2018 update: Watch a 10-minute video that captures the essentials of peer health advice.
Someone recently asked me to name the most exciting innovation in health care today. I think he was hoping for a sexy technology tip, like an app that’s catching fire in the expert patient communities I follow.
Nope.
I’ve said it before and I’ll say it again: the most exciting innovation of the connected health era is…people talking with each other.
At the Pew Research Center we call it “peer-to-peer health care” and measure it with national survey data:
- 24% of U.S. adults got information or support from others who have the same health condition the last time they had a significant health issue.
Caregivers and those living with chronic conditions are more likely than other adults to seek peer advice and support.
It can happen online or offline, via email, phone, or on a message board. It can feel very basic, even ancient. As I said, not very sexy. Unless you think being human is sexy (I do).
What’s new is that technology allows us to widen the network of people we can talk with, increase the velocity of those conversations, inject them with more source material, then archive and make them searchable.
I bet you’ve seen it in the wild, if not in your own life:
- A reddit thread turns into an insulin pump tip swap (search for “diabetes”)
- Two moms chatting on Facebook prevent a hospitalization.
- People hack everyday objects to create assistive devices, then share their hacks with others. (Update: see also “Hacking home health care“)
And if you haven’t read it yet, Atul Gawande’s latest article, Slow Ideas, illustrates this idea perfectly. As he writes:
“People talking to people is still how the world’s standards change.”
He’s talking about clinicians. I’m talking about patients and caregivers. Imagine the velocity of innovation when those two groups work together, as they are at the C3N Project or Smart Patients, just to name two examples.
Tell me: Where do you see this happening? I’m always looking for more examples — please share!
Great post. We are launching a new version of our service http://www.meallogger.com that will enable mobile peer support and group counseling. As you requested for examples, would be happy to share feedback from our beta testers, which include breast cancer survivors and eating disorder patients. Did not know how else to reach you so posting here, please contact me if you are interested in hearing more.
Best,
Michael
Thank you! Please send me an email (sfox at pewinternet.org) or, if you suspect the Pew Research Center’s aggressive spam filter has prevented me from replying to your email (I try to at least say “got it” within 24 hours) please feel free give me a call: 202-419-4511.
Susannah — Thanks for your great article and for your availability. I’m a former Googler currently in the online health space.
I’ll followup with you in the near future about work I’m doing in a specific area of peer-to-peer health. You might find it interesting 🙂
Kevin
Of course!
A caveat: I follow a rule shared by a friend who works at the National Library of Medicine. I can’t provide private counsel to individuals, but I can answer questions asked “in public” such as in a conference hallway where other people can listen in, too. I count open threads like this as fair game.
When I do get an intriguing question, I often share it as a “Public Q&A” post — some examples.
But I’m also respectful of trade secrets and confidential tips/stories that people share with me. I count on my “spies everywhere” to help me stay up to date.
So: please do get in touch. If I can, I’ll be helpful.
.Totally agree that interaction between the different actors is the great change in healthcare.In this interaction, I would distinguish.
1.-Interaction between patients.An example of success is “PatientsLikeMe”
2.-Interaction of patients.-caregivers with the doctors. Examples of success are “Healthcaremagic” and “HealthTap”.
3.-Interaction between doctors.In “HealthTap” too is possible.
All interactions have many benefits for all.
The patient can ask a doctor online and get inmediate response.You can also share your experience with similar patients and get help and understanding.
The doctor maintains direct contact with the patient and learn to share their experiences with other doctors.
Everything you say is the essence of the term Healthcare Social Media which represents a breakthrough in healthcare.
Excellent post.
Thank you for those examples and the kind words.
I have seen tons of patient-to-patient or caregiver-to-caregiver examples of peer advice/support, but I haven’t seen as many patient-to-clinician success stories or (honestly, since my primary focus is on members of the public I haven’t focused on it) clinician-to-clinician networks.
You might be interested in this post and the conversation it sparked:
How many people use “ask a doctor” sites?
Thank you very much.As you said in the post the patient-physician interaction is too peer to peer.
Regards.
