A 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.]
As 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.
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?
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.
Good heavens, a whole “sociology of patienthood” paper in one blog post. What a tour of the landscape. How did you do this so fast after your Moebius post last week?
I blew up that photo, btw, and looked at the characteristic downturned mouth all over the place. Great job of recreating for us what the experience is like.
I’m particularly drawn to “that day I’d hear from the portrait’s subjects. Would they see the likeness?” That’s the core test of any modeling, including the problems we often discuss here with statistics: “Does the population actually match what the statistics predict?” Peter Schmidt, the statistics guru at Parkinsons Foundation, says a rigorous p=.05 is commonly way off simply because the study didn’t measure what it thought it was measuring. (That’s a core point in the recent book by SPM member Marya Zilberberg MD, Between the Lines: Finding the Truth in Medical Literature.)
So it’s a feat when you get a good match like this.
I have much more to say later. Gotta run.
Thanks, Dave. It was a post I couldn’t help but write, as was the previous one.
I love your amplification of the point I’m making about research and accuracy.
Susannah, there is so much I loved about this post.
It reminded me of a girlfriend with a 6 year old and a lazy eye that needed an eye patch … she “hacked” the system, ditched the ugly patch and created beautiful fabric ones for her girl, then shared it all over the web.
So many things here …. such great info.
Thanks for writing!
Shelly
Got a link for those eye patches, Shelly??
I love that story!
I grew up in Princeton, NJ, where the mayor – Barbara Boggs Sigmund – rocked an eye patch that she coordinated with her outfits. She made it chic!
Susannah – great post – appreciated how you summarized the challenges and opportunities for connecting patients online in a meaningful way. I agree that the silos of information are a huge roadblock. I wish every healthcare technology company / developer would take note of the real implications of not sharing data or enabling the free flow of information. Thanks for starting the discussion. Katie (@copatientKV)
Thanks, Katie! Whenever I talk about that list of roadblocks/opportunities, people pick up different aspects to discuss more fully. The silo point resonates with people who are trying to connect data sources, like the C3N Project folks at Cincinnati Children’s. I’d love to see more people take it up as an issue, too.
Susannah, your compassionate observation and attention to rare disease communities is so moving. Thank you so much.
This is the second time that I’ve read the story about Burt and the phrase “all of them heard for the first time that day that they could live a normal life span” makes me tear up instantly. My daughter has M-CM, a recently identified genetic syndrome (1997) and our community is in a similar predicament, where we have no idea what life expectancy might be. Early on, some families were told not to expect their kids to live beyond early childhood. Now we know that outcomes vary quite a lot between individuals and early death is not the norm. The oldest person that we now know of is in her early 30’s and every time an adult with M-CM surfaces in our online community, it is very exciting.
Also nodding my head at this: ““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?”” Indeed.
We started a non-profit to try to build a longitudinal registry for M-CM, and we are now exploring leveraging Indivo X, a PCHR, with the idea that our families can then opt their records into research and complete research surveys through the platform.
I still get chills when I read Nell’s story – can you imagine what it was like when she told me the first time, in person?
I think what gets to me is that Burt Minow was one of many. Singular, maybe, in his good fortune when it comes to family, but representative of the potential of everyone “back then” who may have been relegated to an institution.
And all those families, sending out signals as if to other planets and suddenly getting a pingback. That also is now a poignant, “back then” sort of memory. And yet it isn’t. It’s still the case that there are some people who remain offline or unaware that they could tap into a network of people who share their condition.
What’s the “back then” of today that future generations will shake their heads at? Is it that a group of parents had to create the longitudinal registry for their children? Or will that be seen as the first rumblings of a citizen-scientist, open-research future?
“What’s the “back then” of today that future generations will shake their heads at? Is it that a group of parents had to create the longitudinal registry for their children?”
Yes, I think it will be how poorly we are leveraging our capacity to collect and use data.
People ask me how many people have M-CM. Nobody knows — a simple thing like that! The only number we have is how many individuals have been written about in the medical literature.
An example that boggles my mind is the situation of the undiagnosed, who are still in the lonely situation of pre-internet Burt. The NIH has a program that undiagnosed patients can apply for. These patients may or may not be accepted, my understanding is that very few are accepted. The accepted patients have their medical records combed through by investigators. Think boxes of paper. This program looks very closely at one individual at a time. It seems to me that it would be so much more powerful to assemble a database of undiagnosed cases so that you could start to match up people with similarities.
I wanted to share my experience with peer-to-peer support that provides something a medical supprot system can’t/doesn’t.
My daughter was diagnosed with hip dysplasia at 6 months old. It was a bolt from the blue – I knew absolutely nothing about the condition. (Basically, the hip joint is not developing correctly; in my daughter’s case the left hip joint was completely dislocated and the ball and socket were not forming.) She needed surgery and would then be in a full-body cast called a spica case for 12 weeks, followed by a brace for an undefined period of time.
We received excellent medical care at BC Children’s Hospital, but it’s a very, very busy pediatric orthopedic department, and I didn’t know what I didn’t know, so I didn’t ask any of the right questions. Fairly early on, after some Googling, I found http://www.hip-baby.org/ and its associated Yahoo forum group. It’s information for parents, from parents, and it covers everything you DON’T get from the hospital.
