Evidence is piling up in favor of peer health communities. The question is: How do we sustain them for the long-term?
Here are 3 studies (of many) about the benefits of peer-to-peer health advice:
A survey of the #bcsm community found that participation lowered people’s anxiety and increased their overall knowledge of breast cancer.
A survey of a diabetes peer group — CGM in the Cloud — found: “Respondents put a high level of trust in their peers versus health professionals in many health situations with nearly 40% of individuals reported to be helped by following advice found in the Facebook group, and 99% reported no harm.”
A full decade ago, PatientsLikeMe, a for-profit site now owned by UnitedHealth Group, conducted a survey of their epilepsy peer community and reported that:
“One in three epilepsy patients did not know a single other person with their condition. Patients with epilepsy reported the benefits of using an online community to find other patients like them. Benefits included gaining a better understanding of seizures and learning more about treatments. The more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.”
I could go on and on, listing study after study showing the benefits of peer-to-peer connection among people living with the same health conditions or challenges.
The benefits are great, but the burden on the moderators of these peer communities is heavy. They often serve without pay, responding to questions at all hours, and burnout is a significant danger.
How might we better support the moderators of these communities? Should they be paid? By whom?
When I asked Deanna Attai, MD, one of the moderators for the #bcsm hashtag community on Twitter, she replied:
For me, the #bcsm work certainly is on my own time, although I do have one administrative day per week to work on research and other projects. I do include my moderator activities on my personal statement for academic review, under the “creative and scholarly pursuits” section. I also include my research and publications related to my work with the #bcsm community. I doubt that anyone on the promotions committee has any idea about the impact of the community, but they understand publications and citations.
I think a huge part of the success of #bcsm and other communities is that they all started organically – patients recognized a problem and then stepped in to solve it. I’ve seen a few efforts on the part of pharmaceutical companies or other breast cancer-related companies to develop “patient communities” but even when they are not branded, they don’t seem to get as much attention, but maybe they’ve just moved on to other platforms.
If a hospital system or institution wanted to develop a patient support community I would recommend they set up the leaders and let them do their thing, independently. The institution should provide the infrastructure and support, but keeping things as unbranded and transparent as possible will make for a better patient experience, which should then reflect well on the institution.
More generally, institutions in general could encourage their clinicians to have a social media presence, providing training and education for those who are interested.
I would like to hear from more moderators of peer health communities, whether you are unpaid or paid, associated with any institution or independent. What do you need? What would make your work easier, safer, higher-impact (or however you want to define “better”)?
Disclosure: I am writing a book for MIT Press about the peer health revolution and this post is part of my process. Thanks for your help in thinking this through!
Image: Sandhill cranes taking flight at sunrise, at Platte River near Kearney, Nebraska, by Diana Robinson on Flickr.
Great post, Suzanne!
The moderators on Smart Patients are paid, sometimes with contributions from advocacy organizations but, more commonly, from the proceeds of projects that we do with our partners in healthcare to amplify the voices of patients and their caregivers.
I think if more people in healthcare were aware of the value of online communities, they would consider it a key component of a treatment plan and would pay for it.
Across our 100s of communities, the most frequent comment when people join is along the lines of “I am so glad to have found this community. I had no idea that communities like this exist. I thought I was all alone.”
— Kevin
Thank you! I bet Smart Patients supports moderators in other ways — can you share some of those ideas?
For example, do you provide a forum just for moderators to talk about issues they face? Do you encourage people to keep regular hours or limit the number of hours they work? Do you provide training about how to deal with misinformation, personal attacks, etc?
And I also bet your moderators have tools available to them to boost up certain posts & comments and delete/de-emphasize others. I would think that would be a huge benefit that is not available on other platforms, to other peer health community leaders.
Thanks, Susannah.
We typically moderate with a light touch. A small amount of effort is required to corral the members who want to talk politics rather than healthcare but most of our moderation is about helping people find the community that’s right for them or directing them to a conversation that is relevant to their situation.
We compare notes all the time and, after nearly ten years of working together, have almost achieved mind-meld and we discuss and improve our moderation tools constantly.
I like the idea of moderating with a light touch. Also, without paid moderators, I wonder if some groups would disappear?