This is a fantastic post, thank you! I’m a PhD student in the midst of dissertation writing, and my topic is empowerment and agency in social media spaces in the context of HPV. Specifically, I’m looking at what empowerment looks like in these spaces in order to create a framework for participant empowerment. So far, I’m finding that lay experts are the ones leading conversation in some spaces, and when the expert is absent from the conversation, the lay expert takes the reins and leads conversation. The characteristics of these lay experts include personal experiences and direction to available resources for information (still exploring, so more to find). I’m hoping that the framework I create will be of use to the health community, as once these spaces are 1. Identified, and 2. Info sharing practices are understood (in the different spaces–as no one space is the same), the health community can gain an understanding of the needs expressed by the participants and design systems to better meet those needs.
Fascinating! Thanks so much for sharing. If you’re blogging as you go, can you link to your site?
Even more revolutionary, and what will strap a rocket on the back of rapid change, is the idea that DOCTORS and PATIENTS view their interaction as peer-to-peer instead of Titled Expert to Lowly Supplicant. That paternalistic view of the medical care conversation is, IMO, the root cause of much of the talking-past-each-other scenario we’re currently stuck with.
Meanwhile, the peer-to-peer network rocks. Although we need to be careful that the advice/input we get is based in science, not magical thinking …
Yes, yes, and yes – thanks, Casey! You captured a lot in a short comment, answering a question on many clinicians’ minds: What can I do to contribute? First, listen. Second, know that your education and training are still valued by even the most empowered patient or caregiver. That’s also what I’m planning to tell the federal gov’t health agency web council this week: understand where the conversation is happening and inject your fact-based advice and scientific information into it when it’s appropriate.
Good docs – and they far outnumber the not-good ones – get this approach instantly, because it’s how they already work. I’ve long held that the real threat to “business as usual” in medicine is doctors and patients teaming up, and really working together. Helping make that the norm is the core of the work that you do, and the message that I work to spread.
Got get ’em, Susannah!
Thanks! I’m catching up on my reading, including this post by Bryan Vartabedian, MD:
When the Audience Becomes the Publisher
It’s an example of a clinician who is listening to the public conversation, sees “magical thinking” (as you termed such misinformation) and speaks out. As he writes: “This situation illustrates why every physician needs to be part of the public dialog.”
Pew Research data show that people turn most often to a local clinician for advice, then friends & family, then peer patients. [EDIT: Note that we don’t ask about the actual order – this is more of a ranking.] Most of that interaction happens offline, but it’s shifting — and now is the time to get ready for the acceleration point of that shift.
Great post. People talking to people is exactly how the world’s standards change but first we have to make sure they are speaking the same language. At TrialReach we are focused on making vital connections between patients and any-sized medical research team and, most importantly, making sure all clinical trial information is easy for patients to understand. Would really value your input on how best to do this.
Thanks, Sarah!
My mission is to be a public service researcher — see above comment about the caveat attached to this. I often don’t have time to check out all the intriguing sites and ideas people send to me, but I can answer specific questions or point to what I hope is the most useful data we’ve published on a topic.
Regarding how to reach people, I’d cite the following broad outlines as a start:
– 6 in 10 US adults have gone online to answer a health question (80% of internet users). One-third of US adults (or about 6 in 10 internet users) have gone online to diagnose themselves or someone else. Caregivers and people with serious health concerns are even more likely to do both. So: big market.
– But if you drill down, few people look online for health information daily and, when they do, 8 in 10 go to a general search site like Google, Bing, or Yahoo. They aren’t likely to go to a dedicated health site. So: SEO or other means of popping up in search results remains very important.
– In the 13 years I’ve been tracking this field, there has been growth in the % of adults who go online but no change in the pattern of health information seeking. A local clinician is still the most popular source of health advice, followed by friends & family, followed by the internet (either search or, if someone’s dealing with a serious condition, fellow patients and caregivers). So: outreach to clinicians is still key since they are a highly-trusted source for the type of service you’re building.
– However, I never make predictions about the success or failure of an idea. I’m a “nowist” not a futurist, to borrow a phrase from Joi Ito.