To begin with the practical support was more important than the emotional support – in fact the practical support formed a kind of emotional support, because it made the ‘unknown’ much less scary and more manageable. Things like what clothes your baby will be able to wear over a cast; and what equipment you should buy for your home; and how (how?!) to diaper a baby in a spica cast; and what to do when your attempts at diapering end in a disastrous mess.
It helped immeasurably to know that other people were facing exactly the same problems and worries and feelings as us – and doing it with such good humour that it comforted me to know that this wasn’t as utterly awful as it felt. There were parents in the group whose children had much more severe problems than my daughter; and then there were parents whose children had milder problems; and we were all made to feel equally welcome and valid members of the community.
The emotional support continued to be important after all the practical issues were becoming our new ‘normal’. These parents understood what it’s like to take your 9-month-old to a local community centre and see her watch the other babies crawling and playing.
Eventually, once my daughter was more or less in the clear, I left the group. She is now a running, jumping, spinning, climbing, rambunctious toddler; and continuing to read the stories of those affected by hip dysplasia was reducing me to tears on a regular basis, so I quit. Sometimes I feel bad about that, but I know the community is still there; and I check in very occasionally to give an update on our success story. I remember reading similar updates when I was in the thick of it, and finding them very positive and encouraging.
We’re not completely out of the woods; my daughter has annual x-rays, and if her hip joint doesn’t start developing more rapidly, may face another sminor surgery next year; so I may well find myself needing the online community’s support once again.
Apologies for the long comment – I’ve been waiting for an opportunity to say some of this for quite a while!
Ruth
No apology necessary for a long comment! It’s a tradition here on e-patients.net :) Sometimes we just haul off and turn comments into posts on their own. Thanks so much for sharing. Your (how?!) perfectly captured that moment of disbelief. Are there now YouTube videos to show people how to diaper a baby in a spica cast?
Indeed there are – a search on “diaper spica” brings up lots of results. Hip dysplasia is not a rare condition like Moebius Syndrome – it affects 1/1000 babies – so there are actually a lot of resources out there. They just mostly seem to come from the parent/patient community rather than health care organizations – though not exclusively.
Wonderful, wonderful stories, Ruth. Thanks so much for your generosity in sharing here.
There’s something about Susannah’s posts that brings out incredible stories. And that’s the nature of her work, I think: she digs way down deep and finds what’s really going on out there.
Your story illustrates that there’s much value to be received by people coping with a condition, and some of it is medical (from medical science) and a lot of it isn’t.
And both the Yahoo community and the YouTubes illustrate the incredible generosity of patients and families giving everything they’ve got – to each other. Inspiring.
Beautiful and Vital.
Hello Again Susannah,
I just finished a really good long chat with yet another newly diagnosed breast cancer patient. This lady came to me through my Mother. I have never met this woman before but given my double mastectomy not so long ago, she thought I could help.
Just a few weeks post single mastectomy, this lady has been struggling with the healing process. While she has a supportive husband, the medical community in her town (about 2 hours from me) has been less than stellar with getting her the emotional support she needs to cope with her new appearance as well as to make all the decisions that have to made moving forward. A very tough navigation indeed!
As I read through your article and each of these heartfelt messages, I think of this chat I had with her earlier. Just having someone to talk to, to share your story and your fears. That is a hack in and of itself :) We are taking an everyday thing like a conversation and turning it into an assistive tool. Our conversation is assisting her – helping her not feel alone, helping her plan out next steps post-surgery. It is a low-level hack but now this lady does not feel so alone anymore, isolated no more.
I hope this makes sense.
C
It makes beautiful sense. Thanks for sharing that story!
Susannah – It was great to meet you at the Moebius Syndrome Conference last week. We appreciate you coming to speak and meet our wonderful families and individuals with Moebius syndrome. We’ve come a long way in the last 22 years since my son was born and had no internet or method to find other families easily. That has now all changed and it was heartwarming to watch the families of young children with those precious little faces interacting. They will never be alone.
Vicki, you are a hero to me and to so many other people – thank you for all that you have done & will do. We’ve come a long way, indeed.
Suzanna,
Bravo on your presentation! That makes me think there should be an annual peer-to-peer list of best ideas from various patient communities. You have should the power of crowdsourcing all in one post.
Keep it up. You are a supernova of inspiration.
Carmen
Fantastic examples of the opportunity for technology to connect our humanity and provide real value. Thank you for telling these stories.
One element not mentioned and largely not yet possible involves using internet technology to assist in diagnosis. NORD did a study several years ago that showed that among people who received a rare disease diagnosis, over 1/3 took more than a year to be diagnosed and 1/6 took more than 6 years. Particularly with rare diseases, where most doctors have never seen what their patient may have and there are only a handful of highly specialized doctors in the country. The internet is naturally suited to more efficiently connect these parties together for earlier and more accurate diagnosis, but our medical licensing laws forbid it – this would be deemed practicing medicine across state lines. As we have more fully and tangibly begun to realize the benefits technology can deliver in this arena, I believe this needs to be our next battlefield to unlock additional value that can be measured in earlier diagnoses, lower cost of care, better outcomes, and reduced pain, suffering, and worry.
Susannah,
It’s one of the best pieces I have read so far about rare disease and the internet!I am writing an article on rare disease and social media and I will quote you.
Thanks so much, Kathi! If you need a formal citation:
Peer-to-peer Healthcare (Pew Research Center, 2011)
http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx
Health Online 2013 (Pew Research Center, 2013)
http://www.pewinternet.org/Reports/2013/Health-online.aspx