Absolutely, peer moderators should be paid. Fill in ‘lawyers’ instead of peer moderators. They have choices to use retainers, hourly, or pro bono. It’s a choice. Build business models, grant applications, grant submissions, contracts to pay peer moderators.
I love that mind-shift! Do you know of anyone who has been successful in winning grants & contracts to pay peer moderators?
19 years ago, at my first staff meeting during my PhD, my professor said that an online forum community (BUILD-UK) run by a nurse for her research project was going to be shut down, unless anyone would be willing to take it on. A do-gooder nerd who hadn’t yet learned never to volunteer for anything, I said I’d do it. When I logged into the PhPBB site there were just two patients with ALS/MND still active on the site, both young people in their 20’s diagnosed with this awful disease. Most days, nights, and weekends I logged into that site and answered questions, debated topics, moderated flame wars, cleaned up spam, and was a lightning rod for some to rail against, all unpaid and in my “spare” time, but still within the context of a learning environment as I was doing my PhD (and it turned out to be the most educational part). I got told off a little bit by the original researchers who wanted to study the patient conversations as they developed organically, but if someone asked a question I could find the answer to I just couldn’t help myself. I managed that for about 5-6 years before full time work at PatientsLikeMe (being paid!) took over and I turned my attention to setting policies and procedures that would make moderation more scalable across 20 communities before our team grew and other people more expert than me took on the challenge of moderation. Since then I’ve seen other ways to run forums, like HealthUnlocked who train moderators at non-profits and so only need 1-2 full time staff but have trained hundreds of paid and unpaid volunteers to moderate their forums.
A few reflections:
1.) It’s a rewarding, stimulating, obsession-causing honor and privelege
2.) If you do it for too long it’ll be to the detriment of other parts of your life
3.) To quote ER, “You set the tone” – some moderators live out their own little Stanford Prison Experiment
4.) Its an undervalued and underappreciated skillset, even those who are paid are probably underpaid
5.) You’re not just there for the active participants but for the 99:1 ratio of lurkers
6.) Trolls can break you – they probably have more time on their hands than you do and they’re energy vampires
7.) With the right archiving and search, you are creating a semi-permanent library of Alexandria of how to solve various problems – I myself ended up finding that my own forum’s answers from 10 years ago about the best toilets for people with ALS/MND remained the best answers on the Internet even today
8.) People can and will meet up in the real world and that’s going to lead to hugs, political change, tears, marriages, babies, fights, and sometimes all of the above
9.) You can feel sadder at the death of a person you never met than you’d think (I just found out yesterday one of those two initial forum participants died this year, and it’s hit me)
10.) No-one wants to eat in an empty restaurant
What a wonderful list! Number 2) certainly hits home and your comment on setting the tone is bang on.
We’ve never had a problem with trolls. We get a lot of folks pitching their wares but they usually give themselves away on their first post and we delete posts that are pure marketing for a product with no attempt to engage with the community.
A more common problem is well-meaning people who want to tell the world their miracle cure for cancer or, more recently, COVID. We’ve found that allowing such posts to stand and encouraging other members to politely but persistently debunk them is more effective than simply deleting the posts. As you say, the lurkers are important. For every person who knows a miracle cure for cancer, there are a hundred people lurking who might’ve heard the same claim and are open to persuasion. Allowing bogus claims to stand and be challenged is important. You can rarely change the mind of the claimant but all those lurking minds are listening too.
Agree! Great list. And I can picture you as an eager “just one more” question-answerer, staying up way too late at night.
Maybe it’s a literary reference that’s flying over my head, but who is “ER”?
I have two references for you.
Reference 1 in relation to staying up late at night: https://xkcd.com/386/
Reference 2 in relation to ER:
https://www.youtube.com/watch?v=-oJHa2KUx8w
Oh my, I failed at the 1990s TV trivia game today, didn’t I? Thanks for the nostalgia hit.
