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?