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Moebius Syndrome conference group portrait, 2010A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers.

This was no academic exercise. It was as if I had painted their portrait and shown it with confidence to other audiences, but that day I’d hear from the portrait’s subjects. Would they see the likeness?

I prepare carefully for every speech, but I knew that the Moebius Syndrome conference audience would be different. One quarter of the attendees would have full facial paralysis. They can’t smile, frown, or in some cases, blink. I wondered what it would be like to speak to a potentially stony-faced audience.

I looked online at pictures of people with Moebius. I watched videos, too, getting used to seeing people talk without moving their mouths, like master ventriloquists.

There would also be a lot of parents and grandparents of kids with Moebius in attendance. Pew Internet’s most recent health report focused on caregivers and their voices were fresh in my mind. I haven’t seen a more passionate patient advocate than a mom or dad whose child is facing a serious health issue.

Here’s what I said [with a few side notes about atmospherics]:

I work for the Pew Internet Project in Washington, DC, studying the social impact of the internet. We conduct national phone surveys, which I pair with fieldwork in online patient communities.

I am always looking for what Tim O’Reilly calls “alpha geeks” – people who are forging new paths that others will follow. His alpha geeks are computer hackers, people who create new tools and work-arounds with software and hardware.

I found my alpha geeks among people living with rare disease because you are health care hackers. You have been forced to navigate the maze of health care in new and interesting ways, creating tools, and making connections.

You all know instinctively what most people had to learn: on the internet, the expression of your spirit has nothing to do with the expression on your face.

After spending time looking at patterns in your communities, I looked for similar patterns in the general population. They are there. Other people are behind you on the path, but they’re on the same path. And it’s a path leading to what I call peer-to-peer health care.

Peer-to-peer health care

Peer-to-peer health care 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.

That’s the data I want to share with you today.

But first I want to tell a couple of stories.

How many people know the name Burt Minow? [Two or three people raised their hands.]

This story was shared with me by his niece, Nell Minow.

Her Uncle Burt was born in 1920. He was disabled by facial paralysis and hearing loss and the doctors’ advice at the time was to put him in a state institution. But his mother was a woman of “indomitable spirit.” [I glanced up at that point and saw the bright eyes of an entire room of people of indomitable spirit and my voice caught in my throat.]

Wrigley Field signAs Nell recounts, “She took him home and then she forced the school system to take him, long before the Americans with Disabilities Act.  He graduated from college, worked in the family business, and was dearly loved by all of us for his witty poems and loyalty to underdogs of all kinds, especially the Chicago Cubs.” [This got a gentle laugh.]

He never got an accurate diagnosis until he was much older, but of course you all recognize it. He had Moebius Syndrome.

Nell was an early internet user, all the way back in the 1980s, and she recognized that her Uncle Burt could go online and be represented by his words, not his face. He took to it like a fish to water, joining discussion groups about his favorite soap opera, “Days of Our Lives.”

Nell recounts: “And then, when the web first started, I tried out new search engines with arcane terms like ‘Moebius Syndrome’ and one day, I got a hit. A family with a young daughter who had Moebius had started a web page. I emailed them and told them about Uncle Burt. They wrote back instantly asking me how old he was. The very limited medical literature of the time had no record of anyone with Moebius living past their 30′s. This family had located some 500 people with Moebius around the world and all of them heard for the first time that day that they could live a normal life span. And Uncle Burt heard for the first time that there were other people like him.”

For the last year of his life, he was the chief of a tribe he hadn’t known existed, thanks to the internet.

[Again, can you imagine telling that story to 50-60 people who, if they had been born 100 years ago, would have faced either the loss of their child or life in an institution? I had to look down at my notes to regain my composure.]

My second story was shared by Julie Keon, the mom of a little girl with cerebral palsy.Mother and child

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. 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 travelled 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 you all are doing here, this weekend. And it’s what you do when you connect online.

Everyone feels rare if they feel alone.

Everyone feels rare when they are newly diagnosed, even if it is something common, like diabetes. What you can teach the world is how to thrive in your rareness, how to connect with other people to feel less rare. In short: how to hack health care.

Just like peer-to-peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer health care 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.

Now, the evidence:

About 80% adults and 95% teenagers in the U.S. have internet access. But remember, it was not that long ago that the web was new, as it was for Burt Minow. Remember that things can change quickly; stay alert to new possibilities.

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

–         62% of adults living with one or more chronic disease go online.

