Rare is different: patients and caregivers are undisputed “power users” of social media

Eileen O’Brien

Siren Interactive

(Continued from “Rare is different: patients and caregivers are key drivers of diagnosis and treatment in rare diseases”)

When a disease is categorized as being “rare” finding information about diagnosis, treatment and physician specialists is more challenging than it would be for a more common disease. This blog post, part four of our “Rare is different” series, focuses on how social media provides a vital link to information for rare disease patients and caregivers—the undisputed “power users” of social media.

Rare disease patients and caregivers rely on social media to:

• Conduct research

• Connect with others for peer support

• Share relevant content for diagnosis, treatment and quality of life

• Advocate for awareness

• Raise funding for research

Power in numbers

An online search for almost any rare disease will result in identifying someone who is talking about it online and sharing information. For example, there are 1,350 videos on YouTube and more than 50 Facebook pages about hemophilia, a rare disease that affects approximately 17,000 Americans and 6,000 people in the UK.

“An online search for almost any rare disease will result in identifying someone who is talking about it online and sharing information.”

The significance of rare disease social media initiatives is brought to life through the personal stories of rare disease caregivers featured in Uncommon Challenges, Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers published by Siren Interactive.

Before the Internet we were alone,” explained Jordana Holovach, whose son, Jacob, was diagnosed with Canavan disease. “In 1996, when Jacob was born, there was no search engine to offer me any information. Today, because of social media, we are connected with many people who are fighting the same fight as we are. The Internet has made our small disease larger by making us so much more visible to people all over the world. Jacob’s Cure has received random donations through social media. We’re able to educate so many more people. I see social media as an amazing tool. It has given us a fighting chance.

Learn more about Jordana, Jacob, and living with Canavan disease in a New York Times article and audio slide show.

The power of sharing

Social media provides for the distribution of relevant content that’s easily shared by one active contributor to a larger online community. The illustration below suggests how one person can be a “key influencer” who provides new content to a handful of “sharers” who pass the information along to the masses.

Figure 1: Social media use in rare diseases – one person can be a “key influencer”

The Pew Research Center, a nonpartisan “fact tank” that provides information on the issues, attitudes and trends shaping America and the world, recently conducted a study that showed that people affected by rare diseases outpaced all other groups, including those living with more common chronic conditions, in tapping the wisdom of their peer network via social media. A majority say they turned to others who have the same health condition (source: Pew Internet and American Life Project, Pew Internet Peer-to-Peer Healthcare Report, February 2011).

“Adversity, especially in health, seems to flip a switch in some people,” notes Susannah Fox, Pew’s Associate Director of Digital Strategy. “The Pew Internet Project’s research has shown that the Internet is like a secret weapon for these healthcare superheroes, allowing them to reach across time and space to gather, share, and create health information. People living with rare disorders, however, take it to a whole new level. They have honed their tools to a sharp point—and been honed themselves as they find themselves squeezing through the tightest spaces, finding a way forward where there had previously been no path.”

“…people affected by rare diseases outpaced all other groups, including those living with more common chronic conditions, in tapping the wisdom of their peer network via social media.”

Knowledge is power

People living with rare conditions often struggle for many years to arrive at a diagnosis. There is no way physicians can stay up to date on the medical literature and new treatments. Many physicians will never treat a patient with a rare disease.

Patients and caregivers, however, are extremely motivated. They rely heavily on social media to learn everything they can about their rare conditions. Often, the relationship between these empowered patients and their physicians is a true partnership. The Pew Internet Peer-to-Peer Healthcare Report notes that “Health professionals retain their role as experts in a certain field or condition, but in these disease communities, each person is an expert in observing the effects of a disease or a treatment on their own or a loved one’s body or mind.”

