Note: This is two posts in one — scroll down to read Regina Holliday’s point of view.

From Susannah Fox:

For me, Twitter is a free-wheeling space where people dance with ideas. Anyone is welcome to jump into the spotlight and take a twirl. That’s how I see hashtags – spotlights on circles of people, talking about certain ideas. Create a hashtag and you call the tune. Add a hashtag to your tweet and you join the circle.

Over the last few days #whatifhc (which stands for “What if health care…?”) became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.

It started when I tweeted a quote from Peter Margolis of the C3N Project:

“What if it was as easy to find out how to…find a medicine that’s right for you as it is to order exactly the book you want?” #c3n

His colleague Michael Seid tweeted back:

“new hashtag? #whatifhc what if everyone had the means & motivation to be part of the solution?”

I tweeted a few examples and the dancers began to whirl:

@produceconsume: #Whatifhc was focused on health, not just on care?

@GoalsGamified: What if more Americans accepted that shopping at farmers market costs less than food courts in the long term. #preventionisthrift #whatifhc

@cloudspark: what if we rewarded docs for choosing primary/family/internal medicine instead of specialties? #whatifhc

@klimaz: #whatifhc people actually took the advice of public health: stop smoking, get outside, eat fresh food, reconnect with friends…

@swertheimer: What if hospital bills showed actual costs? #whatifhc

@meganhatch: What if looking at my medical information and records were as easy as checking my email? #whatifhc

But a couple of people looked at #whatifhc and saw #wtfhc (“What the f… health care?”) in the jumble of letters. They heard a darker drumbeat, from a nightmare, not a dream.

@ReginaHolliday: What if your husband was dying and they would not let you see a medical record w/out paying 73 cents per page? #wtfhc

And the dance continued, spinning out in two directions now.

From Regina Holliday:

Looking back on the memory of

The dance we shared beneath the stars above

For a moment all the world was right

How could I have known you’d ever say goodbye

And now I’m glad I didn’t know

The way it all would end the way it all would go

Our lives are better left to chance I could have missed the pain

But I’d of had to miss the dance.

-Garth Brooks, The Dance

Susannah is right. Twitter is a dance. We often stay wallflowers surrounding the space until a new song is played. A hashtag catches our eye allowing us the chance to meet new partners or reunite with old ones. When I saw #Whatifhc, my dyslexic mind and injured soul saw #Wtfhc. I blushed to use this tag, as I am not one to curse. It made me uncomfortable.  What would people think?

I suppose a lot of things in health care are uncomfortable.

It is uncomfortable to lie on bedsores, whist in constant pain.  It is uncomfortable to have a catheter placed.  It is uncomfortable to be woken in the middle of the night because staff members think that is the best time to check your vitals.

It is uncomfortable to gasp for breath while fluid to fills your lungs as you lay dying.

I might have lost a few followers when I tweeted with this tag.  I seemed the angry patient.  I made them uncomfortable.

I paint about this discomfort frequently.  When you look upon The Walking Gallery you will see a great deal of #Whatifhc jackets.  Susannah’s jacket is mostly a #Whatifhc interpretation.  They are beautiful and hopeful, but you will see #Wtfhc jackets too.

Perhaps when I post a jacket, I shall use these tags.  Labeling each jacket with darkness and light.

What if a day came when I only had to use just one tag? #whatifhc

* * *

What’s your health care dream? What’s your nightmare? Please add it in the comments below or join the dance on Twitter.

Another summary of the Project’s health research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

Internet access:

78% of U.S. adults use the internet (May 2011 survey). For more, see: Who’s Online.

83% of U.S. adults own a cell phone (May 2011 survey). For more, see: Gadget Ownership and Pew Internet: Mobile.

Online health information search:

80% of internet users, or 59% of U.S. adults, look online for health information.

• This is based on a September 2010 survey, but it is a remarkably stable trend dating back to 2002. For more, see: Health Topics and Who Doesn’t Gather Health Information Online?

17% of cell phone owners, or 15% of adults, have used their phone to look up health or medical information.

• This finding is of particular interest to those interested in trends related to young people, Latinos, and African Americans, since these groups are significantly more likely than other groups to have mobile internet access. For more, see: Technology Trends Among People of Color and Mobile Health 2010.

The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals. For more, see: summary charts of health topics.

Also, keep in mind that the typical search for health information is on behalf of someone else – information access by proxy.

Peer-to-peer healthcare:

Pew Internet is tracking overall trends in how the internet is changing people’s relationships with health information and with each other.

“I don’t know, but I can try to find out” is the default setting for people with health questions.

• 34% of internet users, or 25% of U.S. adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. See: Peer-to-peer Healthcare.

“I know, and I want to share my knowledge” is the leading edge of health care.

• 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
• 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
• 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

For more, see The Social Life of Health Information, 2011 and Medicine 2.0: Peer-to-peer Healthcare.

As always, I would love to hear from people about what’s missing or what they wish we’d study. I welcome comments (below), tweets (@SusannahFox), and emails (sfox at pewinternet dot org).

My library is rethinking its provision of services to the public.  We’ve got a history of going beyond what the average academic health sciences library provides in this area but in this age of budget cuts (and in consideration of other factors) we’re taking another look to see if there is something we should be doing that would be more meaningful and helpful to the NC citizens.  I’m most interested in the explosion of peer-to-peer health care and mobile information and think we might be able to make an impact in these areas. Do you have any thoughts about possible roles that academic health sciences libraries could play?

My response:

I sure do, but they are only ideas, inspired by what I’m observing, so take them as such.

I’m writing a synthesis of the Pew Internet Project’s first decade of health research, hoping to summarize “how we got here” and look ahead before we dive straight into the next decade.

Here is a sort of ghost story about an academic medical library, excerpted from Tom Ferguson’s “e-Patients White Paper” (PDF – in English or Spanish):

One morning in 1994, the year Netscape released the first commercial Web browser, the Englewood Hospital library in Englewood, New Jersey, received a most unusual call. The caller identified himself as Dr. Harold Blakely, a local family practitioner. He gave the librarian a bibliographic citation for an article in a medical journal and asked her to make him a copy and to leave it on the table outside the library door, where he could pick it up on his evening rounds. This request was not unusual. The hospital librarians frequently left copies of journal articles that local doctors could pick up after the library had closed.

Later that afternoon, the caller phoned again, checking to be sure that his article was ready. But the library’s director, Kathy Lindner, took the call this time. Ms. Lindner knew Dr. Blakely. But she did not recognize the caller’s voice. After a brief discussion with a colleague, she phoned Dr. Blakely’s office. After several minutes a bewildered Dr. Blakely came to the phone. He assured Ms. Lindner that neither he nor anyone in his office had called the hospital library that day.

Half an hour after the library closed that evening, a nervous, well-dressed man with carefully barbered grey hair entered the hospital through a side entrance. Walking with a cane, he passed the elevator, climbed the stairs with some difficulty, and continued down the second floor hallway toward the medical library. As he picked up the envelope with Dr. Blakely’s name on it, a hospital security guard stepped out of the doorway where he had been waiting and asked him to identify himself.