Thanks Susannah. Very helpful; particularly the fact that there has been no change in the pattern of health information seeking. Best wishes from London, Sarah
It is very important what you say, Sussanah.6 of 10 people in U.S. seek health information on the net.
This can sometimes be a problem for patients
with “cyberchondria” porque involves self-diagnosis and self-treatment.Is essential control of health information by health professionals and remind people that the information does not replace your doctor’s visit.
Hi Susannah! Thank you for your post. In March of 2011, I was diagnosed with Prinzmetal’s angina by way of an emergency heart catheterization. I had turned blue at another hospital and had an 8mm ST elevation. I was discharged the next afternoon (it was a Sunday) from the cardiac unit , sent home with a whole list of new medications and told to avoid cigarette smoke. By Monday, I was having excruciating chest pain, so I called the new cardiologist’s office, he was on vacation for two weeks. No colleague would see me or even told me to go back to the ER. I was not even discharged with any emergency nitrates or instructions. I finally returned to the ER, and was admitted for observation, and the angina was brought under control. I could not understand what was happening to my body, so I turned to the internet. I found Inspire.com. Through countless hours of reading the endless threads on Prinzmetal’s, I was able to educate myself. I also learned about Microvascular Dysfunction, also known as endothelial dysfunction. I asked the new cardiologist if I could have this condition too, and he said probably, but the treatment was the same. My peers, or heart sisters have been life savers for me. We do not give medical advice, we do however share our stories, research, support, current treatments, links to videos, links to medical chats, links to journal articles, and information that we can share with our physicians. The people on my thread are predominantly women, but we do have some men with this illness. We come from all walks of life, all around the world, there are many with extensive medical background. This site is not just for heart, it is a support system for all types of health challenges. Personally, I have had to part ways with several cardiologists, and one major heart hospital that claims to recognize my illness. I am an empowered patient who has found strength in the peer to peer system. My hope is that some of the many doctors I have encountered can put their egos on the shelf and follow these same threads, shut their mouths, and open their minds and listen to what the patient is saying so we can improve our quality of care. Kindest regards.
Check out healtheo360.com. healtheo360 was started in 2012 with the vision of better connecting patients with their caregivers, family and friends so they could share their health related stories and learn from others who are “Just Like Them.”
healtheo360 was developed with one purpose in mind – To provide its members with a community to find support, encourage others, learn, inspire and belong
I’m sure you won’t be surprised to hear this, but I see peer-to-peer healthcare as absolutely essential in the ultra rare disease communities where patients and caregivers truly know more about the disease than all but maybe 10 doctors in the U.S. I’ve been witness to caregivers seeking advice and weighing in on decisions related to types of shunts, ports, and other devices, whether to go to the ER, whether to seek a specific surgery such as a shunt revision or a procedure like lumbar puncture to gauge hydrocephalus, what complication might be the root cause of a group of symptoms (a sub-diagnosis, as it were), what types of tests to request, prescriptions to request (and in what dosages), etc. to name but a few. In other situations, one might be scared away from seeking or offering such advice from non-medical personnel until you realize that, except for a select few physicians, these truly are the experts. And unfortunately, we’ve witnessed far too many non-expert physicians be wrong about given circumstances and the patient/caregivers be right. As such, certain ones become the community experts on a given topic. The good physicians, the ones who truly *are* the experts in these conditions actually do listen to the patients/caregivers and their advice or sense of a situation more than those physicians who are not the experts, sadly.
I like the way you’ve broken down peer-to-peer health care into its most essential components. Something I took away from Gawande’s piece was the danger in relying on technological solutions to human problems. I hope this isn’t the direction we’re heading as entrepreneurs rush into the online health space. I think it’s true that “people talking to people” holds the most promise among every app/piece of wearable tech/online widget, but it can take a lot of vigilance to keep that in focus.
