During my illness, my patient community at ACOR.org (now SmartPatients.com) played an important role, but it’s not easy to find a good community for most diseases. (For instance, the most common cancer in the world is skin cancer, and I haven’t found a single smart, active community for its patients.) So several years ago I started a Patient Communities page on this site, to collect whatever information we can find. Maybe someday we can get some funding or a volunteer team to organize it better, but for now (as patients always do) we’ll make do with what we have!
Last week in Vermont, at the VITL health IT conference, after a workshop session, audience member Damon Lease said he’s found several different communities for prostate cancer, and found that each has its own personality. In my view that’s no surprise – people are different, and there’s no standardized way for communities to form and grow. Consider the diverse nature of the groups Damon found, on this one disease. From his email:
I like this one a lot – smart people, open to various treatment paths, they try to be helpful to the newly diagnosed, without being preachy. There are lots of people with advanced disease, and lots with less advanced.
There are a couple of people who’ve tended to be a bit outspoken in their point of view, but that comes and goes. It’s the nature of communities.
Lots of support for newly diagnosed people here – very welcoming and compassionate. But, there is a huge pro-surgery bias, even in cases where it doesn’t seem to make sense at all.
Inspire.com (which has forums on many cancers – Dave)
Lots of people here are focused on less mainstream treatments, to the point that many seem open to witchcraft and snake oil.
Of the three, at least for a guy willing to dig hard and really understand the science, the first is the most useful. But, on all 3, you really need to look objectively at what is being said and follow the links to the research.
I go to a support group in Burlington, VT, and I’m shocked at times how uneducated the patients are and they’ve just simply accepted what a single doctor said. They didn’t get second opinions on their biopsy slides, they didn’t see multiple surgeons and radiologists and most never see a medical oncologist.
There is a great conversation going on at Healing Well right now. There is an argument to be made for prostate cancer that most patients who can be cured never needed any treatment at all (I may be in there – at the very bottom of intermediate risk and a current statistical chance of 96% being disease free at 10 years), and that most who need treatment probably can’t be cured. So, the less serious cases are over-treated and the more serious cases are often undertreated.
Damon gets top marks for being a thinking, engaged patient! Notice:
- He’s responsible for himself and his case: does not expect anyone else to know everything
- Finds out about alternatives.
- Does not assume that anything he reads on the internet (or anywhere) is necessarily right.
Note, too, the points made by various groups (and by Damon), including that sometimes a single voice can dominate a community, not reflecting most members’ views, and, that there’s a valid option to not get any treatment (often known as “watchful waiting”). I myself have asked docs “If I do nothing, what happens?” In my view, the ideal clinician is happy to explain (briefly) how damage or death will ensue. (You have a right to understand why treatment is recommended, right??)
Can we study and understand how patient groups work?
I’ve also said that I wish some sociologists would come study the dynamic by which any community, online or off, grows … why do some random gatherings of people grow into a community, and others don’t? Why do some communities like “witchcraft and snake oil” while others (like my ACOR group) stomp on unscientific things?
Hi Dave,
Great stuff! I know of a sociologist who has published on patient forums. And a health communication scholar (myself), who has published on relational and informational patient-patient communication. Would love to share, just not sure about best place?
Thanks for all you do for (e-)patients!
Best,
Matilde
Matilde, that’s great – let’s connect! See my contact page.
Thanks, Dave.
I have now added you on Linkedin (and already following you on Twitter; however, I am still a Twitter newbie :).
Here is a link to our article entitled
“The Interpersonal Dimension of Online Patient Forums: How Patients Manage Informational and Relational Aspects in Response to Posted Questions” if you are interested:
http://download2.hermes.asb.dk/archive/download/Hermes-51-3-fage-butler&nisbeth%20jensen.pdf
Best,
Matilde
Years ago I was refused admission to an online chondrosarcoma patient group because I wouldn’t give the moderator my home phone number. She said she needed it in case I stopped participating (I assume that was a euphemism for “died”.) I’ve always wondered whether that group might have been helpful. It was certainly the only one out there.
I heard about this kind of policy long ago, to, but I don’t recall if it was a patient community. I wonder if anyone is still doing that in this day and age.
Thanks for these pointers, and for giving a shout out to Damon. I’ve been posting with disturbingly increasing frequency about prostate cancer and my own experience at http://www.techcurmudgeon.com. It’s not primarily a health or cancer-oriented site, but as I said, that seems to occupy my thoughts and posts more and more.
Hi, Peter. (Folks, Peter and I crossed paths professionally a couple of times in the graphic arts, collaborating in 2000 on a paper on an XML-based print language. It’s geeky! And what a time trip, to revisit that era.)
Peter, everyone I know in good patient communities about potentially fatal diseases is familiar with the reality that confronts you: uncertainty. I’m no expert in it, but I do know it first hand: in the first couple of years after my case, I knew the odds were 50% that the cancer would come back and I’d probably die. There was nothing I could do but be damn glad I was alive – I hugged my wife a lot, spent plenty of time doing “time off” things I’d wanted. I found a new hobby (blogging about medicine!) and loved being alive.
Personally, I got lots of value during the uncertainty from not just talking about it, but from connecting to others who’ve been through the same situation. When you think you might be dying unpredictably soon, there’s a lot to be said for talking with people who were in the same boat twenty years ago!
Mind you, I’m talking about how to deal with your concerns – not at all saying you shouldn’t have those concerns. The very first thing I was taught (by my sister Suede) about mortal concerns is that everyone deals with them differently, there’s no wrong way, and the last thing you want to do is put energy into thinking “I shouldn’t feel this way! Stop that!”
Thanks, Dave. I have not yet figured out how to connect with other people in this plight. I know there are support groups around, but I have not really reached out to any of them. Partly I think it’s a matter of time. Between radiation treatments and the full-time day job, I don’t really feel like going to meetings in the evening. I finally convinced myself that I don’t have to finish my certificate at Tufts this semester, and that was a huge relief.
Understood, Peter … fwiw, I wasn’t talking about in-person groups, I was talking about online. 24/7 whenever you want, no face to face if you don’t want it.
Best wishes! We should have lunch.
Thanks, Dave. I’ll have to check out the links in the original post for online forums.
Lunch? Definitely!
I have to speak up for Inspire.com. My experience is that this site provides a learning and communication vehicle like no other, at least for my rare cancer. There are 800 participants in my group and I’ve learned more about treatments, what’s working and what’s not, side effect and surgery options than anywhere else on the Web. I also get an interesting international perspective because some treatments are not yet available here in the USA. Yes, there are some small percentage of people that are trying alternative treatments who post excitedly, but there’s something to be learned there as well.
Hi Dave! Your reply points out an essential thing for everyone to realize: each community is a product of its people, not (usually) the “brand name” on the site. On Inspire or on the site I used (ACOR), the communities for some diseases were superb (like mine for kidney cancer), but for others there was little or no activity.
This really is essential: a community’s worth is a function of several ingredients: its people, the ongoing network of conversations that they have (which to some extent tend to be self-perpetuating, good or bad), and – I suspect – a decisive factor can be the presence of a good moderator.
It will be a great exercise for us to collect stories to draft a profile of what makes for a “good moderator.”
One great mystery is why there’s no good community ANYWHERE for skin cancer, the most common cancer in the world. You’d think there would be one, since it’s also a cancer that often recurs (I’ve had 4) – so you’d think patients would have an interest in sharing experiences at how to cope with it, treatment options, and what works for prevention!
How to grow a great community is a terrific mystery for us to pursue! Your list of what YOU’VE learned is a good start on what we find in a good community.