Under the questioning of the hospital’s security service, he admitted that he was Edwin Murphy, a 58-year-old insurance agent with a chronic hip problem. Dr. Blakely, his physician, had been urging him to undergo a promising new surgical procedure. Mr. Murphy was intrigued but not convinced. He wanted to know more about the potential risks and benefits of the proposed procedure and had repeatedly asked Dr. Blakely to help him obtain a copy of the definitive review article, which had recently appeared in a major medical journal. In spite of his repeated requests, Dr. Blakely had not done so. Finally, in desperation, Mr. Murphy had decided that there was only one way to obtain this vital medical information he needed: He would have to impersonate his own physician.

Eccentric behavior, one might say, at least in those days of journals sitting locked up in medical libraries and clinicians who were not ready for a patient’s request for more information. Nowadays, such articles are published online – either in open-access journals or those requiring a fee – and anyone with internet access can conduct their own information search. Clinicians have come to expect that a percentage of their patients will educate themselves about their condition, participating as full partners in a conversation about treatment decisions.

So how did we get here?

In 1995, one year after Mr. Murphy impersonated his doctor, only about 1 in 10 American adults had access to the internet. By the year 2000, about half of American adults had access to the internet. Now, about 75% of adults and 95% teenagers in the U.S. have internet access.

In the year 2000 only 5% of households had broadband access. Now, two-thirds of Americans have broadband at home, which means that many more people have more engaging, “always on” access. One early Pew Internet study looking at how broadband changes us as internet users found that dial-up users took part in an average of 3 online activities per day. Broadband users took part in 7.

Eight in ten American adults have a cell phone. Six in 10 American adults go online wirelessly with a laptop or mobile device.

With each hurdle passed, from basic internet access to broadband to mobile, Pew Internet research shows that each one has a multiplying effect on people’s behavior. Mobile devices like smartphones are changing us, once again, as internet users, making us more likely to share, more likely to access information on the go, and, placing most American adults on the other side of a massive shift in communications.

In the last 15 years we have seen the internet go from a slow, stationary, information vending machine to a fast, mobile, communications appliance that fits in your pocket.

On the health front, eight in ten internet users look online for health information, making it the third most popular online pursuit among all those tracked by the Pew Internet Project, following email and using a search engine. This has been a remarkably stable trend, hovering at about 80% since we began measuring health information seeking in 2002, even as number of adults who go online increased and the internet-user population broadened to include a more diverse cross-section of the U.S. population.

These days, someone like Mr. Murphy can begin to research options before he even leaves his doctor’s waiting room. He might scan abstracts on PubMed and pick out a few to read at his leisure. In some practices, he might be handed a list of fellow patients’ email addresses – people who have faced the same diagnosis or treatment. He might navigate to an online patient network for people with the same condition, where he can ask questions and get support. He might post an update to Facebook or another social network site to let his friends and family know what’s going on.

Or, if he so chooses, he can keep his smartphone in his pocket and wait to talk in person with a loved one, the old-fashioned way. He may rely on a trusted relative or friend to do the research. Indeed, half of health searches are conducted on behalf of someone else – a new level of caregiving.

Then again, if someone like Mr. Murphy doesn’t have internet access of any kind, nor a care network to support him, he may be perpetually stuck in 1994, wishing he could participate fully in a major medical decision but not having the resources to do so. Who doesn’t have information access is as important a question for the future of healthcare as who does.

Now, what you’re asking about is going to be the second part of my project — what’s ahead? One possibility is for clinicians to acknowledge the power of peer-to-peer healthcare and encourage people to find other people like them (online, probably, but offline is possible too). I’ve seen a few examples of this and I wrote about them here:

Mind the Gap: Peer-to-Peer Healthcare: Beacons of Change

But back to Mr. Murphy, who really just wanted that one article. He may have benefited from peer-to-peer healthcare in that his network could have provided a clandestine copy of the article, plus other people’s personal reviews of the procedure, recovery time, etc. But what about just making sure that everyone who wants to read journal articles, can read them? What can you do to open access where it is currently closed?

On a personal note, here’s an article I’d love to read and discuss with my friends, but I’m not an NEJM subscriber, so not only can I not read it, but I can’t share it:

Making Sense of the New Cervical-Cancer Screening Guidelines

What if I, an educated consumer who knows that she should get a Pap smear but isn’t quite sure how often, could read the latest medical journal article available? What if I, an avid user of social network sites and pretty social person in real life, could spread that knowledge to my female friends, relatives, and colleagues?

Yes, I can rely on mainstream news coverage of the NEJM article. But what if I’m on an information diet and I want to go straight to the source, not the filtered version? For me, in this case, it’s still 1994.

I recently read Susan Sontag‘s two essays, “Illness as Metaphor” (about TB & cancer, published in 1977) and “AIDS and Its Metaphors” (published in 1988). Sontag’s opening lines about the “kingdom of the well” and the “kingdom of the sick” helped animate for me the experience of a newly diagnosed patient (who now can go online to talk with other pioneers, form posses, share maps, and better navigate).

She wrote the first essay when she was a cancer patient and discovered the outrageous truth:

In France and Italy it is still the rule for doctors to communicate a cancer diagnosis to the patient’s family but not to the patient…Cancer patients are lied to, not just because the disease is (or is thought to be) a death sentence, but because it is felt to be obscene — in the original meaning of that word: ill-omened, abominable, repugnant to the senses.

In 1988, vicious metaphors were springing up around the new “enemy” of HIV. As she writes: “Now the generic rebuke to life and to hope is AIDS.”

Sontag’s essays include references to the European experience of TB, cancer, and AIDS, but less about the African, South American, or Asian experience. And, of course, Sontag’s essay itself is now an artifact. So I turned to João Biehl and his ethnography of AIDS therapies in Brazil:

Will to Live tells how Brazil, against all odds, became the first developing country to universalize access to life-saving AIDS therapies–a breakthrough made possible by an unexpected alliance of activists, government reformers, development agencies, and the pharmaceutical industry. But anthropologist João Biehl also tells why this policy, hailed as a model worldwide, has been so difficult to implement among poor Brazilians with HIV/AIDS, who are often stigmatized as non­compliant or untreatable, becoming invisible to the public. More broadly, Biehl examines the political economy of pharmaceuticals that lies behind large-scale treatment roll­outs, revealing the possibilities and inequalities that come with a magic bullet approach to health care.

I would love to hear about other sources of critique and history from across the world.

Switching gears, going from history and ethnography to numbers, let’s review the basic math of health services delivery in the U.S., beautifully, devastatingly summarized by Peter Margolis of Cincinnati Children’s and the C3N Project:

.5 x .5 = .25

As he recently explained:

The dominant paradigm of chronic care delivery in the US is characterized by health “services” “delivered” to relatively passive patients or “consumers” in clinician-mediated encounters during using knowledge that is produced by researchers and clinical experts.  In this current system, physicians provide only 50% of indicated care and patients adhere to about 50% of what is recommended.  The result is a system where only about 25% of patients achieve optimal care, despite spending that far exceeds other industrialized countries. What would outcomes be like if doctors and patients got what they needed 90% of the time?