It’s happening all the time, all around and the results are, literally, life-changing. I experienced it firsthand when I discovered the online Cystic Fibrosis community a few years ago and it has completely transformed my healthcare and my life (no exaggeration). I think it’s important to highlight that it’s not only warm and mushy support that we share in these glimmering examples of peer-to-peer healthcare, but critical insights about ALL aspects of living with an all encompassing chronic illness like CF. I’ve learned about clinical trials, medication interactions, supplements, tricks for reducing hemoptysis (dangerous lung bleeds). I’ve gotten minute-by-minute guidance on how to handle tricky blood sugar situations from CF-related diabetes, invaluable advice on health insurance, and tips for avoiding dangerous bacteria in everyday life and for handling crippling immunological and rheumatological flares.
My healthcare providers are wonderful, smart, informed and up-to-date and they are happy to share as much information as they can and I want (which is usually a lot!), but much of the wisdom I’ve gotten from from peers simply is not within the realm of their expertise. It is the kind of wisdom you get only from living and breathing with this illness every single day of your life outside of clinic and outside of the confines of the hospital walls. Peer-to-peer healthcare enables us to share that expertise with each other, to collaborate, to help each other learn from our successes and our failures so hopefully not as many people have to make them again. It lets us pool our resources, information, brain power and experiences to improve ALL of our healthcare. It is synergy in action.
I strongly believe that the next big frontier in healthcare is finding a way to expand this kind of collaboration to all stakeholders — not only connecting patients and healthcare providers, but researchers, advocacy organizations, caregivers, insurers etc. We can pool our collective knowledge, cross contaminate our expertise and collaborate in ways that make healthcare more efficient and better for everyone.
Kudos for a great post, Susannah! As usual, you nailed it succinctly and eloquently. I, too, believe that we are witnessing a dramatic shift in the paradigm of health/illness and how we both deliver and receive care. The perfect storm of technology, aging population, mobile society (with a decrease of locally connected extended families) and an increase in the prevalence of chronic disease and longevity of those with rare diseases, as well as an increased cost of healthcare delivery have combined to create ability, interest and need to foster development of peer-to-peer health communication and connection online. As you know, I am fascinated by the unique interactive qualities of patient/health blogs versus the more static activity of traditional journaling (http://www.jmir.org/2012/5/e143/). I believe that connecting through online peer-to-peer support will continue to evolve into an essential component of quality, effective health care.
All the best,
Pam Ressler
Thanks, Pam! You are building the evidence base, which I think is what is going to help convince people that this is real. I’m deeply appreciative of what you do.
Sometimes you run into a picture or painting that is perfect. No filters needed, no change in contrast, cropping, nothing, just perfect.
Those ‘images’ of something need to stay genuine, without change. Off course one could add, or put a frame around it. With being disrespectful to others : Susannah : keep it, just like this, it is the core of what is needed to change health(care) ….
What a great post and even greater comments. I share many of the sentiments above. I’m hopeful that we’re on to something with the C3N project, encouraging and supporting these peer to peer networks to work together and create better health and care.
My first reaction was dah! Then I thought 35 years was not that slow.
If only our health care system was not so afraid of letting patients talk to each other and teach each other. Patients are our must under utilized, plentiful, and least expensive resource. In the game of health care it is time that they stopped being treated as a ball to be kicked around and instead be made part of the team..
!!! Kate Lorig, everyone. Wow. And yes, I think patients are picking up the ball themselves and running with it.
I haven’t chimed in.. Sometimes I’m slow to think or maybe fast to think but slow to type. We are members of Facebook community of families who have kids with CHARGE Syndrome. It has almost 3200 members from all over the world. It’s truly a collaboration.
As an example, someone asked a medical question last night and 20 hours later had 22 comments / recommendations. One mom wrote in with confession that she had missed 1 of her son’s 24 meds (recently discharged from the hospital)- and she got over 20 “you’re doing fantastic, you got this, it gets easier” messages.
Could we welcome Drs to join us? For sure. We have other professionals – geneticists, deaf-blind teachers, teachers of visually impaired, OT/PT/SLP, school psychologists — the Drs would be very welcome. We can all be peer-to-peer.