I struggle with this a bit. Pay introduces a power differential that changes the valuable nature of the conversations that happen in these communities. With that said, the investment that many make to these groups in terms of time, emotions, cognitive burden can be fairly substantial and certainly comes at a cost. The people that are sharing in these groups provide a wealth of information to others in their disease communities that is unparalleled. At the same time, misinformation can take on a life of its own with fiction quickly becoming fact, and it seems that endorsement or up-votes is what holds the most clout. The people going to these groups are desperate to find a shared humanity in their peers, something they haven’t been able to find in other places. They’re looking for something clinics and care teams aren’t providing. So when someone is getting paid to moderate, several questions come to mind – who is doing the paying? who is getting paid? how were they chosen? and whose views are being shared/represented? I’ve seen and in fact been a part of this experiment with pharmaceutical companies hiring patient experts to write or engage with other patients. Motive is questioned as is quality of the information provided. I didn’t feel there was anything unethical being done, but I do respect the concern as we have seen this incentivizing to send a certain message happen before ( ie the opioid crisis).
I think there has to be a way to integrate peer support as a standard of care because theres no question about the value it provides. What if we had patient leaders integrated into care teams who were paid for this kind of support? I had the opportunity to work as a family partner on a cystic fibrosis care team several years ago and while it didn’t quite work out the way that I had hoped it would, here was the vision:
Similar to how a CF care team is comprised of a team of clinician experts (pulmonologist, respiratory therapist, dietician, etc), we would add a patient to this team, or team of patients who supported the clinic as paid members of the care team, offering the kind of support and connection to peer groups and real-life practical information often shared in such groups. Working in partnership with the care team would provide the multi-disciplinary approach to different topics and challenges. Just as a respiratory therapist wouldn’t take the place of a dietician but perhaps share information and consult with to get a well rounded perspective on it, the team of patients could discuss issues that arise with the greater care team to both raise awareness and come to shared and supported answers. I think this is an opportunity to bridge an often divided patient and clinician community as well. We might not always agree or align on what is being recommended, but if we truly want to coproduce care giving everyone the best chance at a good health outcome, we need to embrace new ways of working together that use the valuable resources that already exist, like patient communities.
As a sidebar, the reason it didn’t work 10yrs ago when I tried it was for several reason, in my opinion. The data that supported this type of peer to peer learning and mentorship was just not widely enough known. Change is hard and takes time, and it felt abrasive to have a new and novel perspective (mine) as a part of an already established team. After all, I was still quite new to this disease community, and most of them had worked with people with CF for years and years. We didn’t co-create how we would work together – I weaseled my way in and tried desperately to forge ahead with what I felt was needed rather than consider how we might walk together into this new way of working. I saw the opportunity and desperate need for a new kind of connection as a member of these peer support groups, but overlooked the fact that the care team didn’t have this view. We never took the time to build the trust necessary to sustain these types of relationships, and the approach I took eroded trust rather than built it. There was a tremendous amount of learning that took place all around, and I have no doubt that we would be able to create this model today in a way that was productive and beneficial for all parties involved.
Thank you, Erin!
There’s so much to unpack in your comment.
I’ll start here: “The data that supported this type of peer to peer learning and mentorship was just not widely enough known.”
When I started collecting studies — years ago! — in anticipation of writing the book I’m (finally) working on, I was shocked to find how deep and wide the well of evidence is in favor of peer-to-peer health care. I devoted a whole chapter to the history of the movement and could write a whole different book about it.
But journal articles don’t get the job done. We need translation. We need mandates (as in: we won’t give you a grant if you do not have a peer support arm of this study). We need people to feel the power shift and realize that it is OK to make the conference room table (or the Zoom screen) bigger to include an expert patient or caregiver on the care team.
By the way, if anyone reading this has their own peer health literature review and wants to share it with me, please send me a note: SusannahRFox at gmail dot com. Mine is like a magpie’s nest so I hesitate to offer to share it in return!
I have so many thoughts prompted by Erin Moore’s note here, but the most pressing on my mind is just: despite the measured tone, every sentence here is potentially explosive (in a good way). I’ve read it twice and I recommend others do the same. Just to pick a few:
“…who is doing the paying? who is getting paid? how were they chosen? and whose views are being shared/represented?”
Managing these issues requires so much expertise and commitment. We struggle with them after 13 years and I don’t think have very easily replicated answers. We do a lot of talking, talking and more talking; building trust among people who are most committed and doing the most time intensive work—and yet, lack of clarity and concern for not hurting the organic life of the community we’ve built is a huge constraint. We literally ignore and walk away from opportunities because they seem too complex and we’re not sure how to handle the money and control issues. Not ideal! This is an unsolved problem, and a big one.