For people living with HIV/AIDS, of course, the implications are more grim:

Only 28% of Americans with HIV are getting optimal care

Read the full Washington Post article if you have time – the new shared history of this illness is being written today.

One survey question I cited dates back to 2002, but I think it is still interesting. Here’s the text of the question:

Earlier, you have said that you have not used the internet to search for health or medical information. Thinking about the reasons you do not go online for such information, is it because…

much of the information on the internet cannot be trusted?

there are not any health or medical issues that concern you right now?

you are satisfied with the health and medical information you get elsewhere?

you would not know where to start looking for such information online?

The results can be found in the 2003 report, Internet Health Resources, under the heading: Why some internet users have not searched for health information.

How would you update that question? Are there other reasons we should list as options if we put it into the field again?

On October 20-21 in Boston, the Connected Health Symposium will present the latest opportunity to attend a fantastic health care innovation conference. If you’re interested, click to view the PDF invitation from Joe Ternullo, the organizing chair of the event. Essentially, patients and caregivers who would like a free pass should send Joe an email: jternullo (at) partners.org.

If you’d like to read my reactions to last year’s symposium before you make your plans, here are a couple posts:

The Future of Health: Robots, Enchanted Objects, and Networks

Connected Health: patient networks panel

If you’d like to learn more about how Medicine 2.0 included e-patients, please see:

An Open Letter to Stanford

Announcing Medicine 2.0 Stanford ePatient Scholarship Program

There are many more conferences and opportunities for learning. Here are some lists I found:

Global Event List for Health Innovation

Alex Albin’s list of upcoming conferences

HealthCamp Calendar

What other events are on the horizon? What are your observations about including patients and caregivers in health innovation events?

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.

One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: “When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.” Reader comments filled in blanks left by the article, which was a lovely introduction about one example of peer-to-peer health care, not a definitive guide. The article — and the comments — are having a significant impact, as this comment from Katherine Leon shows:

It has been a tremendously exciting week. We’ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD — the first case he’d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.

So as you say, the power of patient groups works!

Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. The Wall Street Journal has a big megaphone and, in this article, used it to spread the word about this one patient network. Will it spark more coverage of other patient networks? Will it spark ideas for other clinicians and other patients who want to tap into the same zeitgeist of shared learning? Those are the questions that came to my mind as I read the comments and thought about the roadblocks and opportunities which face participatory medicine.

I was also struck by the following sentence, which began a lengthy comment about the need for universal health care:

I find it a disgrace that in today’s world, these women who are and have been so gravely ill, have had to become their own advocates in order to improve their diagnoses.

A disgrace? That is not a word that I would ever use to describe people with expertise who work together on a shared problem. But let’s hear more from this commenter:

There should be a protocol within the doctor’s practice, to assure these women are given what they need. They should not have to resort to online articles for their information nor should they be in the position of having to “band together to spur medical research.” Their job should be to get well. Their doctors and elected officials should be doing the heavy lifting.

As I stated at the top, I welcome the chance to read people’s unvarnished comments since I always learn something. Here, I’m learning about how people outside the world of patient networks might view this story and how far we need to go to communicate the reality of the situation. I don’t disagree that in a perfect world, there would be a “protocol” to get people the care they need. But sadly that is not always the case. People often do need to study up, talk with fellow patients and caregivers, search online, and otherwise do the “heavy lifting” involved in health care decision-making. In fact, I worry about the people who do not have access to high-quality information they can understand. For starters, please see: Internet access drives information access.

I’d love to hear what other people think about the WSJ article and comments. I’d also love to hear about other examples of pop-up comment threads related to peer-to-peer health care, participatory medicine, etc. What are you seeing? What are you learning?

Please, um, leave a comment!

I need your help once again. Medicine 2.0 is running three concurrent tracks, plus a host of poster presentations, on Sept. 17-18 and I don’t know enough about some of the topics or speakers to make an informed choice. Please check out the program (HTML or PDF only – sorry!) and let me know if something catches your eye.

The newest material is in the section entitled, “Getting Past the Early-Adopter Stage” — roadblocks, opportunities, and beacons for change (patient leaders, clinician leaders, and technology leaders). Not surprisingly, the NIH audience members suggested adding “policy leaders” to that lineup. It was an extraordinarily good discussion — I’ll post a link to the video when it’s live.

———–

I’ll speak tomorrow at the National Institutes of Health as part of their Mind the Gap lecture series which “explores a wide range of issues at the intersection of research, evidence, and clinical practice—especially areas in which conventional wisdom may lead us astray.”

You can watch the webcast starting at 10am Eastern U.S. time. If you miss it, the video will be archived and I plan to post the text of my remarks (my slides are already up on pewinternet.org).

Much of what I’ll say is a synthesis of what I’ve written and read in the comments here on e-patients.net, including the following posts:

What I learned at Health Foo

Examples, please: peer-to-peer healthcare

Peer-to-peer healthcare: Crazy. Crazy. Crazy. Obvious.

And here are the reports from which I’m drawing most of my data and insights:

Smartphone Adoption and Usage

Social Networking Sites and Our Lives

The Social Life of Health Information, 2011

Peer-to-peer Healthcare

I will also retell (in a nutshell) Deborah Copaken Kogan’s amazing story in Slate from July 13, 2011:

How Facebook Saved My Son’s Life

And finally, a special thank you to Regina Holliday, whose paintings are featured in the last two slides of my presentation. Those images from The Walking Gallery are better illustrations of what I’m trying to convey in this talk than any chart or table I could possibly create.

What: Foo Camp is an unconference, constructed on the spot by the people who show up, with just a few guidelines set out from the start.

Background on Foo Camp:

http://www.enotes.com/topic/Foo_Camp

Who: The O’Reilly team and the RWJF team collaborated on the invitation list which included a mix of gamers, clinicians, health entrepreneurs, investors, global health activists, federal and state government health officials, patient advocates, designers and [I'm sure other categories I am missing].

Background on how Health Foo came to be:

http://rwjfblogs.typepad.com/pioneer/2010/12/tim-oreilly-to-host-unconference-for-health-tech-leaders.html

A growing list of people I met who also happen to use Twitter:

http://twitter.com/#!/list/SusannahFox/health-foo

Where: Microsoft’s NERD Center in Cambridge, MA, is superlatively cool. The mix of open and closed spaces of different sizes was conducive to great meetings, chance encounters, and a feeling of possibility (including the possibility of falling down the winding staircase – look sharp!).

When: The sessions didn’t officially start until 10am Saturday, July 16, but we all got together for dinner on Friday and breakfast on Saturday morning, with generous amounts of time for socializing (like 3 hours for cocktails/dinner, 2 hours for breakfast).

