Reddit is a massive Petri dish of human conversation, rife with peer-to-peer health encounters, so I was thrilled when Jane Sarasohn-Kahn alerted me to this article: “People Are Flocking to the Internet to Crowdsource Their STD Diagnosis—Yes, Really.” It focuses on a subreddit (aka online community) devoted to sexually-transmitted diseases (STDs).
Kudos to Parade for publishing an excellent summary of research that is otherwise inaccessible to most of its 54 million readers. I was able to get a copy of the 8-paragraph Journal of the American Medical Association article (which at a “rental” rate of $9 works out to just over a dollar per paragraph, but I digress).
Alicia Nobles and her team of researchers found:
- Nearly 17,000 posts were written on r/STD between 2010-19.
- 3,375 posts were written in 2018 alone.
- 87% of posts requesting a crowd-diagnosis received a reply.
- Median time for first response: 3 hours.
- Participant demographics, accuracy of the advice, and what happened next were not investigated.
To JAMA’s readership, crowd-diagnosis may sound crazy. To people who spend time in online communities, it’s obvious.
For me, it’s another example of how people are able to find and help each other online.
I’ve been working on a model to help explain the stages of peer health connection and I’d love to get feedback on it.
The zero stage is when someone feels completely alone. They are all questions, no answers. Maybe they are embarrassed about their symptoms. Maybe they don’t have anyone to turn to. Maybe they can’t afford the time or cost of seeing a clinician. Their needs are not being met by mainstream health care (and the worst part is, their needs may be invisible to people with resources, like public health agencies, who could help). The 3am Dr. Google consult is a stage zero archetype.
The first stage of peer connection is when someone finds one other person like them, one other human being who can say, “I’ve been there, too.” This is a magic moment! It can happen online or offline, out in the open or behind a screen name, and even if it lasts only for a moment, it can change someone’s path.
The existence of the r/STD community is an example of the first stage of peer connection. For every one person brave enough to post their question, there are many who are silently following the conversation. They count, too, those lurkers, because now they know they are not alone in seeking answers to uncomfortable questions. They know where they can find answers when they need them — and maybe advise friends who are in the same quandary.
The second stage of peer-to-peer health care is when a problem is solved by the community that has formed. Remember, the problem that someone is trying to solve may not be visible to or deemed worthy by mainstream institutions. Public health experts may be alarmed that people are turning first to an online community to get a clue about their symptoms, but look at the response times. How many people could get what they judge to be a good-enough answer to a very specific health question within a few hours? r/STD is filling a need.
The authors of the study point in the direction of the third stage of peer health connection: When people with resources, such as clinicians and government agencies, take the community seriously and start contributing their expertise. As they write:
Health care professionals could partner with social media outlets to promote the potential benefits of crowd-diagnosis while suppressing potential harms, for example by having trained professionals respond to posts to better diagnose and make referrals to health care centers.
(Nobles AL, Leas EC, Althouse BM, et al. Requests for Diagnoses of Sexually Transmitted Diseases on a Social Media Platform. JAMA. 2019;322(17):1712–1713. doi:10.1001/jama.2019.14390)
John Ayers, a co-author of the study, told NBC News:
“People want real interactions with real people, and they can get that on social media.” …instead of trying to corral patients away from Reddit and back into the clinic, experts should “go to them and help them.”
“Society is not going to change to match the strategy that we as the experts have. We need to pivot. And one way we can pivot is responding to crowd diagnosis.”
“More people turn to Reddit, social media for STD diagnosis,” by Erika Edwards, Nov. 5, 2019.
I appreciate how the researchers take r/STD seriously and shine a light on a path forward. How might we convince public health experts, clinicians, entrepreneurs, and others to do the same?
What do you think of the model I outline above? What other examples have you seen of stage one, two, or three peer health connections? Please comment below.
Image by Véronique Debord-Lazaro on Flickr.