Also: “What if we had patient leaders integrated into care teams who were paid for this kind of support? I had the opportunity to work as a family partner on a cystic fibrosis care team several years ago and while it didn’t quite work out the way that I had hoped”
I think this is so important to underline as a vision that _should_ be realized, and also to be clear, as the following paragraphs were, about what goes wrong. However much weight we give to the issue of published evidence, I think this account shows that there is a big mismatch between the expectations and epistemic practices of biomedicine and the research and care needs of patients. Having been part of so many circular and unproductive discussions about self-tracking and self-research with people whose focus is on academic/clinical research, my 2¢ is that the demand for “more evidence” may not be worth spending very much time on. This always seems to result in people being paid to *study* patient communities and peer knowledge, while the people creating and supporting peer communities remain unpaid.
Wonderful post.
This month, Christina and I will celebrate our 8th anniversary as co-moderators of the #gyncsm chat and community on Twitter. We as well as our health care moderators, Three gynecologic oncologists are unpaid. Christina and I share responsibilities related to the chat and answering questions which helps with being able to continue for so many years. We have also cut back on a few chats and have collaborated with other chats on topics common to all cancers to allow us to take a break for a short time.
We are not affiliated with any national organization or pharmaceutical company, so patients and caregiver know that we are not slanting the information toward any particular product or service or not sharing information because of an affiliation with other groups.
If a grant for our services was available where we had the freedom to present topics as we feel most benefits those impacted by gyn cancers I would consider and appreciate that.
We have had only a handful people sharing misinformation over the years and will counter that with information from reliable resources.
Thanks, Dee! Sharing the responsibilities with a team and setting boundaries (ie, limiting the number of chats) are two sage pieces of advice.
For me, the question of payment is a red herring.
Underlying this question is that of fairness, digital rights, and institutional legitimacy for online patient communities. The way I like to think about fairness is with a few guiding principles:
1 – Are all members’ contributions in a peer support community valued and respected in fair ways?
2 – Are the costs (time, training, cognitive / emotional burden, and necessary resources) needed to run a community properly supported?
3 – What are potential harms that may happen for communities without good moderation? Is there value in protecting from those harms?
4 – How do stakeholders outside a support group or community (be it industry, healthcare, researchers, etc) benefit from the existence of the community as a shared resource?
5 – How are interests of the patient community aligned or misaligned with those who benefit this shared resource – be it data, networks, ideas, etc?
6 – How are the interests of the patient community protected fairly and sustainably?
Taking payment out of the question, we might quantify each of these 6 things more tangibly to understand the value that peer support group moderators bring to communities, and ask how we might support that value.
Lots more to say on this topic but not more time. For now here’s what we said on this in 2019 when forming The Light Collective: https://lightcollective.org/quality-moderation/
Thank you, Andrea! I’ll admit it, I did put that question in the title of the post to be provocative. And I appreciate your sharing that list of how to even start to understand the value of patient-led communities.
Everyone, when you have a chance, click through on the link Andrea included in her comment. Or click through on this PDF link:
Peer Support: Moderation Best Practices
It is 15 pages of wise advice, questions, and conclusions about dedicated peer support forums. Facebook is the primary platform addressed, but I think the practices outlined are applicable to other member-based communities (as opposed to open platforms like Twitter — hashtag communities can’t control who reads or contributes).
We are living through a transitional moment, when the benefits of peer support are clear, but not everyone knows about them and few people understand the wide spectrum of platforms available and the work involved in setting up & maintaining the communities.
I wrote this post to get input on the “how to support moderators” question but the challenge, of course, is much broader than that, as the discussion so far shows.
If anyone knows (or wants to take a crack at) a taxonomy of peer support platforms, please let me know!
Susannah –
Thanks for the link to the best practices paper. When I became a Cancer Hope Network Peer Support person I went through a day of training. I am sure that training has helped me help others in the #gyncsm community.