My notes (warning: I listened and took a few notes but I’m leaving out huge swaths of the experience, including some people’s names, b/c I was so immersed in the Be Here Now.):

On Friday night after dinner and opening remarks (urging everyone to put away their devices, which I did) we all got a chance to nominate ourselves to lead sessions. A grid was printed on huge boards – times down the side, rooms listed across. Large post-its (about 5×8 inches) and sharpies were available. I described my session as “Peer to peer health: Harnessing the power of people who want to help themselves. How to trigger the avalanche?” Paul Levy’s blog post has some great photos of this process: http://runningahospital.blogspot.com/2011/07/health-foo.html

Two other sessions seemed similar so I teamed up with those leaders: Ron Gutman of Health Tap (a start-up by this serial entrepreneur) and Jon Kuniholm of Open Prosthetics Project (a labor of love by this retired Marine who lost his right hand in Iraq). We were originally scheduled for Saturday afternoon but I convinced them to switch to Sunday morning so I could attend a competing session (and b/c I wanted to get more of the event behind me before I led a session).

It was incredibly difficult to choose which sessions to attend. There were 5 going on at once for each time slot, the descriptions were sometimes cryptic, and I didn’t know most of the session leaders. At 10am on Saturday I ran into Linda Stone who urged me to join her in Stephen Bezruchka’s session.

Bezruchka had fascinating slides comparing countries’ health data along various lines, both inputs and outputs. He showed how personal behavior turns out to have little effect on life expectancy when you look at the aggregate. For example, Japan has the highest rate of smoking among men in the world and the U.S. has among the lowest, but the longevity effect is the opposite of what you’d expect just looking at those data points. His thesis is that the community-oriented culture in Japan has a salutary effect that we should take note of – that “caring and sharing is a social determinant of health.” People living in societies with higher rates of social cohesion – being there for one another – live longer. He sharply critiqued American society and its trend toward atomization, disconnection, and inequality. One ray of hope I tried to bring: Pew Internet’s report on social networking sites and our lives: http://www.pewinternet.org/Reports/2011/Technology-and-social-networks.aspx

(Lesson #1: Follow Linda Stone anywhere she’s going – or latch onto someone else who is saying “trust me, this person is amazing.”)

Background on Bezruchka:

http://depts.washington.edu/deptgh/map/people.php?id=3

http://www.youtube.com/watch?v=Q0X2exKyC7k (TEDx talk which closely approximates the session)

For the second session, I followed my instincts up a winding staircase to the Treehouse, a cozy, circular space meant to hold 8 people. A dozen were already inside but I squeezed in and sat on the floor, just in time to hear Eduardo Jezeirski say “nothing I build is half as good or useful as what people in the community could design.” The session was about sparking local innovation in developing countries.

A seminal example was passed around: the Jaipur foot, a vulcanized rubber foot with a stiff heel for amputees in rural India. The developers had noticed that U.S.-made prosthetic feet would break after a few months in rural India, where people walk long distances, with no shoes and through wet conditions – a completely different use case from the typical American amputee. The engineers also noticed that local people had no way to fix the U.S.-made apparatus, which requires tools and some special mechanical knowledge, so the locally-generated design was simpler and could be repaired by the user.

I was so out of my depth in this session that I can’t do justice to most of the rest of the conversation among people like Aman Bhandari of HHS and Meg Wirth of Maternova.net. However, I did take notes on an inexpensive prosthetic knee which includes a pedometer and the guts of a cellphone. It sends an SMS back to a central office with the number of steps taken that week – if none were taken, the local NGO can get in touch with the person to be sure the knee is still working and they’re OK. It’s Quantified Self for appliance maintenance, not personal fitness. And it removes the record-keeping burden from the shoulders of the clinic workers, who couldn’t possibly keep track of each prosthetic’s status.

It was an amazing session in which I stretched my mind, yet felt physically cozy, listening to quiet voices – not presentation-volume.

(Lesson #2: Pick some sessions about which you know nothing. Lesson #3: Architecture can have a significant effect on the experience of a meeting.)

Background on Jezeirski:

http://trackerblog.trackernews.net/2011/06/14/ilabs/

Background and a photo of the Jaipur foot:

http://www.goodnewsindia.com/index.php/Magazine/story/jaipur-foot/

http://instagr.am/p/Hyn0Q/

For the third session I was intrigued by the simplest post-it – something about building a human phenotype, plus a sketch of cut-out paper dolls. Spoiler alert: it was AWESOME.

I walked in to a standard-looking meeting room just as Zack Booth Simpson was diving into a demo of Traitwise.com. My choice to stay was helped by the fact that I recognized some people in the room whose opinion I trust.

I believe Traitwise represents a possible future for survey research and it was definitely the most relevant-to-Pew-Internet thing I learned at the whole event, so go now to the site and answer a few questions since it’s the quickest way to understand what it is about:

https://traitwise.com/

I can’t do justice to the discussion except to say that it sparked a lot of ideas in a lot of different sectors. For example, one person in the room is involved in epidemiology and wants to use it for the sorts of questionnaires used to track outbreaks, such as on cruise ships or among people who frequented a certain restaurant chain. These questionnaires are often long and boring: Did you eat salad? Did you eat fish? Did you eat fruit? Etc. for 120 questions. Traitwise would be able to detect patterns and correlations, sifting the common from the uncommon, and quickly serve up only the most useful questions.

I was intrigued by the way they keep it fresh and amusing, serving up random questions so people stay engaged. Traitwise notices which questions get skipped and which are popular – and then serves up that one popular question more often. Any registered user can suggest a question. People can vote questions up or down. People can rate the correlations (and to quote Zack: “causation is overrated.”)

An example of a custom health inquiry is the yes/no question introduced with the following text: “Scleroderma is a chronic systemic autoimmune disease (primarily of the skin) characterized by fibrosis (or hardening), vascular alterations, and autoantibodies. I have scleroderma: yes/no.” You can imagine how intriguing it would be for a whole scleroderma community to answer 200+ questions, including that one, and then look for correlations. Indeed, they have done so – and so has a Marfans community.

I could spend hours on the site answering questions and thinking of questions I’d like to ask. As I told Zack, I haven’t been this scared and inspired since a Procter & Gamble executive said they no longer spend money on surveys or focus groups. Instead, they “listen more than ask” and monitor the social stream. Survey researchers, get ready to re-tool.

(Lesson #4: Go into any room where Tim O’Reilly, Steve Downs, Gilles Frydman, and Farzad Mostashari are leaning forward in their chairs.)

Update: Since the above lesson is not, um, widely applicable, here’s an alternative: Design research that invites participation from your target group.

Background on Zack Booth Simpson and Traitwise:

https://www.traitwise.com/home/about_us

At lunchtime I grabbed a sandwich and sought out a group of people I didn’t know. My friend David Hale joined us and asked that we go around the circle introducing ourselves by our interests, not our jobs. It turns out we had 3 musicians, 3 dancers, and a snowmobiler!

(Lesson #5: Honor what Sara Winge said at the start of Health Foo: “You are here, not because of your job, but because of who you are” – and talk to strangers.)

As I wrote earlier, I convinced Ron and Jon to switch our session to Sunday morning so I could participate in Abbe Don’s 2-hour IDEO process demo – and boy, am I glad I did. It was exactly the kind of hands-on, brainstorm-y session I needed after a mind-bending morning.