This is such an excellent example the power of peer health support, especially in the context of sensitive or often stigmatized diagnoses and conditions. I wanted to add to
zero stage that in addition to feeling alone or embarrassed, there may be significant feelings of fear, anxiety, guilt, shame, and even trauma. Depending on the age of the individual, a teenager or young adult may not be able to discuss their concerns with their family. They may be too afraid to ask for their parents or guardians to schedule an appointment for their symptoms. They may be afraid to schedule the appointment themselves for fears the family doctor “may say something to their parents, family, guardian or their parents will be alerted to their condition via medical billing or insurance claims conditions. There may be cultural barriers to seeking medical attention. There may also be the concerns of violence and abuse. With all of these significant barriers in place, it is a wonderful thing to have peer health support on SoMe to turn to to navigate the situation and get the care and support that is needed. This is why more than ever, we need credible content on social media to serve as a landmark reference point, especially in the arena of sensitive, stigmatized diagnoses. If doctors and caregivers, as well as those in science, public health, digital technology, and patient education do not make the efforts to meet patients online, there is no shortage of misinformation and quackery readily available. Thanks for continuing to highlight the power of peer health support!
Thanks, Grace! 100% agree with you. When I started last year to list all the groups of people who might fall into the category of “my health questions are not being answered, my needs are not being met” I filled a page with examples, eventually layering Post-it notes, like feathers or scales. At the top of the list: Anyone who might be held back by fear, stigma, shame, family restrictions, etc. as you name above.
To illustrate, here’s data from our 2018 national survey of 14- to 22-year-olds in the U.S.:
LGBTQ youth are far more likely than straight youth to report having gone online to try to find information about depression (76%, compared to 32%), anxiety (75%, compared to 36%), sleep disorders (54%, compared to 22%), and “other mental health issues” (24%, compared to 4%).
81% of LGBTQ youth say they have watched or read other people’s health stories online, compared to 57% of straight youth.
More than one in four (28%) LGBTQ young people report having shared their own health stories online, compared to 13% of their straight peers.
How might we support people who currently feel alone (stage zero)? How might we support the organizations that are building safe spaces for connection (stage one)? How might we help peer communities build their problem-solving skills (stage two)? How might we help peer communities communicate and partner with mainstream health care (stage three)? How might we help mainstream health care recognize the potential being dammed up in peer communities (stage three)?
This is the focus of my work these days, so stay tuned for more! And thank you for taking the time to think along with me.
Really interesting and not surprising at all. I find the quality of on-line forums can be as variable (and sometimes as dubious) as Dr. Google. But I’ve often seen somebody with something puzzling that they think is minor (or something they “don’t want to bother the doctor” with), pointed to emergency care or urgent phone call to doctor because the community had greater experience and recognized this symptom needs medical care and where’s the best place to get it. I’ve also seen people willing to consider an idea just because they were listened to – clinicians don’t always have the time, or make the time.
I can’t tell you how happy I am to see researchers publishing about the value of peer-to-peer support and to underscore the need for experts, organizations and governmental agencies to become actively involved in these conversations. We need that research to get more buy-in from the health care professional community. That’s why I admire what Alicia Staley and Deanna Attai have been able to accomplish together with BCSM on Twitter.
I do like your stages of peer connection. I haven’t really thought of peer support in that kind of way, but it makes a lot of sense. The model I largely used while building my food allergy community was Maslow’s Hierarchy of Needs.
People participate in an online community in different stages of the hierarchy, but largely the people who join as new members are often the bottom of the hierarchy with basic human needs due to a new diagnosis or serious issue arising with their health. From there, they can move to the safety and security stage, and beyond to the higher stages as they become more empowered with their health. I found loyal members mostly in the belonging stage, and people who volunteered in the social or self-esteem/ego stages. The members advancing to the self-actualization stage became staff members of the community or left the community and/or became less active to start their own personal work – such as starting a blog, or a food allergy business, etc.
Amy Jo Kim from Stanford, who authored the book, Community Building on the Web, used Maslow’s hierarchy to explain community building. I applied what she shared in her book and expanded on it for understanding what motivated members of my community in terms of their needs.
As for lurkers – I completely agree! Over the years, I heard from people privately who had been lurking and who would tell me how helpful the community had been. It gave them that feeling of not being alone, but it also gave them value in terms of support and information sharing. When I respond on social, I’m always thinking about who’s reading who may also find value in my comments.
Lynda, I’m following up to say thank you for the book tip! I found the Google Books link for Community Building on the Web and the public version includes Amy Jo Kim’s interpretation of Maslow’s hierarchy for online communities.