I recently gave a presentation at the CHARGE Syndrome Foundation Conference on “We are in CHARGE”. I had two main points (a) how diagnosis or prognosis can’t limit what our children can accomplish (b) we are a community, lean on each other, we are in this together. The session was augmented by 8 young adults with CHARGE giving their personal stories of “doctors told my mom I would never walk/talk/live/etc”, “Speech Therapist said that a deaf child couldn’t study Spanish” – I could barely hold it together to continue my talk – we have to build communities for support – meeting people where they are and believing in them. We would welcome additional voices in the conversation.
I hope you are also studying peer-to-peer networking that is taking place on social networking sites, note just specialized forums or health sites. A lot of informal peer support is unmoderated and unseen, especially in research that only looks at blogs or forums.
The fear clinicians have is that people give bad advice to one another, and it’s true, I’ve seen it plenty of times. But I’ve also seen good advice and we have to find a way to accept the baby with the bathwater, especially as it’s happening organically and can’t be controlled.
Late to the party here:
–Teens learning to manage/live with chronic illnesses are one active P2P area. Sick Kids in Toronto has been an active promoter for years. (Shameless promotion: My sister Dr. Miriam Kaufman is chief of adolescent medicine.)
–Facebook hosts at least one group, I’m Not Drunk; I Have MS.
–Actually, two: One for people affected by contaminated steroid injections.
–OK, three: ProPublica’s patient harm/medical malpractice community.
–One super-active site for folks undergoing hip/knee replacements: Bonesmart. It’s quite old-fashioned; like a list-serve.
–What’s missing: Advocacy for cost reductions for therapies, activism against (even awareness of) hyping of treatments/devices/facilities by providers getting paid for promotion and/or self-dealing.
No one is ever late to a party online and the conversation is never over. Thanks for these great tips and ideas!
Outstanding post, Susannah, and a breath of fresh air to blow away the relentless tech hype.
The best digital health app is: conversation.
“The best digital health app is: conversation.”
Love that, Andrew. I’m going to go embroider that on a pillow . . .
And outstanding recap!
Peer2peer support is an unrecognised – but essential – component of eating disorder recovery. Many people with eating disorders – adults and males, not just young women – turn to the internet to seek others who can offer non-judgmental support and understanding. Many of them unfortunately end up on pro-ED sites, but they are there to seek community. More and more online pro-recovery pages and forums are available and what we offer is exactly that: non-judgmental support and understanding, but we also offer advice and ideas, challenge disordered eating and help people learn alternative coping skills while they struggle to seek a better life.
We certainly do NOT take the place of a professional clinical team and encourage all members to find ED-trained clinicians, but we fill a gap: we know what it feels like, we’ve done or seen it all before, we are there at all hours no matter where you are in the world, and we always provide a supportive voice for recovery.
Thank you. The ED community is fighting the good fight. Being there at all hours is probably one of the more essential services in peer-to-peer health care.
I was just looking at Luis Luque’s slides about pro-ana videos as an example of the “bad” side of social media. I’d be interested in what you think:
The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination
If you are looking for projects playing with people-talking-with-each-other ideas, you should definitely take a look at http://www.myopennotes.org/
Here, the actors involved were doctors and patients, the former had to share their visit notes with the latter, electronically, for a period of one year. At the end of the experiment, 99% of the patients wanted it to continue and 0% of the doctors elected to stop it. There are a few other interesting and actually surprising outputs, this is just my favorite.
However, it is not difficult to understand that this approach (re)built trust among them and people love having around people they can trust.
Thank you! That’s my favorite stat of the year, too — I mean, when do you get 99% agreement among any study participants??
This is why I’m so appreciative of Kate Lorig’s pioneering work and the research that Pam Ressler and others are doing, too, to build the evidence base for patient involvement, for storytelling, for peer-to-peer support.
I also appreciate your reminder to look at the cultural artifacts that endure — the relationship between an IRL clinician and a patient, the appointment in a bricks-and-mortar clinic. Yes, we’re building amazing tools for home monitoring and self-tracking (another research interest of mine) but let’s not forget where people go when they really need help — offline, to someone or somewhere they trust.