Abbe did a quick presentation about how IDEO approaches their projects, then gave us two case studies to ponder. She split us into two teams and gave us specific tasks – write down one personal health goal on post-its and group them on a board, for example. It was so participatory that I only took one note – that IDEO asks “HMW” questions to help prompt new thinking: “How Might We…” The final project for my team was to create a visualization of health that would motivate someone to change their behavior. We had a wonderful time brainstorming and then cutting, pasting, taping, and drawing our way to complete “The Goalposts of Life” – a representation of 3 lives, the grandfather’s cut short by a heart attack (with pictures of what he left unfinished), the father’s (with pictures of his new healthy lifestyle and longer life goals), and the son’s (all the dreams he has for the future).

(Lesson #6: Go into any room where arts & crafts materials are laid out.)

Saturday evening featured Ignite speeches – I think there were at least 10 (probably too many, to be honest, but I enjoyed them all). It was a great way to get a taste of the range of expertise and experiences at the event.

On Sunday morning, I hosted a session along with Ron Gutman and Jon Kuniholm about peer-to-peer health and how to spark widespread use of consumer health tools. A great group showed up – probably about 20 people in a small meeting room so it had an intimate atmosphere. Since I helped lead the discussion I didn’t take any notes, but I appreciated how open people were to thinking about consumer engagement in new ways. We talked about challenges to adoption: people who are truly offline, people who see no reason to engage in their health, technology that is simply a pain to use. We also talked about enabling factors: a life-changing diagnosis that prompts engagement, mobile adoption, technology that is easy to use, communities led by people who model good behavior (such as responsiveness), wider awareness that these tools exist (either in mainstream press or word of mouth).

Here’s the gist of what I said:

A majority of U.S. adults are online, have a cell phone, are using social network sites, are gathering health information online. A significant chunk have smart phones, track their own health data, post health related material online, and look for other people who share similar health concerns.

The tools are in place. The culture is shifting to expect that people have access to information and each other. But we are still at the early adopter stage in participatory medicine. What are the elements that must be in place for this thing to break wide open?

My take-away was that I am on the right track, focusing on this phenomenon of peer-to-peer health.

(Lesson #7: Be brave. Everyone is there to contribute and even nurture, so put your ideas on the table.)

Quick sidebar on the nurturing environment: Jamie Heywood brought his adorable 8-month-old son, Miles, on Sunday and everyone took turns holding him. It was that kind of meeting.

It also struck me that the DIY aspect of an unconference creates a start-up feel – leave your job title at home, your ideas give you legitimacy. The one exception was a recurring question I heard: “Are there any doctors in the room?” I didn’t mind at first, but the question grated after the third instance. Nobody ever asked if there were any nurses in the room, or any caregivers, or anyone currently going through a significant medical treatment. Nobody ever asked if there were any designers in the room, or any investors, or anyone who had an advanced degree of some other kind. We all play a role. Why the need to call out MDs?

The pursuit of health, including the improvement of health care, is a mountain we are all climbing together. As my dad, a pretty serious hiker, always says, “The mountain doesn’t care who you are.” I felt like Health Foo was a 2-day climb of a pretty daunting mountain. Some keys to having a good time were: wear comfortable clothes, pace yourself, stop to enjoy the view every once in a while, and bring a buddy. My buddy was E-patient Dave, who stayed with me at my in-laws’ house in Cambridge – our breakfasts on Saturday and Sunday at Simon’s were among the best “sessions” of the weekend. Side note: if you are ever near Harvard or Porter Sq, treat yourself: http://www.yelp.com/biz/simons-coffee-shop-cambridge

(Lesson #8: Approach Health Foo – and maybe any conference – with humility, curiosity, and a sense of possibility. And wear good shoes.)

The next great session I attended was titled Google Health #Fail, led by Greg Biggers and Farzad Mostashari. It was a big, passionate group with lots of opinions on what went wrong, but Greg and Farzad did a masterful job of guiding us toward a discussion of what would make the next entrant get it right (“it” being personal health records or electronic medical records). Again, I listened more than I took notes, but hopefully someone else will write it up since it was a very good discussion. Here’s what I jotted down:

-          Google created a private record, which was off-mission for Google since they do a great job of connecting people and aggregating data.

-          The ecosystem wasn’t ready and Google got “big company disease” so they bailed too early.

-          There are no lightweight solutions for such a broken system.

-          An EMR is the hardest problem to tackle and the least interesting for most consumers.

-          Google failed to make it easy for people to import data and use it.

-          Useful analytics, like Mint.com’s, would have been a saving grace.

-          A counterview: The minimal use case was compelling enough – an easy way to see last year’s test results next to this year’s. Just to see the data is enough for some people.

-          Outside the U.S., EMRs and health data tracking helps trigger vaccination reminders – another simple use case that is compelling to people.

-          Google was late or unable to get the developer community excited.

-          Companies need to come to the game with someone in mind, someone whose problem you want to solve.

-          PatientsLikeMe’s 4 keys: 1) the platform has to be awesome; 2) someone has to care about the individual; 3) understand what is meaningful about the problem being solved; 4) do research, help people take action.

-          This space is not about apps. It’s about a use case, a value proposition like “this will help you save money” or “this will help avert disaster.”

-          A successful future initiative would do well to focus on babies. Pregnancy and parenthood are gateway moments in people’s lives.

-          Let the data flow and the technology will work itself out.

Health Foo ended with a demo of some toys (literally). Jose Gomez-Marquez designs medical devices for the developing world. His lab creates DIY kits for people in the field to come up with their own solutions. http://iih.mit.edu

Here’s me holding a piece of Lego which serves as a platform for modular pieces that lock into place so clinicians in the field can create custom mechanisms in seconds that in the lab would take hours to create): http://instagr.am/p/H5D1F/

Jose hacked a toy helicopter to create a nebulizer. And the list goes on. It was a fun way to end the meeting.

I ended up going for a walk around MIT with David Rosenman, Linda Avey, and Thomas Goetz, ending up at a bar to watch a few minutes of the women’s World Cup match between Japan and the U.S. We ran into Lucky Gunasekara, another Health Foo camper — another happy chance meeting since I hadn’t had the chance to talk with him during the event.

Thomas, Linda & I grabbed a taxi to Logan Airport, newly armed with one chocolate bar each thanks to David.

(Lesson #9: Keep the spirit of the event alive as long as you can.)

Anyone else want to add to this travelogue? Comments and questions welcome.

Here’s a quick, wonky summary: Jain & Rother use Julian Le Grand’s metaphor concerning the motivations and behavior of post-war public servants and citizens in Britain as a springboard to consider how health policymakers in the U.S. might anticipate a transition to a patient-centered system or its alternatives. If Le Grand’s thesis is new to you, please read “Power to the pawns: For excellence in public services, should societies rely on altruism or self-interest?” (The Economist, October 30, 2003).