Katz , Thompson, Anderson et al looked at cancer tag ontology in Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities -https://susannahfox.com/2021/09/02/should-peer-health-community-moderators-get-paid/?replytocom=226787#respond
A start of Patient lead Twitter Communities
#BCSM-breast cancer social media
#BTSM-brain cancer social media
#ayacsm- adolescent & young adult cancer social media
#gyncsm-gynecologic cancer social media
#lcsm-lung cancer social media
#mmsm-multiple myeloma social media
#panscm-pancreatic cancer social media
Were you looking to put together a list of other patient support platforms – organizations, Facebook, Inspire, Smart Patients etc ? Cancer only?
Thanks, Dee!
I’m not sure it would be possible to create a comprehensive catalog of patient support platforms at this point. There are too many!
By “taxonomy” I was thinking about a broader categorization of types of peer health communities.
For example, here are 3 very broad membership types:
1) Open to all (like a hashtag on Twitter)
2) Open to some (like Facebook pages that someone can follow or Inspire/Smart Patients/Health Union groups with low membership requirements, but a person does need to have an account on that platform)
3) Closed (groups with strict membership requirements)
And here are some categorizations for the groups’ primary purpose:
1) Emotional support
2) Troubleshooting problems with existing devices, treatments, techniques
3) Innovation and invention of new devices, treatments, techniques
4) Data collection
5) Political organization
There are groups that encompass all five of these, of course, so the taxonomy would need to be flexible enough to handle that.
What other categories would be useful to include? And what kind of support do moderators/leaders of the different kinds of communities need?
I raised this topic for discussion on Smart Patients and there were some new thoughts that had not previously occurred to me.
One member was adamantly against having medical professionals involved because they would surely restrict what people were allowed to talk about and lawyers would inevitably get involved with determining the rules.
Also, members often express the fact that they would not want doctors to have access to the community because the conversation stops when a doctor speaks. Most prefer that it is purely peer-to-peer.
Kevin Lawrence, interesting comment, similar to what we also found. We asked to 17 superusers in an asthma online community: “Do you think health professionals should direct patients with long term conditions to online health communities?” The results are described here https://www.jmir.org/2020/6/e18185/
9 out of 17 participants replied positively, 5 were unsure, 2 were against it, and 1 did not answer the question.
Difficulties making participants unsure about healthcare professionals’ participation were potential scrutiny of all posts, limitation of expression from different points of view, and the problem of not knowing the clinical details of users well enough before an appropriate answer could be given:
“I feel the community is for those who don’t otherwise have a voice and that it would seem too “preachy” to have a medic commenting on every post.”
“ …it might get difficult (difficult/awkward for medics when dealing with people they know little about)”.
Issues with HCPs’ code of conduct and difficulties with HCPs being patients themselves were also expressed:
“ Difficult. There is a place for it but I think it blurs the lines a little and their code of conduct with their registering body…I think as a healthcare professional who is also a patient they need to be aware of the blurred line between patient and healthcare worker.”
The reasons behind perceiving HCPs’ participation beneficial were the opportunity to get worries and questions addressed. However, as this respondent notes, their participation may be mutually beneficial through learning more about the patient experience of their illness:
“Not only could a lot of peoples’ worries and questions be easily answered authoritatively healthcare professionals could gain much knowledge from forums.”
There was a mention of engagement in OHCs as an additional remunerated duty for HCPs:
“I think they [HCPs] should be paid to set aside time to monitor forums.”
Most participants felt that HCPs’ participation in OHCs was important as long as their identity was stated:
“They should include their medical specialisms in their profiles and understand that there are many viewpoints on some issues.”
I would tend to see this reluctance to include doctors as a sign that patients feel disrespected by the medical profession, and thus value the opportunity to converse among themselves without being judged or directed by doctors.
I have seen similar concerns voiced by groups that advocate for women’s rights (about the tendency of men to take over a discussion due to their position in the de facto hierarchy of gender) and in groups that advocate for people of color (about the tendency of white supporters to dominate because that’s what white people*do*).
I understand all of these concerns, and while I would not personally want to exclude physicians from participation (some of the most interesting comments on Smart Patients have been from doctors, and their decision to participate in a patient forum tends to identify those doctors as being more open to the ideas and concerns of patients), I would certainly not want to give them special status as moderators or presenters, as this might reproduce the doctor/patient hierarchy from which a patient site would otherwise provide a refuge.
Thanks Susannah, great post!
We did explore the topic with 17 superusers in an asthma online community of 18,000 users. The results are described here https://www.jmir.org/2020/6/e18185/ and are mirrored in the fascinating replies you had already to your post.
