped a picture of it and placed it on Facebook.

“Nothing says Happy Mother’s Day quite like a Sunday morning at the pediatrician’s,” she quipped.

When the rash got worse and turned up negative for Strep throat, she posted another photo.

“Baby getting sicker. Eyes swollen shut. Fever rising. Penicillin not working. Might be scarlet fever. Or roseola. Or...???? Sigh.”

A friend reached out, suggesting that her own son had experienced similar symptoms that were eventually diagnosed as Kawasaki disease, a rare auto-immune disorder that becomes more debilitating and potentially fatal the later it’s diagnosed.

Turned out the friend was right; Kogan’s son was successfully treated for Kawasaki disease and released.

As use of social media rapidly expands around the globe, stories like these are emerging with increasing frequency.

People are utilizing social media to discuss health, learn about diseases, and offer one another comfort throughout the treatment process.

They’re also using it to harness the power of crowdsourcing in moments of crisis.

Welcome to the new era of empowered patients.

“Patients all over the world, in cities large and small, have these opportunities to get help and support in ways they never have been able to in the past,” says Wendy Blackburn, executive vice president of InTouch Solutions.

“That’s the power of social media.”


The self-propelled patient


The migration of patients to social media is due in part to institutions, companies, and healthcare providers.

Hospitals and treatment centers have set up Facebook and Twitter feeds to manage relationships with patients. Emory Healthcare, the Mayo Clinic, and MacArthur OB/GYN are prominent examples.

Despite potential liability issues, doctors and nurses have started fielding patient questions and providing emotional support outside the office through social media sites.

Even pharma companies have tried to foster online communities and forums, through the likes of Sanofi’s Facebook page VOICES.

The vast majority of patient activity online, however, is self-propelled.

Patients are connecting, studying, and acting for their own needs.

They’re forming chat groups and communities organized around diseases, and they’re using these groups for mutual support, to generate questions for physicians, and to gather collective feedback.

“People often assume the Internet is usurping the doctor-patient relationship,” says Kim Bercovitz, president and founder of The Research Doctor, which specializes in patient-centered market research and social media.

“It’s not at all. It’s empowering patients to do their research, compile lists of questions, and bring them to the doctor’s office to ensure more personalized care.”

Patients of rare diseases have proved a particularly active segment online. Cushing’s Help, a group of more than 8,000 members for Cushing’s Syndrome/Disease, is one of myriad examples.

Many of these groups use their collective manpower in social mediato fuel research and clinical trials that could lead to breakthrough treatments for their diseases.

To facilitate this effort, PatientsLikeMe recently launched a new feature that helps patients find clinical trials that are right for them and helps companies find patients who are right for their trials. 

“It’s difficult for patients to find trials and for investigators to find patients,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe.

“We can help solve both of those problems by telling each of our 100,000-plus patients what trials they’re eligible for and by showing each trial sponsor how many patients they can reach.” (For more on clinical trials, see LINKS TK.)


The value of listening


As more patients join the online conversation and use it to optimize their treatments, pharma remains uncertain about how to respond.

“Pharmaceutical companies are very conservative” when it comes to social media and often lack internal strategies, says Bercovitz.

“Companies really don’t want to open Pandora’s box to see what patients are saying about their brands.”

One option, of course, is to leave Pandora’s box closed and simply observe.

Through social media monitoring, companies can look at what questions patients are asking and what needs they have.

Companies can then build solutions to those needs into products without ever actively inserting themselves into the conversation.

The results can be significant.

If you have two drugs with similar modes of action and similar side effects, and if one of those drugs offers tools and support to help patients live with the disease—support that directly responds to needs or problems that patients have expressed online—that brand may claim competitive advantage.

“This can absolutely be a differentiator,” says Blackburn.

Bercovitz adds that social media monitoring is an excellent way to learn about competitive brands, brand discussion, new and influential topics, and competitive intelligence.

“This is like the world’s largest focus group at your fingertips,” she says.

Social media monitoring rarely paints the full picture, though.

Instead, Bercovitz calls it “the precursor” to primary forms of research.

Companies can gather secondary research from patient social media and use that to craft questions and areas to delve into with first-hand focus groups, telephone interviews, and observational research.

“Social media monitoring should be considered in the broader context of patient-centered market research,” Bercovitz says. “It provides terrific insights.” (For more on pharma’s use of social media, see LINKS TK.)


Foster the people


The point of social media, of course, is to not simply listen but to engage.

Anyone with a computer and a modem can set up a Facebook page or a Twitter feed and insert their views into a broader conversation—companies included.

Pharma organizations have been reluctant to take this step, in part due to bad experiences reported by companies that have already waded into the social media scene.

One of the most cited examples relates to Sanofi-aventis’s VOICES Facebook page.

In 2010, a woman named Shirley Ledlie, who took Taxotere and operated under the alias “Ann Adams,” posted a picture of her bald head along with a message alleging that the firm did not fully disclose the drug’s risks.

Sanofi responded by removing her various posts and blocking her, her aliases, and her daughter, which set off a buzz in other social media realms, arguably bringing more attention to the post, not less.

Bercovitz says that a cautionary tale like Sanofi’s should not deter pharma from entering social media. Instead, it should inform them.

Companies need to create a priori terms of use that govern what sorts of posts are allowed.

This policy should identify acceptable user-generated content, be it pictures or messages, and which types of topics and language are permissible.

“Companies need to be very clear about establishing these terms of use,” she says.

If a patient does post something negative within the bounds of these guidelines, companies must then acknowledge the post and address it, likely by saying something along the lines of ‘I’m sorry you feel this way’ and then directing that patient to customer service.

“In this case, her voice was not heard and, in fact, was dismissed,” says Bercovitz.

“This is clearly a missed opportunity for Sanofi to position itself as caring and compassionate. You have to acknowledge her pain.”


The security of gates


A second, arguably safer and more valuable way to engage in social media is to create online bulletin board focus groups.

These forums encourage open conversation but within what amounts to a gated community.

Companies must recruit patients into their communities and then provide them with log-ins on a server.

Once patients have accepted invitations, they are welcome to discuss topics openly within the group.

This structure has two benefits, says Bercovitz.

The first is that patients typically think of social media as the ultimate public form of communication.

Participating requires you “to open yourself up to the public and doesn’t provide for privacy and anonymity,” says Bercovitz.

Some patients prefer that, while others will be far more candid and revealing in the comfort of privacy.

The second benefit is that other companies cannot perform competitive research and draw their own insights from the forum’s conversation.

Bercovitz cautions that such bulletin boards are laborious endeavors that require constant moderating and recruitment.

“Rome wasn’t built in a day, and a community won’t happen overnight either,” she says.

As is the case with all social media initiatives, if companies want to foster an active conversation, they need to provide the proper investment and manpower behind it.

“What does it mean to be patient-centered?” Bercovitz concludes.

“Every company claims that they are, but I would claim they are not. They don’t even have a budget set aside for patient-centered research.”

Adds Blackburn: “Every industry has the opportunity to provide value to customers and provide information and support and services that no one else can provide. In the case of pharma, we need to really look at the population, see what they’re saying, see what they need, and then make the proper investments to help fill the gap.”

For everything patient-related, join the sector’s other key players at Patient Adherence, Communication and Engagement (PACE) USAon October 24-25 in Philadelphia. Download the full PACE agenda and speaker line-up here.  Want to know more? Contact

To read our Patients’ Week stories from 2010, see Patients’ Week 2010.

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