This is a debate that needs wide exposure. So, since the full text of the article is behind a paywall, I’m going to excerpt it lavishly. Here goes (with footnotes translated to links):

Patients as Knights

If a society conceives of patients as well-intentioned knights, it assumes that the will and values of patients should drive the structure and organization of health care, called patient centered by the Institute of Medicine and extolled by leaders and consumer advocates. Patients are trusted to wisely use health care services when necessary and to take responsibility for actions they can take and behaviors they can learn to promote their own well-being. Individual patient decision making and autonomy are the center of the system with patients striving for health and following expert medical recommendations. The role of policy and payment is mainly to empower patients and physicians working together toward shared aims; insurance coverage should make these interactions as facile as possible.

Patients as Knaves

If a society conceives of patients as knaves, policy, management, and education efforts are designed to work against patients, not with them. Waste and even fraud are the behaviors that come most naturally to the knave—and it is the role of physicians and health insurance companies to monitor for this behavior and impose stiff financial penalties to deter it. In this scenario, patients engage in risky habits because they are in denial, confident that few personal consequences will follow, and they are passive regarding consequences because others will subsidize the costs of the medical consequences. They use health care—office visits, hospitalizations, procedures, and diagnostic studies—because they do not want to take responsibility for themselves. Policies and regulation must guard against malfeasance, including high co-payments and high-deductible insurance policies as mechanisms to ensure against knavish patient behavior.

Patients as Pawns

If societies conceive of patients as pawns, efforts are applied to building systems that ensure patients do what is right for themselves and for the health care system, because patients cannot be trusted to do so on their own accord. In this scenario, patients are considered uninformed or generally misguided, with unpredictable and unscientific behaviors. The pawn patient is merely a function of the environment and incentives he or she is given; accordingly, physicians and health insurance companies must be benevolently paternalistic and prescriptively decide on clinical priorities. Shared decision making is irrelevant because the physician is responsible for making sure the patient makes the right decision. The role of health policy and regulation for the pawn patient is to guide every behavior because patients lack judgment to do what is right.

In the implications section, the authors write:

As patient behavior is tied to rising costs, and increasing scrutiny is applied to the volume of health care services consumed, policy discourse often reflects the perspective that patients are an obstacle to, not an enabler of, a functioning health care system. Rather than counting on patients to exercise good judgment in managing health care problems, this view holds that patients should be guided with an increasing menu of behavioral or financial devices and strict regulations. Because it is assumed that patients will not undertake healthy behaviors on their own, they are increasingly subject to directive health and wellness programs by their employers, health plans, clinicians, or communities.

As with physicians, the patient in the United States today is seen either as a knave or a pawn and is seldom viewed as the knight. Patient centeredness is lost in a tangle of insurance arrangements. Nonetheless, most patients do not abuse the health care delivery system or actively injure their own personal health. Many are struggling with access to basic services, and others defer needed treatment because of the high deductible amounts health plans put in place.

Since the publication of this commentary, the landmark study “The Oregon Health Insurance Experiment: Evidence from the First Year” was released, showing that if you give people of few means access to health care, “they not only find regular doctors and see doctors more often but they also feel better, are less depressed and are better able to maintain financial stability” (to quote from Gina Kolata’s story in The New York Times). It’s a study that merits a separate post, but let’s forge on.

Next the authors make a point that I’m not sure I agree with:

Many patients seek more information on the internet because they perceive they cannot get needed information from trusted clinicians.

Pew Internet’s research consistently shows that the internet is a supplement to advice from health professionals — that we can agree on. But my observation, based on the literature and my own research, is that patients seek information online for a much wider variety of reasons. Here are three:

• trusted clinicians dispense information, but patients want to do more research on their own to better understand it
• less-trusted clinicians dispense information, but patients want to fact-check it
• a peer patient or caregiver has more or better information than any clinician on some topics

And the grand-daddy of all reasons, probably the most common:

• patients go online to get health information wholly unconnected to a clinical encounter, without reference to whatever information a trusted clinician might offer to them

The authors close out this section with a heck of a good question:

How can society avoid inflicting harm on the patients whose needs remain great and genuine while guarding against abuses by the few whose needs are not?

The recommendations section is very interesting. If I could wave a magic wand, I’d make it a wiki so I could see the changes suggested by authors and reviewers as well as the suggestions from readers, both health professionals and consumers. The ideas laid out are excellent, but I wish for so many more:

The success of innovations in care that seek to improve coordination and reduce unnecessary and harmful overuse will rely on effective connections to the motivations of patients toward better health. For the vast majority of patients, these motives are consistent with their behaviors. Psychological theory suggests that health plans that create a “gaming” mentality by clearly establishing a distrustful relationship with patients and families may backfire. Unless patients trust that clinicians have their best interests first and foremost, any barriers to seeking service will be seen simply as money-saving measures and create the impression that these services are something the patient ought to be able to get and therefore ought to want.

As better outcomes and lower costs are sought by innovative delivery models and new communication technologies, patients must be engaged as trusted partners, not as passive subjects or manipulative knaves. Coordination of care requires communication with patients, their families, and other members of the health care team, often including community resources. Optimal outcomes are not possible without the patient at the center expressing his or her personal values and goals for treatment, trusting that clinicians share that focus.

There are a small number of patients who abuse the system by habit or by pathology (ie, Munchausen syndrome or hypochondriasis). Still, Le Grand offers an important warning that warrants repetition: it is critically important to understand and get true motivations right. Best intentions will fail if persons largely of a knavish quality are treated as knights, but the same may be true for “policies fashioned on a belief that people are knaves if the consequence is to suppress their natural altruistic impulses.”

Now’s your chance: what do you think?

His summary of the Information Age challenge applies widely:

We can either take it upon ourselves to do a systematic analysis of all the available information – which becomes ever less feasible as the world grows more complex – or we can trust experts and the media to be responsible about the information and advice they provide.

As I read Mnookin’s history of vaccines – including opposition to them – I found myself making comparisons to other examples of populist uprisings in health.

Here’s a line that caught my eye:

Then, as now, [anti-vaccination forces] preached the superiority of beliefs over objective proofs, of knowledge acquired by personal experience rather than through scientific rigor.

Replace “anti-vaccination” with “pro-mammogram” and you’ve got the gist of some breast cancer survivors’ reactions to the 2009 U.S. Preventive Services Task Force recommendation that women in their 40s do not need routine mammograms.

Kristin Barker, a sociologist at Oregon State University, co-wrote a study about the public reaction to this recommendation, “Dead by 50: Lay expertise and breast cancer screening” (PDF). As she told HealthDay: “On the one hand, you had the science that was saying mammography for women in their 40s might not be as effective as we thought, and on the other hand, you had the personal experiences of the women who believed they were saved by having a mammogram.”

I highly recommend reading the full study. Barker and her co-author Tasha Galardi beautifully unpack the issues and don’t stint on describing the limitations of their work. For example, they studied only public breast cancer sites, completely open to search engines, with no registration requirements. Did outrage reach the same decibel level on closed breast cancer forums? What was the reaction among women who discussed the recommendations in non-breast cancer online forums?