Thanks for a great post, Susannah. My son has a rare genetic syndrome (Coffin-Lowry Syndrome) and our Facebook and Yahoo groups are a source not only of information but also support, capacity building, kinship, perspective, creative problem solving and motivation. In particular, one of the best things people say about our Facebook group is that the images of kids with CLS that appear in scientiࡦic publications are dehumanizing and scary, paralyzing newly diagnosed parents into avoidance. Facebook lets us see great snapshots of real people living real lives looking strong and beautiful. Not sure how that could happen any other way. (P.S. We met in DC in Feb for dinner with e-Patient Dave at the IOM meeting. Great meeting you then!)
Hey Cristin, great to reconnect and thanks so much for sharing that insight about the power of images.
Another example is the Flickr set: What does Marfan Syndrome look like?. And there’s the Moebius Syndrome gallery.
You can’t look at those images and think the same way about Marfan or Moebius. It’s all about honoring people as individuals, seeing their beauty, inside & out.
I object that “healthcare before illness” has no play here, it’s all about “treatment of illness”. That’s alright, but call it that, leavvng place and respect for the other. Why is breast health incidental before cancer? Aren’t we taking the sufficiency of life too much for granted just like we take our docs’ suffiency too much for granted (‘gotta go see my doc’). Fact is, the world is running down rapidly, and it takes attention to survive it. Can’t be bothered? the docs sure don’t give you the message. the world was more sufficient when their teachers trained, so are you supposed to live by their old messages? Wake up to Japanese breast health or take the consequences!
I find when consumers are investigating Complementary and Alternative Medicine (CAM), conversations are particularly powerful. As more people are questioning the “doctor’s orders”, trustworthy conversations fosters their desire for knowledge, independence and control.
For example, an Acupuncturist helped me discover I have Celiac Disease, after a lengthy discussion with, and strong recommendation from, a colleague convinced me to see her. (It had been nearly a year – various MD visits, tests, prescriptions and no lasting resolution – trying the more traditional route.)
As another example of the power of conversation, the Institute of Functional Medicine (http://www.functionalmedicine.org/) is making great progress, (re)training clinicians to diagnose and treat root causes, not just symptoms.
I have found all sorts of great resources online related to Celiac Disease, which has certainly made it much easier to navigate this new lifestyle. And of course many many dinner conversations (usually when the bread comes out) have ensued 🙂
When I queried the Inst. for Functional Medicine for a trained local doctor, and then reviewed that doctor, she had been sanctioned
for practicing for 2 years w/o a licence and had some wierd reviews. Just be careful.
Susannah, great post and great comments, as usual!
The first line of Emily Kramer-Golinkoff’s comment, in particular, caught my attention. She points to what I have seen becomes a daily reality:
“It’s happening all the time, all around and the results are, literally, life-changing. ”
As Kate Lorig notes the patients are the most under-utilized resource of the health care system. Even worse, despite the remarkable work done by so many in countless high-quality private online communities, their growing influence remains the most under-reported reform agent. So, a BIG thank you for pointing your audience back to what’s happening, still mostly under the radar.
For those who experience the deep knowledge base that good, healthy medical networked communities invariably generate, the next question has to be (paraphrasing Jay Rosen) “When the networked patients know more than the doctors, what are good doctors supposed to do? .
Just judging from my personal experience — I don’t think I know more; I think I know different stuff. As a networked patient, I bring a deep, underutilized and really important knowledge base and expertise that is decidedly different than that which my doctor provides. In the next era of medicine, I believe the “good doctor” will be one that participates in and eagerly encourages sharing from all the different experts, helping to transform healthcare into a truly open, respectful, efficient, empowering and just all around improved collaboration.
Hi Susannah,
thanks for the post.
Please find at http://www.socialenterprise.it/en/index.php/2011/08/11/pharma-2-0-pharmaceutical-companies-get-social-too/ a not so recent but I hope helpful post where I collected plenty of references of patients-to-patients, doctors-to-doctors, mixed examples of healthcare 2.0 communities used for an article on AboutPharma.
