Mobile, Social Technology

The Pew Internet Project studies the social impact of the internet.

Right now the most interesting and important impact is that mobile, social technologies are inviting us to participate in the online world.

Instead of sitting back and letting information wash over us, mobile social technologies allow us to jump in ourselves.

This new zeitgeist of participation is transforming political campaigns, the news business, the entertainment world, and yes, health care.

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:

1. our ancient instinct to seek and share advice about our health;
2. 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.

I’ll spend the next few minutes unpacking the data that proves this as a concept. I’ll also point out where I see some roadblocks and some opportunities. Then I’ll ask for your help in thinking through how this is going to develop over the next five years or so.

The Kingdom of the Sick

First, a story from the other side of the country: Silicon Valley.

The Web 2.0 Summit is an annual meeting of high-powered executives and leading thinkers. The stage backdrop last fall was this imaginary map of the online world and the territories that have been claimed by different companies. It’s a whimsical representation of the so-called “points of control in the battle for the network economy.”

Mark Zuckerberg, the founder of Facebook, came on stage and said,

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.

I found that comment so refreshing and idealistic. Leave aside Zuckerberg’s billion dollars and the cut-throat competition of Silicon Valley for a moment and 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 and we are idealistic enough and brave enough to believe we can 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, a new goal to lose weight, quit smoking, or get their numbers under control. They consult experts. They call & search & text. They study up. They band together and form posses.

Pioneers share their maps with newcomers, letting them know which clinical centers are the best for a certain condition. They post warnings – no, that treatment does not work as well as we had hoped. They post new information as they find it – sometimes valid, sometimes not. And the number one thing that people try to do? To get the hell out of the kingdom of the sick.

I bet everyone in this room wants to help them. I bet everyone here is working on something that you hope will change lives, that you hope will build value. And when you are working in health care, your goal is not just building monetary value but hopefully societal value.

We are all on this adventure together, whether you are a researcher, a clinician, a patient, or an entrepreneur. Illness is a daunting mountain to climb and so, by the way, is the reform of our health care system.

My dad was a pretty serious hiker in his day. I remember him coming back from a particularly tough climb, thankful for the people in his group who helped him – and who were helped in return. He repeated the wisdom of climbers everywhere: “the mountain doesn’t care who you are.”

Illness and health care – like a daunting mountain – scares everyone. Your best chance might be to band together with other people, stay humble, ask for – and offer – help.

That’s what I’m here to talk about today: How people are banding together to bushwhack their way out of the kingdom of the sick. Everyone – including the NIH – can learn from their example. We are all on this journey together. And the mountain doesn’t care who you are.

Internet Access by Age, Health Status

Let’s map this mountain, starting with some bedrock data.

This is the known world of internet use in the U.S. which the Pew Research Center has been tracking for over 10 years. Think of us as your GPS for navigating the online world.

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.

In 1995 only about 1 in 10 American adults had access to the internet. In 2000, it was up to nearly half of adults. Now, about 75% of adults and 95% teenagers in the U.S. have internet access.

One thing to keep in mind is the fact that adults living with chronic disease are significantly less likely than healthy adults to have access to the internet.

• 62% 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.

Wireless Access

Six in ten U.S. adults go online wirelessly, with a laptop, mobile device or tablet. A whopping 84% of 18-29 year-olds go online wirelessly.

Three key points about the wireless opportunity:

• Local: Nearly half of all American adults (47%) report that they get at least some local news and information on their cellphone or tablet computer. This is an example of how Pew Internet’s broad portfolio of research can benefit many fields. We are tracking the internet’s impact on politics, news, gaming, education, entertainment. The habits and behaviors that people form in those sectors will likely port over to health when someone gets sick – or is caring for a loved one.
• Health: wireless users are voracious information consumers, including some interesting trends within health – 48% of wireless users look online for information about doctors or other health professionals, compared with 31% of internet users who do not have wireless access, for example. The always-on, always-with-you internet becomes a default information source.
• Devices: 83% of American adults have a cell phone. Small screens outnumber big screens in the U.S. Ask yourself: are you doing everything you can to optimize for these small screens, for text messaging?

Smartphones

We recently came out with our first report focused on smartphones, a segment of that 83%. We find that 35% of American adults have a smartphone.