Figure 2: Catherine Calhoun with her husband, daughter, and son, Billy, who received a diagnosis of McCune-Albright syndrome in less than three days – due in large part to her urgent and relentless search for information online

Catherine Calhoun: “I live in this little town. But through the Internet, I have the power to reach out to doctors, moms, and researchers all over the world. Sharing our story on my blog helps me to feel like I’m not alone. I also participate in all of the e-mail chats, Yahoo!, Google. I actually have Google Alerts set up on my computer so I can see if there’s any news about McCune-Albright syndrome or fibrous dysplasia, which is part of the syndrome. A while back, an alert came up for a blog post from a woman in Kansas talking about her nephew who had just been diagnosed with McCune-Albright syndrome. She mentioned that he had fibrous dysplasia vein disease in his head, and that doctors were planning to treat it with radiation! I was immediately concerned because I know that fibrous dysplasia should NEVER be treated with radiation—it will turn into cancer. I immediately left a comment on her blog urgently asking her to email me and to call Mike Collins at NIH to verify my advice. Ultimately, she realized that I was giving her good medical advice and her nephew did not receive radiation. I connected with the parents of the boy, which led to his participation in an NIH study. He’s getting awesome care.”

“I actually have Google Alerts set up on my computer so I can see if there’s any news about McCune-Albright syndrome or fibrous dysplasia…”

Worldwide connections

Some patients who are diagnosed with a rare disease may be only one of a few thousand people around the world who share the same diagnosis. Many rare disease patients will never meet another person face-to-face who has also been diagnosed with the same rare disorder. However, they may frequently communicate with one another to share rare disease information and build relationships using social media such as Facebook, Twitter, online communities, and blogs.

Figure 3: Dayna Fladhammer, mother of three children who were all born with a primary immunodeficiency disease (PI)

Dayna Fladhammer: “Today, the world is a much smaller place. I’m not looking for 250,000 people in a sea of six billion, I’m looking for them where I know they are. Some of my children’s best friends are also diagnosed with primary immunodeficiency. My daughter, Kate, has done multiple infusions with friends on Skype. Our son, Charlie, has sent and received encouraging text messages during his infusions. I have close to 100 other families I communicate with on Facebook, and that number triples when you add in Yahoo groups and a social networking site offered by the Immune Deficiency Foundation.”

Social media also allows them to speak a common language.

Figure 4: Terri Granard and her son, Eli, who was diagnosed with the rare chromosomal abnormality Ring14, Terri is able to create worldwide connections with fellow caregivers who speak other languages by using Google Translator.

Terri Granard: “Some of my closest relationships are with people we’ve met online. Eli and I have flown from Los Angeles to Tennessee twice to visit a family that has a child with Ring14. It’s like meeting someone who has not only the same blood type as you, but the same fingerprints. I talk with people from all over the world—and I use Google Translator a lot! It’s about giving people hope, even if it’s a shot in the dark. There are advances in medicine every day. That’s why Eli is alive. You have to look to other parents, and you have to be there for each other.”

Pharma can fuel the power

Pharma marketers can benefit from establishing a strong online presence with rare disease patients and caregivers. To connect with these social media power users, pharma needs to:

• Understand what information rare disease patients and caregivers need

• Conduct online listening to learn how to effectively communicate with these audiences

• Provide relevant content that adds value

• Consider partnering with an appropriate trust agent to reinforce credibility

Part 5 of this series – “Rare is different: patients &amp, caregivers want pharma to participate” – can be viewed here.

About the Author

Eileen O’Brien has 16 years of interactive healthcare marketing experience. As Director of Search &amp, Innovation at Siren Interactive, she oversees search strategy, CRM, analytics, and social media. Previously, she was Director of Search, Media &amp, Insights at Compass Healthcare Communications, where she developed the social media practice. She is an opinion leader on social media and has been a speaker at industry conferences and quoted in industry publications. Eileen moderates the #SocPharm tweetchat as @eileenobrien on Wednesdays at 8 p.m. (U.S.) to discuss pharma marketing and social media. For more information, email Eileen at eobrien@sireninteractive.com, or visit www.sireninteractive.com.

Do you understand what information rare disease patients and caregivers need?