“You are not alone.”
People who are newly diagnosed or facing a health challenge long to hear those words. Connection is an antidote to suffering and confusion. When they are able to tap into peer-to-peer networks of patients and caregivers, Networkers learn in community about their condition, shrug off the burdens of isolation and shame, then urge each other to stand up for themselves. Networkers pick up signals and, if we tune in and listen, they can serve as an early-warning system for crises – and solutions.
Networkers pool resources.
This is the second post in a series that I’m writing to introduce the archetypes of the patient-led revolution (for my forthcoming book from MIT Press). The first post focused on Seekers. Today: Networkers.
I’ve interviewed hundreds of people, but I’m always looking to learn more and figured I’d post my notes to get input from my community (thanks again for being here!)
Here’s some advice shared by Networkers when I asked what they’d say to people who were just starting out and not yet connected with peers:
You may feel hesitant about joining a community. Maybe you’ve sworn off Facebook, Twitter, and other social platforms. That’s OK. Podcasts are a great way to dip into a topic and start to pick up terminology, as are YouTube videos. Listening and learning from others like you can make you feel like you are part of a larger community.
Start small. Find one person who has been on the same path that you are on. Learn from them about the communities they have joined.
Some of the most valuable health insights comes from anecdotes: What does a heart attack, childbirth, or dialysis really feel like? How do you take a shower with a leg cast? Most people understand that these stories are personal and not medical advice. A responsible Networker weeds out bad advice and misinformation before passing anything along to others. Start honing your fact-checking skills. When you do see bogus advice being shared, debunk it.
Once an innovation proves useful, Networkers can help make sure that everyone who could benefit is able to understand it, get it, and, if necessary, keep at it. Networkers can say to people who share their condition or life stage, “This works! I use it myself.” Write a review for a product or service you love so that other people benefit from your experience.
Now, your turn. If you are a Networker, please share some tips for people who are wondering if it is worth investing the time to become part of a community. How did you get started? What drew you to your favorite group — and what keeps you there? What advice do you have for fellow Networkers?
(And yes, I intend to use these comments in my book or further articles about peer health innovation, so thank you in advance for your help!)
Image: Screenshot from the Peer Health Advice video I produced with Reframe Health.
Jane Buescher says
The great thing about communities and tools like this is their ability to cater to different types of people and different types of needs. That means that the quiet observer, the person looking for concrete recommendations, and the active contributor can all find what they need in the same community. I’ve found this to be true in strong large group communities and in meaningful 1:1 tools or services.
Susannah Fox says
Thanks, Jane! I agree — once someone finds a group, they can participate at their own pace. I worry about the people who don’t have any idea how to find a good patient- or caregiver-led peer group. Or how to figure out which one to join, if there are multiple. I’d love to hear any advice you have for those cases.
Jane Buescher says
Great questions Susannah. I have found with some of the groups on Facebook or elsewhere that a good starting point is to search by topic and then you can actually view details about the group such as how many members there are and how many average weekly posts there are to make sure it is an active group. It can also help to add some context to the topic when you search – “parenting + cancer” or “newly diagnosed with MS” to increase the chances of a good fit (more of a whole person strategy). Mental Health America has a vetted list of peer-based resources as well as a starting point for those who want to keep off social media sites (*disclaimer my company Toucan has a listing on MHA).
kathy kastner says
My heart soared when my (sadly retired now) Family doc said, “if you have any good patient-to-patient resources, I’ll put them up in my waiting room”. [Can you imagine if that were standard]. One that I suggested – Mayo’s ab fab patient forum – headed up as you know by (IMHO) the Queen of Online Communities, Colleen Young. But to your point about where/how to raise awareness for newbies: would disease association websites be a logical place to open that door?
Susannah Fox says
Thanks, Kathy! Yes, I have learned so much from Colleen and the Mayo communities. And yes, I like the idea of disease association websites listing patient- and caregiver-led communities.
In other countries I’ve found examples of clinicians working with community leaders to find useful local resources — the NHS funds “link workers” to stock the virtual shelves with peer groups and in Colombia, the Keralty Foundation works with “community connecters” to ferret out, for example, salsa dancing clubs in the park to get people moving in a healthy, fun way.
Mighty Casey says
Finding “that one person” who becomes your gateway drug to peer community resources – for me, that was Alicia Staley, co-founder of #BCSM, one of the biggest social networks for patient resources around, who I met while I was in chemo phase of my first go-round with the breast cancer troll – is usually the key.
Given that I’m a journalist, and have a lifelong habit of fact-checking (which was enormously annoying to my parents when I was growing up, but they also taught me lots about e-patient-ing, which I’ve talked about for years: https://cancerforchristmas.com/how-did-i-get-here/), and an inveterate dot-connector, I found it pretty easy to discover resources through #BCSM, and other e-patient communities I’ve traveled with over the years.
