September 18, 2011

Medicine 2.0: Peer-to-peer healthcare

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.

I was honored to give the closing keynote at the Medicine 2.0’11 Congress at Stanford. In preparation for it, I gathered all of the Pew Internet Project’s recent research on social networks, smartphones, and health communications. Then I added stories from the front lines, which turned out to be mostly about moms, the power users of both social tools and health care.

Here is what I said (or meant to say – you know how that goes) annotated with links to source material:

We have been on a journey together for the past few days. We will leave knowing that we are part of a community. We have people we can turn to when we have questions.

That spark of recognition that you felt when you met a new colleague this weekend is the same spark that patients and caregivers feel when they meet someone with the same condition or concern.

Listen to this story shared by Julie Keon, the mom of a seven-year-old with cerebral palsy. She was comforting her daughter in the waiting room at her local Children’s Hospital when she sensed someone staring from across the waiting room. She ignored them until she saw it was a mom, holding a baby.

“I knew immediately,” Julie writes, “that you were one of us… I should have recognized that shocked stare because I once had it, too…

As Julie left the waiting room, she passed the mom and they shared a smile, a spark of recognition. She wrote an essay about what she would tell that mom who is just starting on the path of caring for a child with cerebral palsy.

“If I could, I would tell you although you might not believe it right now, you will be okay…

“I would tell you to seek out other mothers like yourself. This is, indeed, the road less traveled and you will feel very alone along the way especially in the company of healthy children and their parents…

“I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information…”

A wealth of information from peers to supplement the wealth of information from specialists. That’s what Julie would tell another mom who is just a few years behind her on the same path.

Just like peer to peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer healthcare has the potential to transform the pursuit of health by allowing people to share what they know.

It is the confluence of two powerful forces:

  • our ancient instinct to seek and share advice about our health
  • our newfound ability to do so at internet speed and at internet scale.

Peer-to-peer healthcare acknowledges that patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.

The Pew Internet Project has collected the data that proves this as a concept. We have also identified roadblocks and opportunities that could change the course of peer-to-peer healthcare’s adoption.

It is fitting that we are here, in Silicon Valley, technology’s Mecca as we consider this moment in Medicine 2.0. But our meeting is a bit different from a lot of other tech events. I’m sure there are people in the room who see opportunities for making money, but I bet there are many more who see opportunities for improving people’s lives. Creating value, not just extracting value.

You might be surprised to learn that Mark Zuckerberg, the founder of Facebook, thinks along similar lines.

The stage backdrop at the 2010 Web 2.0 Summit was an imaginary map of the online world and the territories that have been claimed by different companies. It was a whimsical representation of the so-called “points of control in the battle for the network economy.”

Mark Zuckerberg was one of the last speakers at the Summit. He came on stage and told the organizers:

Your map is wrong. The biggest part of the map has got to be uncharted territory. This map makes it seem like it’s zero-sum, but it’s not. We’re building value, not just taking it away from other companies.”

Think about what his statement means for you, for all of us. Here’s what I think it means:

We know something important is out there, and it is big, it is potentially world-changing – that’s the uncharted territory. The question is: can we prepare for it and even take advantage of it?

The second thing that struck me is that a map of the health world would be similar. For most people, it is unmapped, unfamiliar territory.  As Susan Sontag wrote:

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

It’s not surprising that when someone gets dropped into the kingdom of the sick, they grab their phones, they grab their laptops, they grab their loved ones, and they go. They go into that unfamiliar area of a new diagnosis, a new drug, a new treatment. They consult experts. They call and search and text. They band together and form posses, pioneers sharing maps with newcomers.

But the number one thing that people try to do is to get the hell out of the kingdom of the sick and back to the kingdom of the well.

I bet everyone in this room wants to help them.

We are all on this adventure together, whether you are a researcher, a clinician, a patient, or an entrepreneur. You want to build value and contribute to better health. Your best chance is to band together with other people, stay humble, ask for – and offer – help.

That’s what patients and caregivers are doing. And everyone can learn from their example.

Let’s get into some data.

The Pew Internet Project is a non-profit, non-partisan research organization in Washington, DC. We study the social impact of the internet. We have no advocacy agenda, no ax to grind, no goal in mind besides accuracy and insight.

In order to get an accurate picture of a changing population we use national RDD telephone surveys, conducted in both English & Spanish and with a mixed sample of both landline and cell phones.

About 75% of adults and 95% teenagers in the U.S. have internet access.

However, adults living with chronic disease are significantly less likely than healthy adults to have access to the internet:

  • 64% of adults living with one or more chronic disease go online.
  • 81% of adults reporting no chronic diseases go online.

That’s one of the roadblocks to keep in mind. There are still pockets of people who remain offline, but many of them have what we call second-degree internet access. Their loved ones are online. Caregivers represent an opportunity for the engagement of our elders and other people who remain offline.

Six in ten U.S. adults go online wirelessly, with a laptop, mobile device or tablet.

Eight in ten American adults have a cell phone. Small screens outnumber big screens in the U.S. and probably the world. Ask yourself: are you doing everything you can to optimize for these small screens?

We recently came out with our first report focused on smartphones, a segment of that cell phone group. 35% of American adults have a smartphone.

Several demographic groups have higher than average levels of smartphone adoption, including:

  • The financially well-off and well-educated.
  • Those under the age of 45.
  • African Americans and Latinos.

25% of smartphone owners say their phones are their main source of internet access. Fully 42% of smartphone owners between ages 18-29 say that. Many of these people have other choices, but they choose to access the web on their smartphone.