Our definition of a smartphone owner includes anyone who falls into either of the following two categories:

• cell owners who say that their phone is a smartphone.
• cell owners who say that their phone operates on a smartphone platform (these include iPhones and Blackberry devices, as well as phones running the Android, Windows or Palm operating systems).

One of my favorite survey questions is to ask people to describe something in one word because it’s a quick snapshot of how they feel, in their own words, not ours. When we asked smartphone owners to describe how they feel about their phones in a single word, here is what they said:

The three most common were “good, great, and convenient.” However, if you look closely, you can see “expletive” to the left of “love” on this slide.

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 – otherwise known as Location-disabled – get the information out to everyone, no matter where they are. “I need this obscure information right now, even though I’m in the middle of nowhere” is location-disabled.
• Make place extremely relevant  — otherwise known as Location-enabled – help someone in a certain place connect with local resources. For example, “where is the nearest clinic” is location-enabled.  That’s what we see driving mobile adoption in many ways – hyper-local news and information.

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.

Roadblocks and Opportunities

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
• a life-changing diagnosis or other event that prompts engagement – and triggers the diagnosis difference
• mobile adoption, which seems to have an independent effect on people’s engagement online – 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?

Beacons of Change

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 sweet 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 country, including here at the NIH.

Catherine is also a leader of a social convoy of which she describes as “whipass patient advocates.” She sends so many patients to Billy’s bone doctor and endocrinologist that these doctors refer to the appointments as “consults for Dr. Calhoun.” She’s now working on a bioethics project and recently was 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.”

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 other people, but who are not yet using any of that networking capability for health. A recommendation from a clinician is powerful.

I’ve heard of two projects approaching the nexus of social network and clinical setting.

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. Just to give you a sense of the scale, as of yesterday, 2,114 TuDiabetes users from 61 countries have entered an A1c value on TuAnalyze. 65% of TuAnalyze users say that they receive helpful info on hypoglycemia from their doctor; 72% say they receive helpful info on the topic from TuDiabetes.

I loved this quote from one of the Children’s Hospital researchers, Elissa Weitzman:

“We found this very high level of what we called ‘information altruism.’ People were willing, in a privacy-preserving model, to make individual decisions about how they were going to share their data.”

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?

My second example of clinician leadership is the ImproveCareNow network of pediatric gastroenterologists, which showed how collaboration among clinicians can improve health outcomes among children and adolescents with ulcerative colitis and Crohn’s Disease. By sharing data and ideas, as well as building a system to support translating good ideas into practice, clinicians improved the remission rate from 49% to 67% — with no new drugs. The Collaborative Chronic Care Network (C3N) seeks to build on ImproveCareNow’s success by adding patients, families, and researchers to the clinical learning system. By acknowledging the critical role that families play in keeping children healthy, C3N aims to connect the siloes of knowledge that exist within the patient’s home network and their clinical network.

C3N is supported by an award from the National Institute Of Diabetes And Digestive And Kidney Diseases.

Beacon #3: Technology leaders.

People who make it easy – even fun – to track health data and connect with other people.

PatientsLikeMe is the aptly named service that helps people to connect with others who share their health concerns. PLM collects self-reported patient data and helps people make discoveries about how their experiences fit in to a larger picture of health and disease. If you haven’t been to the site recently, it’s become even more accessible, opening up to all conditions and continuing to harness people’s “information altruism.” This open sharing creates a way for patients to communicate with each other and with their own clinicians – and a way for researchers to observe how conditions and treatments work in the real world.

A simpler, but just as revolutionary, example of technology leadership is the Blue Button initiative created by the Veterans Administration. Veterans can use the VA’s program, My HealtheVet, to track in their blood pressure, weight, heart rate, emergency contact information, and other health history details. The Blue Button project allows the veteran to download a simple text file that can be read, printed, or saved while maintaining control of the personal information. It’s a simple idea that is revolutionary when you think about it. One small step for man, one giant step for data liberation.

Here are my questions for you as we go into the discussion:

What if all the storytelling, discussions, and data-sharing that we know is happening among patients could be coded, analyzed, and harvested for insights?

What if social networking data could allow public health researchers to engage in syndromic surveillance?

What if, instead of running clinical trials on patients, scientists ran trials with patients?

What if patients owned the fact that we have as much to share and contribute to our health as any clinician has to share and contribute?

In conclusion:

The Pew Internet Project has 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 healthcare.