Superusers were both patients and carers of a wide age range, tended to take part in more than one online community, and indeed spent considerable time in a role similar to that of moderators, spending up to 20 hours per week reading and up to 3 hours per week writing posts.
We asked them specifically “Do you think your work as superuser could be recognised in any way (socially or financially) considering it might help other patients managing their illness better?” (question n. 16 of this SurveyMonkey https://www.surveymonkey.co.uk/r/CP7JQ7L )
13 superusers replied negatively, 3 were unsure, and only 1 replied positively (quote reported below).
The main reason behind the ‘no’ answer was that reward should come from the awareness of helping others and the fact that social interaction is actually enjoyable.
The motivation to ensure that all users felt equally important to the whole community also played a role.
Other factors against social and financial recognition were the voluntary nature of contributions and the potential misuse of financial incentives.
Some positively saw the social recognition as sensible/knowledgeable users: “Those who are particularly helpful could be recognized with titles, so users know who to contact for issues. Monetary incentives could also be considered, but most people who help online are doing it just to be helpful rather than for any other purposes”.
What was revealing was the interpretation of our findings through the lens of Self-Determination Theory (adapted from Ryan and Deci’s theory): Superusers displayed high intrinsic motivation to engage with online health communities (OHCs). According to the theory, intrinsically motivated behaviors are carried out for the sake of sheer interest or satisfaction derived from the task. Intrinsic motivation constitutes the most autonomous form of motivation and was highly evident in the superusers of our study. Through OHCs’ engagement, they exhibited fulfillment of the 3 basic psychosocial needs: relatedness, competence, and autonomy. With respect to relatedness, superusers described a sense of belonging to the community and a feeling that they mattered to other users. Participants also expressed a sense of mastery (competence), believing in the effectiveness of their ongoing interactions with users within the OHCs. Their behavior was self-endorsed, reflecting autonomy. Superusers were autonomous and wholeheartedly behind their engagement with OHCs. With such strong intrinsic motivation, extrinsic motivation, that is, behaviors that are carried out to obtain outcomes unrelated to the activity itself, such as financial rewards, unsurprisingly, was not particularly relevant. Nevertheless, moral pressure to monitor OHCs, answer to requests of help, rectify any inappropriate advice, or address users not seeking medical help when appropriate were extrinsic motivation factors that at times felt difficult and stressful, needing to be internalized and integrated in their role of superusers. Hence, to help with these challenges superusers suggested improved rules for safe engagement with OHCs by the hosting platform, and encouragement of an initial passive engagement phase when new members join an OHC.
Thank you, Anna, for sharing this research. Your work on superusers is enlightening!
Thanks once again, Susannah, for a piece that makes us think.
Dad always said that it’s important to know who butters someone’s bread, and if a volunteer support relationship turns into to a paid position, I think that it is of utmost importance to have that fact disclosed clearly.
In the ALS world, we often see the grassroots peer support networks being far more productive than some support supplied by paid staff members of some ALS organizations. The secret sauce of a peer support network is, indeed, its grassroots nature.
Even more important than compensation to me is knowing how to make some boundaries around the volunteer roles and still serve each other well. That part is hard. The images of the water pouring into subway stations this week reminded me of the nature of the amount of support that people dealing with ALS need. The disease is relentless, it’s 24/7, and you never know when urgent needs will come flooding in.
How do we all pitch in to shield leaders from carrying relentless 24/7 demands?
I think that if we looked at succession planning in these communities the way we do in a business that it would be helpful. That can sound dreadful in a community facing a fatal disease, but knowing the plan for passing batons and developing understudies would help a lot in my opinion.
Thanks. I look forward to reading more discussion on this topic.
Grateful for this wise comment — and will share this question on Twitter, since it captures what I hoped to ask: “How do we all pitch in to shield leaders from carrying relentless 24/7 demands?”
Here’s an upcoming workshop that discusses future directions for online communities: CSCW 2021 Workshop on the Future of Research on Online Health Communities: Discussing Membership, Structure, and Support.
Information on submitting to this workshop:
https://alexpapster.wixsite.com/futureofohcs/submitting
More information at:
https://alexpapster.wixsite.com/futureofohcs