For example, at the base of Maslow’s pyramid is “physiological needs” like food & shelter — for an online community the parallel is system access, the ability to maintain one’s online identity. At the very top, where Maslow has “self-actualization,” Kim places “the ability to take on a community role that develops skills and opens up new opportunities.”
Again, thank you for this pointer!
You are welcome!
Thinking some more – your stage 2 is also where peer-led research would go. Maybe a phase 2b? I work with a group of parents who are doing just that. They found the researchers weren’t answering the questions they needed to be answered to take care of their children’s health, so they got PCORI (and other) funding and now partner with researchers to answer the questions that the parents want answered, and then submit it for publication in major medical journals.
Unfortunately, like a lot of laypeople, Kim misunderstands Maslow’s hierarchy of needs. It is a misnomer (and contrary to what Maslow himself wrote) that one needs to completely meet the lower-level needs before a person can pay attention and/or meet the higher-level needs:
“This statement might give the false impression that a need must be satisfied 100 percent before the next need emerges. In actual fact, most members of our society who are normal are partially satisfied in all their basic needs and partially unsatisfied in all their basic needs at the same time.”
(Maslow, 1987)
Also, while some few members of an online community may want to take on a greater community role, I think many (most?) members (in my experience) are quite happy at just being an old-timer member of the community, with no greater well-defined role. I wouldn’t say such members are less “self-actualized” in their community than those who do want to take on a greater community role.
Interesting discussion!
I’m going to agree with you, John. Can they be in more than one stage at the same time, yes.
In applying it when I was working with my online community for parents raising children with food allergies, I found that people had needs based on their current situation, and in some cases they were addressing needs in more than one stage at a time.
For example, the parents may have been doing well and been comfortable in a higher level stage, say, becoming an advocate. And then their child had an anaphylactic reaction, which knocked them off their feet emotionally and took them right back to addressing their own and their child’s needs in the safety and security stage.
Thanks to both of you for the insights & clarification. I found this 1943 article that appears to be the original version of Maslow’s A Theory of Human Motivation in case anyone else wants to dig in.
The image that I’m picturing when thinking about how a person or a group moves through stages of peer-to-peer health care is less of a pyramid, more of a nautilus shell. We loop back to the beginning as we encounter new problems or setbacks. We also loop back to welcome new members.
Again, thanks for pushing my thinking and adding these great questions & ideas!
It just occurred to me that applying Maslow to a community assumes that the community has evolved to the point where it has an identity. I’ve long been puzzled (as I’m sure I’ve mentioned) that there’s a precursor issue that I wish sociologists would study:
What’s the process by which some nascent communities acquire a brain, a heart, a soul, an identity – and others don’t?
My kidney cancer community has a decades-long identity, which initially grew (I’m told) out of the work & guidance of its founder Steve Dunn. In contrast, the most common cancer in the world (basal cell carcinoma) has a few limp, wimpy collections of “whatever” people. A strong individual leader helps, but is that sufficient?? I doubt it.
(I shudder to think about Reddit itself having a soul, and I imagine it’s the subreddits that have distinctive identities)
First, comments on the Parade article:
– I wonder how much Reddit’s ability to let you be anonymous affects things.
– “Try getting a doctor’s appointment in 24 hours” – wasn’t it you who pointed out years ago that sometimes people make an appointment AND then turn to Dr. Google while waiting? (I note this because some think it’s either-or, which isn’t true.)
I don’t know why this is such a mystery in medicine when it’s normal in other industries. I think it ties in with Jane’s book HealthConsuming, which I’ve belatedly just started reading: people seek what they want, whether or not anyone else wants it! And sometimes that equals “authority, plus DIY while I’m waiting.” (Today while waiting on hold for Southwest Airlines I happened to find the answer myself.)
– “Testing is the only way for someone to know if they have a sexually transmitted infection,” [a CDC researcher] says. Perhaps – but what if someone will go to ALL lengths to try to solve their problem in absolute stealth? Thinkers need to consider that sufferers may have other (or additional) priorities, not just the thing doctors are trained to seek: certainty. (Again, see consumerism, where empowered people may choose their own path.)
More thoughts in the next comment.