Here are three opportunities amplified by the rise of smartphones:

  • Reach African Americans, Latinos, and young people.
  • Make place irrelevant – to get the information out to everyone, no matter where they are.
  • Make place extremely relevant  – to help someone in a certain place connect with local resources. That’s what we see driving mobile adoption in many ways – hyper-local news and information. Nearly half of all American adults (47%) report that they get at least some local news and information on their cellphone or tablet computer.

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 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 do.

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 recently published a story 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 and posted it to Facebook. Friends began commiserating and asking questions in the comments. 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 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. 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.

You may have noticed that my two examples so far have been moms of young children. Maybe that’s because I’m a mom myself and those stories resonate with me. But I also have data to back up my focus on moms. Women are the power users of social network sites. And, as I said earlier, Pew Internet’s research has found that Facebook seems to support intimacy and relationships among groups of people, rather than undermining those positive aspects of life. This is no surprise to many people, especially those under the age of 35, but it’s a big surprise to people who have not had the benefit of these kinds of experiences. I think that’s a significant barrier to adoption of social networks in health care, so let’s spend a moment understanding their point of view.

Robert Putnam’s 1995 book, “Bowling Alone,” struck fear into many people’s hearts because of his stark image of one man pursuing what used to be a social hobby – bowling – now pursuing it alone.

Putnam argued that American society was fragmenting – people had become less likely to join community groups and more likely to spend time alone, or with fewer people, and this was chipping away at our collective social capital.

This observation has permeated social theory discussions ever since. But that 1995 image of a solitary bowler needs an update. Now, in 2011, people are reconnecting with community groups, reconnecting with each other — online.

We are all connected. We are all building social capital. You just can’t see it if you’re not looking. And many people in our health care systems are not looking.

Please also notice that my two examples so far show how people connect with each other for information and support, but go to clinicians for treatment.

Six in ten U.S. adults gather health info 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 into the data, 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.

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.

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.

Pew Internet research shows that one in five internet users have gone online to find others who might have health concerns similar to theirs.

That percentage is even higher – 1 in 4 – among those living with chronic disease, those who are caring for a loved one, and those 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.

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.

But we are still at the early adoption stages.

What will it take to bring this to the next level?

Let’s go over the roadblocks:

  • pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability
  • people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment
  • technology that is simply a pain to use
  • communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other
  • a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes

Let’s go over the opportunities:

  • caregivers who can help someone access online resources they may need to get better care – that’s second-degree internet access
  • a life-changing diagnosis or other event can prompt engagement – and trigger the diagnosis difference
  • mobile adoption is on the rise and seems to have an independent effect on people’s engagement online – triggering the mobile difference
  • technology that is easy to use, that makes engagement fun and even irresistible
  • technological means to connect silos and let data flow
  • mainstream press coverage, word of mouth, and clinical programs that help to spread awareness

Now I need your help. Think about your own family and friends: who might benefit from connecting with other people to lose weight or learn about treatments? Think about your work, whether it is in clinical practice, research, or another pursuit: who might benefit from understanding peer-to-peer healthcare?

What are the roadblocks and opportunities you see in the landscape?

I’m going to close with examples of some leading indicators – beacons of change that address some of these roadblocks and opportunities.

Beacon #1: Patient leaders.

Catherine Calhoun, mother of Billy, a 9-year-old boy who happens to have McCune-Albright syndrome, which among other things, causes severe bone pain.

They live in Louisiana but Catherine has researched and networked her way to getting Billy cared for at the best clinical centers in the U.S. She has no formal medical training, but sends so many patients to Billy’s bone doctor and endocrinologist that these doctors refer to the appointments as “consults for Dr. Calhoun.”

Catherine is now working on a bioethics project and was recently in a discussion group with clinicians who talked about how cutting-edge, off-label use of medications are discreetly shared among colleagues at conferences and in social settings. But what about clinicians who aren’t privy to those conversations? Catherine spoke up: “You hope the parents find a big-mouth, trouble-making mama like me who will give them a list of the possible medications and the whys and hows and whos.”

Is that good enough for us? Is that the best we can do? Not to take anything away from Catherine – she’s an incredible force for good in the world. How do we take what she and other experts know – and multiply it?

Beacon #2: Clinician leaders.

I think that clinician involvement may be a significant piece of the puzzle — a way to spark interest among people who have internet access, who are using social tools to connect with their friends, but who are not yet using any of that networking capability for health. A recommendation from a clinician is powerful.

Children’s Hospital in Boston created a social networking software application for members of the existing TuDiabetes community to report and chart hemoglobin A1c values. The resulting tool, TuAnalyze, allows people to contribute their own data and control who has access to it. As for the network, users are as likely to say that they receive helpful information on hypoglycemia from TuDiabetes as from their doctor.

TuAnalyze opens the door between the patient social network and the clinical setting. What if that door was opened by a clinician, who prescribed TuAnalyze to her patients? Would that bring peer-to-peer healthcare to a new level?

Beacon #3: Technology leaders.

People who make it easy – even fun – to track health data and connect with other people. Sites like PatientsLikeMe, Inspire, and Curetogether; tools like FitBit; games like HealthMonth.

Pew Internet research – and these innovators – have found that if you enable an environment in which people can share, they will.

And the benefits of that sharing will entice others to join.

That’s peer-to-peer health care.

Cite this publication: Susannah Fox. “Medicine 2.0: Peer-to-peer healthcare.” Pew Research Center, Washington, D.C. (September 18, 2011) http://www.pewinternet.org/2011/09/18/medicine-2-0-peer-to-peer-healthcare/, accessed on July 23, 2014.