This relates to other questions which kept coming up as I read The Panic Virus: Where would someone go to find a science-based discussion of vaccines? What’s the online opposite of Mothering magazine and “Dr. Bob” Sears, which Mnookin writes about in damning detail as purveyors of misinformation? If a respected journal like the Lancet couldn’t be trusted to properly vet the evidence, publishing the spurious Wakefield paper, then what source can be trusted? What role do search engines play in guiding people to certain sites? What role do citizens play? What role does the mainstream press play? What role do clinicians play?

Mnookin addresses some of these questions in his book and in even more pointedly in an op-ed published in The Washington Post, “An early cure for parents’ vaccine panic.” He argues that prenatal care should include vaccination education so parents can consider the evidence when they are not sleep-deprived or facing the needle with a newborn in their arms. That’s a strategy that resonates with Pew Internet’s research showing that health professionals continue to hold sway for the vast majority of U.S. adults with health questions.

But what about people who supplement their doctors’ advice by doing their own research? When Pew Internet measured interest in information about immunizations or vaccinations, 16% of internet users said they had looked for this type of information online. Not surprisingly, the group researching vaccination online skews young: 18% of internet users between the ages of 18-49 say yes to this question, compared with 12% of 50-64 year-old internet users and just 7% of internet users ages 65 and older. The group also skews toward being more educated: 19% of internet users with a college degree say they have looked online for information about vaccinations, compared with 13% of internet users with a high school diploma.

What are they finding in those searches? How do they judge the quality of information they find? More broadly, does the benefit of greater access to information outweigh the costs?

One reason I chose to read The Panic Virus was to immerse myself in a topic that is, in fact, wreaking a significant cost in the U.S. and in other countries. Vaccination rates have fallen, nearly-forgotten diseases are on the rise, lots of people are confused and frustrated – and the internet is certainly playing a role, speeding up the spread of information and helping like-minded people to find each other (on all sides).

We can’t go back to pre-internet days, nor would I wish for that outcome, but after reading The Panic Virus I have new respect for the dangers of misinformation, even if the original source was a prestigious, peer-reviewed medical journal.

So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises that are not yet apparent to others.

In the computer industry, these are the folks I affectionately call “the alpha geeks”, the hackers who have such mastery of their tools that they “roll their own” when existing products don’t give them what they need.

Watching the alpha geeks — people whom more traditional marketing analysts might call “lead users” — can give insights into the future directions of technology, gaps in existing products, and new market opportunities.

Who are the alpha geeks in health care?

Off the top of my head, I’d name a lot of the people who founded this site or founded organizations we talk about all the time.

Thinking more deeply, though, I realized that there are multiple categories: patients, caregivers, clinicians, pharma, public health workers, librarians, government (comments please: other categories?)

Re-reading Tim’s description, especially the line about how alpha geeks “live in a world of their own,”  I thought about the people I’ve met who most closely fit that description, who make a way out of no way — people living with rare disease. They are in the crucible. They “roll their own” by creating communities of health information exchange where none had existed.

Who would you call an alpha geek? What can the clinician alpha geeks learn from the patient alpha geeks? Is there a mechanism for that information exchange? What can the pharma alpha geeks learn from the public health alpha geeks? Is there a way to connect the disparate tribes? Or maybe you know about connections that I haven’t seen yet, in which case, do tell!

So when Jen McCabe described Health Month, I was intrigued. It’s a game in which you choose the rules for behavior change — from their list or of your own making. You can choose to be social — or keep quiet. And after a month you’ve formed a new habit — or cut bait.

I jumped in for June, choosing 3 rules that would help me with a few “do more” goals: run, stretch, and eat greens.

The first inkling that I might like this experience was the pledge, which reminded me of the Vow of Heroism that you have to recite when you buy an item at the Brooklyn Superhero Supply Co.

Here’s the Health Month version:

I have chosen these rules in the hopes that I might slowly begin to live a healthier life, and enjoy the process.

If I succeed at following these rules for a full month without running out of life points (I will start with 10 and lose 1 every time I break a rule), I understand that my name will be added to the Wall of Awesomeness. But if I run out of life points, I also accept that my name will be added to the Wall of Almost-But-Not-Quite Awesome.

“Well, I’m TOTALLY going to be on the Wall of Awesomeness,” I said to myself. “Nobody puts baby in a corner.”

I found myself checking in every day, feeling a little rush of satisfaction when I punched in the miles for each run since I was really pushing myself on that rule. My family got used to me talking about my Health Month check-ins, just as they got used to the oven timer being used for my #getupandmove challenges (for months last year my little one thought that every “ding!” meant I was doing push ups).

So how’d I do?

The whimsical prompts and encouragements worked for me, but I was a little shy about joining a team or being active on the Game Wall. I went running, even when I didn’t feel like it, because I wanted to meet my goal. I also made time to stretch, which felt great. And I’ve never eaten so much spinach in my salads as I have this month.

In the end, I met all my goals for two of the weeks and nearly all for the other two. I’m really proud of how I did and that’s driving me forward to take on new goals. I think my name is on the Wall of Awesomeness, but to be honest, I don’t have time to search for it. And as competitive as I am, I was cut to the quick when I missed my running goal by just 2 miles last week. The verdict: “That was an indulgence.” Ouch. And um, no. Eating an entire baguette slathered in Nutella is an indulgence.

For more on health gaming, check out:

Games for Health

Keas: The New Game That Has Officemates Battling Each Other To Get Healthier

imoveyou.com

Health Month (jump in for July! And if you do, let me know — maybe we can form a team)

Any other suggestions? Leave them in the comments, please.



I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.

Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.

Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?

Comments, please!

Now cheer yourself up with the latest article from the Journal of Participatory Medicine: “The Cancer Supportive Care Model: A Patient-Partnered Paradigm Shift in Health Care Delivery,” by Elias Anaissie and Tara Mink.

I have a special fondness for Table 2, which lays out elements of “patient dignity,” “patient empowerment,” and “patient safety.” (You know you’re a health geek when you start to see poetry in black-and-white gridlines.)

The patient stories section is also a gem. For example:

An empowered patient saves the day.
On December 27, 2010, a 25-year old male patient with Castleman’s disease was preparing to leave his hotel to take a flight home to North Carolina when he accessed the UAMS Patient Lab Portal system and identified significant abnormalities in his laboratory results. These results were still pending during his initial consult with the MIRT oncologist, preceding the decision to initiate therapy under the care of his local physician in North Carolina. Concerned, the patient canceled his flight and returned to MIRT for followup. Upon evaluation, it was determined that these abnormal results indicated a need for immediate initiation of a highly complex treatment regimen, and the patient had an excellent outcome.

And to round out This Week in Participatory Medicine, please read my other favorite article, which was highlighted on Twitter by Gilles Frydman:

A combination of giving patients more information about their conditions and better managing their medications can slow the revolving door of Medicare patients in and out of hospitals by about 20%, a study released Monday by Harvard University shows.

- “Better-informed patients can help cut costs, study shows” (USA Today, June 13, 2011). Press release (PDF).

What was the highlight of the week for you? You know, besides all the great stuff that’s been posted here on e-patients.net.

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.