Next, returning from Parade to your post:
“To JAMA’s readership, crowd-diagnosis may sound crazy” Again – see consumerism; what docs are taught to value (with good reason) vs what people in need might also value. A cruel, familiar, valid way to view it: a teenager who feels “I’d rather die than have my mother find out.” If we really value care as the sufferer defines it, we cannot overlook this issue. What if people are scared to seek conventional care?
[Of course throughout this there are echoes of the abortion debate but that’s not what we’re here for.]
– “instead of trying to corral patients away from Reddit and back into the clinic, experts should ‘go to them and help them.'” – This echoes this weekend’s too-familiar Twitter debate about Coronavirus: again doctors are saying “You stupid patients, stop asking Twitter for medical information!” In short, the answer isn’t “Stop thinking for yourselves, you idiots,” it’s to improve people’s abilities.
On Saturday I said, “Professionals, please realize : seeking information is a form of engagement! If people are doing it unwisely, use your access privilege and knowledge to guide them/us, not push them underground! Be great health leaders!”
Googling is a sign of patient engagement. If people aren’t good at it, help them! Or as our pal Wendy Sue Swanson MD says, “There’s crap on the internet. It’s our job to get out there and balance it.”
Final comment will be about your proposed model…
Finally, your proposed model.
First: meta: I really, really want to find someone who can point to similar models from other fields. There must be a field where the transition from “I’m alone” to “OMG I’m NOT alone!” has been analyzed. What might we learn from those fields? What other state changes accompany that moment?
Stage 1 – “I’m not alone”: my own case …. I’d never even heard of someone in my circles with kidney cancer. I knew full well that my odds were “grim,” as several websites phrased it, so I had the incredible moment of not just meeting other patients, but meeting some who’d been diagnosed many years earlier and weren’t dead yet. When you’re willing to make deals with the devil to survive, this discovery opens up worlds of hope.
The e-Patient White Paper has several cases of people with uncommon conditions banding together to – for the first time ever – start working on a disease. GERD comes to mind, and I’m sure you’ll recall others. Chapter 3, I think.
But I’m not sure about your nomenclature for stages two and three, which suggest (intentionally?) that two comes first, prerequisite to three. When three happens (professionals fortifying the community’s collective knowledge), it certainly helps two (the community solving a problem), but neither requires the other, does it?
And what about savvy senior members of the community who for all practical purposes become couriers from professionals? I think of the patients in my ACOR group citing that “Dr. X at City of Hope in L.A. spoke recently about ____,” etc.
Or even beyond – remember e-Patient Judy Feder, who discovered a new marker that was being studied so wasn’t even in the literature? She learned about it because the fellow patients in her BCMets routinely go to the ends of the earth for new info: the system isn’t optimized to bring in the latest info, so they do it themselves.
So I think you’ve rightly declared one profound aspect – the transformation from “I’m alone” (existentially) to “OMG I’m not,” but I think the other issues – professionals contributing, and actual help materializing – reflect two separate measures of the community’s maturity. (Pros aren’t always helpful, in the community’s POV. I can’t point to examples but have heard too many stories of professionals showing up and attacking members who have unorthodox thoughts. Never helpful.)
Personally what I’ve longed for, ever since reading the White Paper, was for some anthropologist or sociologist to analyze how it is that gatherings of people – online or off – evolve after their first random connections into groups that sometimes are really sophisticated, helpful, useful, sharp-minded, while others remain random and thus not useful. Are there signal moments in such groups’ history? (e.g. ACOR’s kidney cancer group inherited Steve Dunn’s CancerGuide community, where he’d long been a wise and savvy leader.)
What are the parallels between such good groups in medicine and in other areas, such as the various car owner groups? (I’m always impressed at the useful information on PriusChat, for instance.) What can we learn from the evolution of those groups?
Dave, I’m beyond grateful for your thoughtful comments and questions. I’m traveling this week but will devote some plane time to pondering!
You raise thought provoking and important questions. What do patient do when “Their needs are not being met by mainstream health care”. Mainstream health care does not always help and does not always want to help. Incentives drive much of what happens in healthcare and incentives are very often not align with being “patient centered”. Take treatments. Pharma develops treatments for potentially lucrative markets. If you are not one of those, ah well then. But patients will not sit and wait while their life time clock is ticking.
