How Facebook Saved a Life

Previous research by the Pew Internet Project identified something we call “The Mobile Difference.” When you hand someone a smartphone they are more likely to share, to create, to forward, to record and upload a video, to update their status – to participate, not just consume.

And when we talk about sharing, we have to talk about social networking sites like Facebook. Half of American adults use a social networking site – and the vast majority have a profile on Facebook.

The Pew Internet Project’s recent report on social networking sites found that, contrary to fears that technology isolates people and has a detrimental impact on society, Facebook users are more trusting than other people. Facebook users have more close relationships and get more social support than other people. We uncovered evidence that social life online does indeed have a positive association with a healthy social life offline. We are building networks online that we tap into when we need help or advice.

Slate published a story two weeks ago which brought this observation to life. Deborah Copaken Kogan’s 4-year-old son, Leo, woke up on a Sunday with a rash and a fever. She took him to a clinic and, while waiting for his test results, snapped a photo of him with her phone. She posted it to Facebook with the caption: “Nothing says Happy Mother’s Day quite like a Sunday morning at the pediatrician’s.” Friends began commiserating and asking questions in the comments, which as she writes, would have been “inconceivable” before she joined Facebook. In the article she writes that she couldn’t believe “complete strangers would ever fret over my child’s welfare, never mind that the act of posting itself has become as integral to my daily existence as talking, writing, thinking, dreaming.” Back at the clinic, the doctor gave her a prescription for penicillin, pending the final test results.

But her son got worse overnight. She posted to Facebook a second picture of an even puffier Leo, with the caption: “Baby getting sicker. Eyes swollen shut. Fever rising. Penicillin not working. Might be scarlet fever. Or roseola. Or…???? Sigh.”

After she posted a third, even more alarming photo, to her profile, her social convoy shifted into high gear. A friend called her cell phone, saying, “I hope you’ll excuse me for butting in,” she said, “But you have to get to the hospital. Now.” Her son Max had had the exact same symptoms, and was hospitalized for Kawasaki disease, a rare and sometimes fatal auto-immune disorder that attacks the coronary arteries surrounding the heart. “The longer you wait,” she said, “the worse the damage.”

To cut to the chase, the friend was right. Leo was admitted and treated for Kawasaki disease. Months later, he is still recovering from Kawasaki-triggered liver disease. And when their family doctor heard that the diagnosis came from a Facebook friend, he replied, “Bravo, Facebook.”

This story is unusual. Looking online for health information is common. Using Facebook to crowdsource a diagnosis is uncommon. But I bring it up as an illustration of this new development, peer to peer healthcare. Social network sites are an opportunity, an enabling factor in the movement toward peer-to-peer healthcare.

The Walking Gallery

Regina Holliday was the first person I ever heard describe Facebook as a “personal health record with privacy issues.”

Her husband Fred used Facebook to keep his friends and family members up to date on his health, which took a turn for the worse a couple of years ago. He was finally diagnosed with kidney cancer and, looking back at his Facebook status updates, Regina saw all the warning signs in retrospect, which were missed by the doctors who only saw him every once in a while or in the ER. After Fred’s death, Regina became an advocate for patients’ rights, especially health data rights. She is a painter here in Washington, DC, and has used her art to draw attention to her cause.

This is the painting that Regina did for me. It’s on the back of one of my suit jackets. On the left you see me, giving a speech, but I’m behind a screen – the screen of impartiality and objectivity. You don’t see me or my personal opinions. Instead I feature data. That’s data on the right. Faceless, nameless, anonymized data, scrubbed clean for analysis. Light is shining in since data sheds light, but the patient is a little sad to be anonymous, to not have their story told in detail. I think about that as I’m analyzing my columns of numbers, writing reports based on data. Regina captured the tension between data and storytelling, between understanding the aggregate and understanding the individual. You can see she even signed the painting “Adult between ages of 18-49.”

Regina has painted over 50 other jackets like mine for a project she calls The Walking Gallery. People send her a business jacket – or a lab coat – and she paints a story on the back so that every time you wear it to a meeting or a conference, people are reminded to think of patients and caregivers. Because that’s the point of all this, right? That’s why we are here, adding value as we innovate, going into that uncharted territory that Mark Zuckerberg described.

Here are two more examples from The Walking Gallery, stories of families who feel lost in the wilderness.

On the left is an image showing a husband and wife who are doctors, but now facing the wilderness of cancer treatments.

On the right is an image of a mother whose child is severely disabled and their journey up and down the path of Hospital Land, where she’s always a “Guest” and never a full partner on the care team.

I’ll leave those images up on the screen as I talk more about how people are using every tool at their disposal to pursue health in the kingdom of the well and to navigate the kingdom of the sick.

Health Information and Communications Online

Six in ten U.S. adults gather health information online. But doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns, especially among people living with chronic conditions.

Digging deeper, 9 out of 10 adults in the U.S. say health professionals are more helpful than fellow patients, friends & family when it comes to getting an accurate medical diagnosis. Only 5% of American adults say that fellow patients, friends, and family are more helpful than a clinician for a diagnosis.

The picture shifts when we ask about emotional support in dealing with a health issue: fellow patients, friends, and family are the much more popular choice. And it is an even split when it comes to practical advice for coping with day-to-day health situations: professional sources like doctors and nurses rank pretty much even with fellow patients, friends, and family.

The bottom line is that the internet does not replace health professionals. Peer-to-peer healthcare is a way for people to do what they have always done – lend a hand, lend an ear, lend advice – but at internet speed and at internet scale. It’s the evolution of internet use that the Pew Internet Project has been tracking in other industries, and it’s just finally having an impact on health care.

For years the default setting for most people with a health question was: “I don’t know, but I can try to find out.”

The new setting for some people now is: “I know, and I want to share my knowledge.”

Peer-to-peer healthcare is part of that trend. Pew Internet research shows:

One in five internet users have gone online to find others who might have health concerns similar to theirs.

Remember the “mobile difference” – hand someone a smartphone and they become more social online, more likely to share, more likely to contribute, not just consume information.

We have also identified the “diagnosis difference” – holding all other demographic characteristics constant we find that having a chronic disease significantly increases an internet user’s likelihood to say they both contribute and consume user-generated content related to health. They are learning from each other, not just from institutions.

These two forces are coming together to drive forward this trend of peer to peer healthcare. On the one hand we have the availability of social tools and on the other hand we have the motivation, especially among people living with chronic conditions, to connect with each other.

One in four internet users living with chronic disease has gone online to look for someone like them, a significantly higher percentage than other internet users. One in four internet users who are caring for a loved one have done so, as have internet users who have experienced a significant change in their physical health, such as weight loss or gain, pregnancy, or quitting smoking.

All of these groups are also more likely to use social networking sites like Facebook to gather health information and to follow their friends’ health updates on the sites.

On a parallel track, people are using online resources to quantify their health. Pew Internet has found:

One in four internet users have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.

Wireless users are significantly more likely than other internet users to track their own health data online.

The tools are in place. The culture is shifting to expect that people have access to information and each other. There is mounting evidence that connecting patients with each other and with their data can have a positive effect on health outcomes.