An idea whose time has come? Let’s think that through, beginning with an excerpt of Kevin Kelly’s post, The Natural History of a New Idea:

The notion that ideas have lifecycles has many antecedents. Various people get credit with first articulating it. Here is my version:

The Natural History of a New Idea:

1) Outright wacko.
“This is worthless nonsense.”

2) Odd but unproven.
“This is an interesting, but perverse, point of view.”

3) True but trivial.
“This may be correct, but it is quite unimportant.”

4) Obvious.
“What’s new? This is what we’ve said all along.”

Apply to your favorite example.

I’ve seen this abbreviated to: “Crazy. Crazy. Crazy. Obvious.” But I think it’s more useful to pay attention to the gradations. Where along this scale is your idea?

Pew Internet’s research has documented people’s interest in sharing what they know (the first part of peer-to-peer healthcare). I’d say we hover between “odd but unproven” and “true but trivial,” with the exception of some health digerati who have literally said “duh.”

Other researchers take patients’ and caregivers’ knowledge to the next level to make it useful. Four recent examples:

1) Ian Eslick, a PhD candidate at the MIT Media Lab, posted his plans to harness patient-generated information to improve care. Specifically, he will “enable patient communities to convert anecdotes into structured self-experiments that apply to their daily lives.” Read the PDF: Personalized health experiments to optimize well-being and enable scientific discovery.

2) Kristina Doing-Harris and Qing Zeng-Treitler, researchers at the University of Utah, crawled PatientsLikeMe (with the company’s permission) to identify new health terms used by consumers as they discussed their conditions. Read the article: Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data (JMIR).

3) Elissa R. Weitzman, Ben Adida, Skyler Kelemen, and Ken Mandl of Children’s Hospital in Boston created a privacy-preserving social networking software application for members of the TuDiabetes community to report and chart hemoglobin A1c values. Read the article: Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network (PLoS ONE).

And finally:

4) Paul Wicks, Timothy E. Vaughan, Michael P. Massagli, and Jamie Heywood of PatientsLikeMe blew up the idea that double-blind randomized trials are the only valid path to clinical insights. Their study: Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm (Nature Biotechnology).

I often think in metaphors and similes, so forgive the following summary: Eslick harvests clinical insights from naturally-occurring social networks, whereas Weitzman et al. created a farm and invited an existing community to work on it. Wicks et al. not only created a farm, but a community to work on it (as well as inviting other “farmers” along, like Doing-Harris and Zeng-Treitler).

Then there is the question of scale: micro vs. macro vs. massive. To stretch the metaphor, Eslick is like a mushroom hunter, Weitzman et al. & TuDiabetes operate a co-operative farm, and Wicks et al. & PatientsLikeMe are an agribusiness.

All of this research is moving peer-to-peer healthcare along the new idea scale.

In fact, I’m having fun watching people’s reactions (and mine) when I describe these new studies:  from indifference (bummer, they don’t get it), to puzzlement (OK, we’re at least up to “odd, but unproven”), to excitement (oh good, let’s talk). It speaks volumes to me that the Wall Street Journal covered the PatientsLikeMe study, for example, and other major news outlets did not.

A nice article in SearchHealthIT connected the TuDiabetes and the PatientsLikeMe studies and featured some intriguing quotes:

“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.” – Elissa Weitzman

The word “altruism” jumped out at me, since it resonates with other observations of how people stick around online health communities to help other people who come along after them. It also resonated with what Weitzman and Mandl found in a previous study: 9 in 10 patients using a personally-controlled health record are willing to share medical information for health research (under certain conditions).

The other quote encapsulates the difference between PatientsLikeMe and every other online patient site I have seen:

“It’s easier to add a social network to a clinical research platform than to think about adding a clinical research platform to a social network.” – Jamie Heywood

But is that 100% true? Ian Eslick’s project is a potential proof that you can graft a clinical research platform on to an existing social network.

When I chatted with Jamie about all this, he pointed me to Kevin Kelly’s mind-blowing “Speculations on the Future of Science.” Here’s a quote, but please read the whole thing when you have time:

New tools enable new structures of knowledge and new ways of discovery. The achievement of science is to know new things; the evolution of science is to know them in new ways. What evolves is less the body of what we know and more the nature of our knowing.

My two favorite concepts in the piece are Triple-Blind Experiments (pattern recognition based on streams of data, collected unbeknownst to the population being studied) and Wiki-Science (massive collaborative research will be the first word on a new area).

What if all the storytelling, discussions, and data-sharing among patients and caregivers could be coded, analyzed, and harvested for insights (as Eslick and Doing-Harris/Qing Zeng-Treitler discuss)? What if social networking data could join the “big data” party and allow public health researchers to engage in syndromic surveillance, as Mandl et al. presciently described in 2004? Is that outright wacko? Or are these new scientific methods on the path to Triple-Blind Experiments?

What if, instead of running clinical trials on patients, scientists ran trials with patients (a turn of phrase used by Siddhartha Mukherjee to describe Herceptin trials and as Wicks et al. discuss)? Crazy? Or the beginning of Wiki-Science?

What are your ideas? Where are they along the new idea scale? What are you doing to move them ahead to obvious – and is there a downside to getting there?

That’s how I feel about this latest report from the Pew Internet Project and the California HealthCare Foundation: “The Social Life of Health Information, 2011.”  It contains all the insights we’ve gathered over the last year on mobile health, the health information divide, and peer-to-peer healthcare. It also contains updates on social media use in health and a few new activities. If you’re going to read just one of our reports, this is the one.

Here are some new data points:

-       1 in 4 internet users have watched an online video about health.

-       1 in 4 internet users have tracked their weight, diet, exercise routine or other health indicator online.

-       1 in 4 internet users have consulted online reviews of drugs or medical treatments (but very few post such reviews).

The finding that goes against what I might call conventional rumor is that Facebook is NOT a significant source of health information.

Yes, social network sites like Facebook and MySpace have gained ground in the internet population over the past two years. Sixty-two percent of internet users now say they use such sites, compared with 35% of internet users in 2008. However, the percentage of adults who turn to these sites for health information remains low. Just 15% of social network site users, or 7% of adults, say they use the sites to get health information. This is up only slightly from 2008, when 11% of social network site users reported getting health information on such sites.

For the most part, the trends are stable for all of the questions we asked in the 2008 and 2010 surveys – health topics, hospital review sites, doctor review sites, consumption & creation of user-generated content related to health.

The major difference is how we wrote up the findings. In the 2009 report, we emphasized the “e-patient” or “online health seeker” population – internet users who go online for health information. After talking with policymakers and industry leaders about how internet use fits in to the overall picture of health care in the U.S., we decided to emphasize the “internet user” population and, in some cases, the U.S. adult population. In that way, readers can compare our results to other studies’ results which focus on internet users and/or U.S. adults. The full topline at the back of the current report shows both the “online health seeker” and the “internet user” results so people can easily compare the ’08 and ’10 surveys.

If you have only a few minutes, please read the summary of findings.

If you have a half-hour or so, please read the full report.

Then come back here and let me know what you think! I’m eager to discuss the findings.