Best,
Emanuele
Another great one Susannah, I see such an incredible amount of learning on twitter, it’s hard to choose just one, but I’m convinced there’s a vast amount of intelligence acceleration going on.
re Gawande’s piece:
One on one communication is key, but perhaps in the examples he shows, it’s because of something subtler, confirmation bias. http://en.wikipedia.org/wiki/Confirmation_bias
It seems many of the stories were about people not wanting to change, and discounting information that confirms existing beliefs. When something is invisible, it make it even harder to overcome, like hand-washing. One woman didn’t want to be “doing something wrong” or marked for it.
My sense is that when something new comes along, like anesthetics, there’s less (although there was some from docs who believed pain was necessary) confirmation bias to overcome. When you are just changing an existing workflow, there’s much more confirmation bias, and takes time to educate and build trust on the new way of doing things. Adopting new technology is easier because it didn’t exist before, but hand washing had always existed, they just didn’t know why it was important.
What do you think? Is changing the workflow different because you have to change you mind about what’s right?
This comment came in while I was on vacation and I’ve been thinking about it ever since. I don’t have the answer, but I think we now have the question.
Thanks so much for this article. It’s great to see so many people realising that online patient groups are not a bunch of people with google-itis. We are so often state of the art information sharing vehicles complete with different cultures, personalities and priorities – just like real communities.
I’m the founder and editor of thepowerofpoop.com which is a patient information resource on fecal transplant. Due to the ‘ick factor’ the medical community have been slow to research and embrace this therapy. I am certain that it is digestive illness patients like us taking matters into our own hands that will boot the mainstream medical authorities into action. They can’t bare to think we might be doing it without their permission. And the last thing we all want to be doing is at home fecal transplants without medical supervision, but some people have no choice.
Peer-to-peer healthcare (conversations between patients) injects “humanity” and a dose of “you’re not alone” into the patient experience. But my experience wasn’t always successful. I encountered patient communities that were populated with people like me: newly diagnosed and scared. Or experienced patients who were suffering outloud. Those who had overcome our disease went back to living their lives and left the forums behind (as did I, in all honesty). This leaves a distorted view of what our disease looks like.
The most unfortunate peer-to-peer connection I made was with a woman at the end-stage of her disease. I was just at the beginning, and though we shared a diagnosis, our prognoses were entirely different.
Perhaps we could begin talking about how to strengthen these communities, simplify engagement, and apply some retention strategies so that all facets of living with (in my case) a chronic disease are available.
Susannah,
I love your blog post, and have linked to it on our site. I am a physician who was diagnosed with RA while still a resident. My experience has led me to found a company dedicated to collecting and studying information from physicians suffering with chronic disease. When given a tool for chronicling their experiences, decisions, and outcomes, doctors have an opportunity to provide leading edge information and add insights which can help improve outcomes for the broader patient community. Please take a look!
Sincerely,
Jake Childers, M.D.
http://www.nequalsyou.com
Thank you! I’m so glad that this post continues to circulate — I love the idea of n=you. Looking forward to exploring the site.
Little late to the party. There’s a saying in Mexico, “It’s better to be on time than to be invited.” Just a few thoughts:
“But if you drill down, few people look online for health information daily and, when they do, 8 in 10 go to a general search site like Google, Bing, or Yahoo.” ~Susannah Fox
This insight begs the question, “How could health searches change/improve significantly? How have searches for information changed in other industries?” Here’s a sampling of sites that are better than Google for certain niche searches:
Finding past friends/acquaintances: Facebook
Finding a good local restaurant: Yelp
Finding your next vacation destination: TripAdvisor
Deciding on the next book to read: Goodreads (bought by Amazon)
Which app to download: App Store
A key to all of these is “People talking to people” (peer-to-peer), but that’s not enough. If it’s just “people talking” then Google will generally be better at understanding and surfacing insights than these individual sites/apps. We search on these other sites because they do a fantastic job of allowing the crowd to curate recommendations and deliver them to us in bite sized chunks, usually in the form of “average rating” and “most helpful/credible reviews”.