It comes down to finding that one – person, group, program – that makes you feel heard, seen, welcomed.
And *always* go with the evidence-based, scientifically sound resource recommendations!
Susannah Fox says
Thanks, Casey! Great advice.
Kevin Lawrence says
I suddenly have very strong opinions about this, Susannah. I’ve been running the Smart Patients website for about ten years and I have just been diagnosed with a brain tumour.
Smart Patients has fantastic communities for many of the big name cancers but our brain tumour community is quite small so I went in search of a more substantial community on the interwebs. I started with a Facebook forum managed by a British brain tumour charity. The conversations are so shallow that I want to pull out my hair.
“I have brain tumour and I have a pain behind my eye. Does anyone else have a pain behind their eye?”
“Yes, I have a pain behind my eye too!”
“ **hugs** ”
I felt more alone than I did when I started.
But I did meet one person who is my soul-mate. We could be the same person if I were a young woman living in a different country. We are both interested in learning everything we can about the science of our disease and we help each other research treatments. No one else in that community seems interested in asking questions deeper than “What did your neurosurgeon tell you to do?”
To be fair, we have some shallow communities on Smart Patients too but, in our best communities, it seems as though everyone is like my Facebook soul-mate, willing to share histories and hopes, setbacks and triumphs and dreams of the future. I echo Susannah’s advice to track down the community that is right for you.
I’ve found the brain tumour community on Twitter (#btsm) to be inspirational but the TweetChats are at 1am on Sunday which isn’t great for me. I’ve met some wonderful people — both patients and glioma researchers — who are more than willing to help me think through my options in DMs. One lovely young woman in Canada had an almost identical diagnosis to mine and she talked me through every detail of her long and inspiring tumour adventure over several zoom calls. I am still deciding what path my future will take but she is helping to light the path.
As for misinformation online, Smart Patients has a policy of correcting rather than deleting misinformation. If it’s outright snake oil, fear-mongering or selling something, we delete it but if it’s someone who has a misunderstanding, we let more experienced members correct it on the grounds that, for everyone who post some crazy fact about their cancer, there are another 50 who believe the same crazy fact but never thought to ask about it. This was a huge problem for us during Peak Covid and we had to use all our moderation tools to prevent the conspiracies and myths from spiralling out of control but we made it through OK.
We have found that, while there are a lot of cancer newbies who have some strange beliefs about their cancer or about treatment, they can almost always be steered back onto the right track. But a handful of conspiracy nuts can bring a community to the brink of civil war. They have to be asked to move on. In 10 years of Smart Patients, we have evicted maybe 20 members and about 15 of them were during COVID.
I have found that blogs by experienced patients have been the best source of information. Bloggers put a little more effort into writing clearly and providing references that you can follow up on. Patient bloggers have given me far more information than any doctor. Doctor blogs can be good but they often green-shift their message and speak in generalities to the point where the information is neither useful nor specific. Patient bloggers are more willing to tell it like it is (though their situation may be different from yours) and they almost always write back if you contact them.
A shameless plug: I am trying to build up our brain tumour community for selfish reasons. If you know someone who has a brain tumour and is looking to meet people who are interested in the science and the research of brain tumors (and emotional support! Duh!) please send them my way: smartpatients.com/brain-tumor On Smart Patients, communities are not segregated by disease type so we have experienced members who are able to help with cross-disease issues like caregiving and legal stuff (we have an amazing book club for The End for Life Handbook going on at the moment) but it would be nice to have a few more brain tumour patients to share stories with.
If I can help with any details, Susannah, please feel to reach out.
PS. Having been to this rodeo before, I knew how hard most people find it to talk to someone about cancer. I find it empowering to talk to people about my cancer and most people seem to appreciate the opportunity to learn. So I wrote a little blog post to encourage people to talk more. https://www.raggedclown.com/2022/03/31/talking-philosophically-about-cancer/
It was also my opportunity to step out of the cancer closet.
Susannah Fox says
Kevin, I’m at a loss for words at the depth of the insights and poignancy you shared here.
Let’s begin with: Thank you. And: I’m sorry about your diagnosis. And back to: Thank you. For all the work you’ve done for the Smart Patients communities and for future patients & caregivers & clinicians, who will benefit from that work.
My hope is that my book will help shine a light on the path that you have helped forge. I’ll do my best.
Mighty Casey says
Wow, Kevin, you’re juggling a lot! Glad you’ve found some resources/connections, would definitely say that #btsm is a good source of people to reach out to. Tweetchats can be great *if* you can make it to them. It takes a village to help someone epatient their way through a diagnosis and treatment. If you haven’t come across Charlie Blotner, his Twitter handle = @CBlotner_
Best wishes for recovery, man.
Kevin Lawrence says
Thank you, Casey! I know Charlie second-hand, through Gilles but we’ve never connected. I’ll reach out!