–         81% of adults reporting no chronic diseases go online.

That’s one of the roadblocks to keep in mind. There are still pockets of people who remain offline, but many of them have what we call second-degree internet access. Their loved ones are online.

Caregivers represent an opportunity for the engagement of our elders and other people who remain offline. And of course on behalf of children.

We include parents of children living with significant health issues in our definition of a caregiver since they comprise 3% of the U.S. population, which is not the case in every study. One national caregiving expert I spoke with years ago dismissed these caregivers, saying, “That’s just parenting.” [This point registered sharply with the crowd. One mom, visibly perturbed, said something like, “Let her try it.”]

The Broadband, Mobile, and Diagnosis Difference

Broadband access is widespread these days, making the internet a go-to resource for all sorts of information and communications.

How many of you remember when you made the transition from dial-up to broadband? You stopped looking at the phone book or newspaper movie listings, right? The same thing happened in health – the internet became a default resource for answering questions. We call it the “broadband difference.”

Almost nine in ten American adults have a cell phone. Small screens outnumber big screens in the U.S. and probably the world, which is particularly important when you are hoping to reach an international audience with your information, as you all do.

Nearly half of American adults have a smartphone.

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 in, not just consume information. Imagine what that could do for health care.

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.

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 health care. 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 and caregivers.

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 in the general population.

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.

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

[I didn’t even get past the first bullet point on my slide listing the roadblocks when a man raised his hand with an idea. Here are the topics we covered in a wide-ranging conversation, of which I was really just the moderator:

–         How can we make sure that good advice beats out bad advice online? Can we incorporate a system in our community for “up-voting” health advice, like reviews are rated useful or not useful on Amazon? We know who is an expert on something – like techniques for feeding a baby – how can we make that visible online?

–         [I asked how many people in the room had modified a baby bottle or some other object for their child – nearly every hand went up.] One mom told about how to use a needle to slice open a rubber nipple so a baby can get the milk without sucking. Another mom told about how to punch an extra hole in a sippie cup so an older child can drink. A dad cut a bleach bottle, fashioning it into a seat so his baby could sit up in a wagon. The list went on.

–         I told them about Maker Faire and suggested that they consider creating an online gallery of Moebius hacks. Everyone could upload their own photos to Flickr, for example, so nobody has to reinvent the wheel.

–         That inspired one mom to tell a story: When her baby was born, she couldn’t take a bottle so she was fitted with a feeding tube directly into her stomach. Practically, this meant she couldn’t wear a onesie – just shirts that ride up and provide access to the tube. After a few months of frustration, the mom realized that she could just cut a whole in a onesie – voila! A more comfortable shirt for her baby. Why didn’t anyone tell her she could do that? And why didn’t anyone at the hospital tell her there was a feeding pump that could do the night feedings? For the first six months of her baby’s life, this mom got up every four hours to administer the formula when, if she’d had the pump, she could have been sleeping.

–         “We all work collaboratively, but I notice that my doctor doesn’t,” said another mom. “After I’ve talked with my community online, I go back to him and ask, ‘What do your colleagues say about this issue?’ And it’s clear it didn’t occur to him to ask them. How can we encourage doctors to do what we do – work together?”

I’m sure my memory of the discussion is incomplete, so I’m hoping that we can continue it here.

What do you see in your own life or work?

Do you see other roadblocks or opportunities?

Have you hacked an everyday object to create assistive technology?Rolled up wash cloth and tennis ball, each with a pen stuck through them

In another session, I saw some very simple solutions, such as a pen stuck through a tennis ball or rolled-up wash cloth to make it easier for someone to grip. I posted it on Instagram and Twitter and heard from a few people that they might use this hack themselves, because of rheumatoid arthritis.

I also wanted to note some progress on one of the “opportunities” I first identified a year ago: mainstream press coverage. Stories about peer-to-peer health care have appeared in The Chicago Tribune, The New York Times, and The Wall Street Journal. But I think we reached a new level of mainstream when Good Housekeeping magazine published, “Miracle on Facebook.”

I’ll close by saying thank you to the Moebius Syndrome community for their warm welcome. I spend my days analyzing data, hoping that I’m getting it right, wondering if the portrait I’m painting is accurate . This community’s affirmation that yes, I got it right, is incredibly meaningful to me.

I urge other researchers to find a way to present their data directly to the people affected by or part of the work. We all have something to learn. We all have something to teach.


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