You’re the expert Susannah, but I would wager that most frequent Internet users do not go a single week without looking at some average rating/most helpful review before making a decision. What if we could get this human curation >> relevant insight revolution going for healthcare as well? #whatifhc At least that’s what we’re dreaming about over at Feelalike. Hope to have a chance to meet you at MedX.
Any thoughts/feedback?
Brett, this is awesome. I hadn’t thought it through in that way but you are exactly right. Today is a “writing day” for me but I’m going to chew this over while I’m typing — and I invite anyone else to weigh in with more examples, counter-examples, opinions, dreams!
Thank you for the reply, Susannah. Of course I forgot to mention one of the biggies: Pinterest. Another great example of how encouraging people to curate (pin, repin, like) can outcompete your standard search engine (Google Images) and drive decision making. For example:
“Harvard Business Review found that 21% of Pinterest users had bought an item in a store after pinning, repinning, or liking the item on the site.”
http://www.businessinsider.com/pinterest-drives-offline-retail-2013-8#ixzz2ebhOIiYd
At the Center for Digital Behavior (CDB) at UCLA, we agree that “people talking to each other” remains the most important aspect in moving forward with health technologies. One of our social media-based studies, the Harnessing Online Peer Education study (HOPE), used peer leaders to educate at-risk individuals about HIV, general health and HIV testing. These peer leaders were recruited from the same high-risk population, and trained to engage the participants individually or as a group using many different tools on Facebook (e.g. private messages or group posts). The results were encouraging; we found a significant increase in HIV testing behavior among participants in the intervention group. We determined that a major factor in this change was the use of the peer educators. The peer educators were individuals from the same community as the participants and have struggled through similar barriers and issues in HIV prevention – making it easier for the participants to digest and to relate to the information.
Yes! The “just-in-time someone-like-me” is very powerful when it comes to sexual health decisions. Do you know the organization LoveHeals? You might be interested in this post.
Hi Susannah,
Sorry I’m a bit late for this discussion but would like to introduce HelpAround – our location-based safety net for people with diabetes, helping them handle the frequent lifestyle crises associated with a chronic condition by identify nearby diabetes helpers like them.
You can see our video and download HelpAround here: http://helparound.co
Yishai
Suzanna, I came across your post and this thread while searching for P2P medical cost sharing. My wife and I belong to a fantastic medical cost sharing association called Samaritan Ministries International, where we carry one another’s financial burdens incurred from medical costs. Yet, I can envision an app that facilitates direct, P2P cost sharing that reduces (or eliminates) the administrative costs associated with bookkeeping.
Have you encountered anything like this?
Thanks!
This is a great post. Peer-peer healthcare will help patient build confidence towards their recovery. What is challenging today is that there’s no enough education material those are customized to the needs of the patients. While it is great to be talking to someone who has experienced similar health conditions, some amount of patient education is inevitable for positive health outcomes. our product RippleCARE, a specialty driven patient engagement platform, is up and running in hospitals across the USA, bridges the gap in care delivery and help providers extend care beyond hospital walls. Our data suggests we have contributed in improving both health outcomes and overall patient experience.
Thanks for the comment, Raghav! I’m always interested in learning about tools, platform, & other solutions related to improving health outcomes. My quick read of your site tells me that you are plugging into the established information pipelines — makes sense, given the current market. I’d be interested to know about companies and organizations plugging into the emerging information pipeline, that of peer to peer networks.
For example, how might we feed good information into the diabetes online community, which has been shown to be vibrant and useful to people with diabetes? See:
Diabetes Online Community User Perceptions of Successful Aging With Diabetes: Analysis of a #DSMA Tweet Chat by Michelle L Litchman, Christopher Snider, Linda S Edelman, Sarah E Wawrzynski, Perry M Gee (JMIR Aging; 22.06.2018)
For more examples, see: Peer to Peer Health Advice (my collection on Wakelet)
Muchas gracias Susannah por el post y el video. Soy una apasionada de la belleza y en mis ratos libres me gusta investigar en lo relacionado con la medicina. Sobretodo en los avances de tecnología.