They will start a patient registry and crowd source patient driven research. That is what we have done with MyLymeData. You might call this peer-to-peer research, stage 2. When you realize the cavalry isn’t coming, it’s time to roll up your sleeves and start seeking disruptive innovation to promote change. Capturing the data from 12,000 n-of-1 trials may be the most efficient way of making progress in a disease.
Stage 3 is delightful when you can find it. Many rare disease communities find they need to find and grow expertise that would otherwise never focus on their concerns without their fellowship and grant support. This is how research disadvantaged diseases run a railroad–first they lay down the rails.
Even in treatment, mainstream medicine sometimes is not interested in helping–think HIV/AIDS early days. Those LGBTQ users of the internet–they are looking outside mainstream medicine because they have suffered at the hands of mainstream medicine. Stigma is shaming behavior. It does not require obedience from the stigmatized. In Lyme disease our surveys show that stigma will cause patients to delay or avoid necessary care entirely.
Patients absolutely need to find the best information where ever they can find it–even if that means that they become patient PI’s on research projects that would never happen without them leaning in, even if it means they lean on each other for n-of-1 help in diagnosis and treatment decisions.
Lorraine, yes, I think what you’re doing fits squarely into Stage Two. One of the audiences I hope to reach when talking about this model are the organizations and people with resources & power who are currently blind to (or at least not seeing) the opportunities crowding that stage. I’m trying to get them to “see with new eyes” this varied landscape that you and I and others are building and mapping.*
Thank you also for the pointers to historic (and sadly still present) issues related to stigma. So much pain, so much to repair on that score.
* Reference: “The real voyage of discovery consists not in seeking new landscapes but in having new eyes.” ~ Marcel Proust.
Thank you, Susannah, for the kind reply. I love the quote!
Breaking the comment thread because we reached the Reply limit above.
E-patient Dave wrote: “I’ve long been puzzled (as I’m sure I’ve mentioned) that there’s a precursor issue that I wish sociologists would study:
What’s the process by which some nascent communities acquire a brain, a heart, a soul, an identity – and others don’t?”
If I were to investigate this, I’d start by looking at what Marc Smith has written. He is a sociologist who is cited by the guru Howard Rheingold in the introduction to The Virtual Community (1993):
“Social psychologists, sociologists, and historians have developed useful tools for asking questions about human group interaction. Different communities of interpretation, from anthropology to economics, have different criteria for studying whether a group of people is a community. In trying to apply traditional analysis of community behavior to the kinds of interactions emerging from the Net, I have adopted a schema proposed by Marc Smith, a graduate student in sociology at the University of California at Los Angeles, who has been doing his fieldwork in the WELL and the Net. Smith focuses on the concept of “collective goods.” Every cooperative group of people exists in the face of a competitive world because that group of people recognizes there is something valuable that they can gain only by banding together. Looking for a group’s collective goods is a way of looking for the elements that bind isolated individuals into a community.
The three kinds of collective goods that Smith proposes as the social glue that binds the WELL into something resembling a community are social network capital, knowledge capital, and communion. Social network capital is what happened when I found a ready-made community in Tokyo, even though I had never been there in the flesh. Knowledge capital is what I found in the WELL when I asked questions of the community as an online brain trust representing a highly varied accumulation of expertise. And communion is what we found in the Parenting conference, when Phil’s and Jay’s children were sick, and the rest of us used our words to support them.”
Note that this is just a starting point and does not directly answer your question. There are many social scientists working in online communities and I’d welcome more suggestions if people have them (including self-nominations if we’ve got some sociologists reading along!)
Two mind-poppers for me in that:
1. “whether a group of people is a community” – aha, that’s what I was missing in the skin cancer “community.” The one I saw was really just a bunch of passersby.
2. “Every cooperative group of people exists in the face of a competitive world because that group of people recognizes there is something valuable that they can gain only by banding together” – hm, *cooperative* group is an important modifier; and although what he says makes sense, I wonder if it’s an absolute that this only happens when there’s something valuable that’s available only by banding together. (It makes sense – just wondering if it’s absolute.)
What a great response, quite a gift, Susannah. Now I hunger for some anecdote moments, those moments where someone with a need gets it answered by someone else, and then it happens again, and then they help someone else.
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That was 27 years ago – I wonder what’s come of it since. Wonder where that Marc Smith is!
Click on Marc’s name above. I included a link to a page about his current work.