So, what is an E-patient?
In the last four years, I’ve interacted with at least six e-patients around their advocacy efforts in mental health. I’m come to conclude that many health activists simply do not know what they do not know.
- Equipped with the skills to manage their own condition
- Enabled to make choices about self-care, finding that those choices are respected
- Engaged patients, engaged in their own care
- Equals in their partnership(s) with the physician(s) involved in their care
I met many of the leaders of the E-patient community when I got an impromptu invite to the Second Cinderblocks conference in Kansas City. I loved that event, I thought it was amazing – this entire other community of health activists doing lot of things the mental health recovery movement had never heard of. For the last four years I have been trying to bridge the silo between the recovery movement and the e-patients. The trouble is, for the last four years, I have also been trying to recover from a brain injury. And so finally I am getting better. But I am not able to bridge this gap. There are roughly 400 very active E-patient health influencer types who have lately been getting gigs related to mental health. But do they know about the recovery movement?
Who is this recovery movement?
We are, of course, the original e-patients. We are not clear on what to call our group as a whole yet. We are a mental health civil rights movement comprised of people who fight for human rights related to people with mental health diagnoses. We have been going at this for over 40 years. We have been working on reducing the use of force, on promoting dignity and inclusion for people with mental health labels, at promoting solutions for people who experience emotional distress. We have been developing our own language and terminology related to mental health stuff, we have been patient advocates, or more accurately for many of us, Ex-patients, for a long time.
We have Medicaid Billable (ex)/patient advocacy in 29 states (ie. Certified Peer Specialists). We have held an (ex)/patient led conference for 30 years, Alternatives that draws at least 1,000 people a year. We have memberships organizations like MindFreedom with 10,000 active members. We have a central blog with over 100 writers, Mad In America. We speak regularly at mental health conferences. We are recovery model advocates. We are sometimes, even, included in decision making.
Why a recovery story isn’t enough
Now, I have struggled explaining this history to the E-patients. Here’s another of their websites if you are still trying to figure out who I mean. I had this hard conversation where one I told one E-patient she was a generalist instead of a mental health advocate, and she told me her recovery story. I said, “That’s really compelling, but…” it’s not enough if you don’t know the data. Now, this is a person I love and respect and truly admire. Like, I’ve supported her crowdfunding, been to two big events, recruited people to her team, etc…
But when it comes to mental health, was this person:
- Equipped with the skills to manage their own condition? Not really, if they didn’t know the accurate science on what improves outcomes.
- Empowered? Yes, but are they giving accurate info to help empower others? Not if they are missing most of the info.
- Equals in their partnership(s) with the physician(s) involved in their care? Not really, not if they don’t know where the doctors have been mis-taught with years of systematic corruption.
- Emancipated? Not really, not if they didn’t even how our people have fought 40 years for emancipation and what we are asking for to become free.
So yes, being a generalist patient advocate and also having a mental health recovery story might make you feel qualified to work in the mental health patient advocate sector.
BUT, it’s not really.
Not if you haven’t dug into the science.
I have a recovery story from traumatic brain injury, but I don’t do advocacy in that arena because I haven’t had time to learn the science, the issues, and the past work of other advocates. Yes, I can speak from my own experience, but am I asking for things that actually help people? One person’s story is anecdotal evidence if you don’t know where and how your story fits within the science and the advocacy history in their field.
See this image about bringing the information to balance harms vs. benefits. If you don’t know the history of advocacy in the field, how are you balancing harms vs. benefits?
The E-patients are getting advisor spots related to mental health yet many of them don’t know our history, our issues, and our programs. For instance, check out this blog by PCORI on mental health priorities – a list of disease labels when most Recovery movement advocates would ask for honest medication info, resilience, trauma information, less use of force, more peer support, a host of other things besides “ADHD and depression.” Ugh…
But the E-patients are powerful, they are a force to be respected and honored. They are very much like the recovery movement, dirt poor people working their tails off to fight injustice while still half sick or injured. The E-patient community knows much about health innovation, the health care world as a whole, more about the business side, more about tech; they have much to offer the Recovery Movement. These are my friends. I love them. This is not a dig. This is a plea to be more effective, because so many E-patients do not even know what they don’t know.
Please don’t be a disease model advocate
To paint a broad sweep, disease model advocates are OK with drugs and diagnoses, they say, “they drugs helped me, they helped my uncle, we know there’s issues but some people need them.”
Recovery model advocates, in general, say, “If they drugs helped you, that’s awesome, stay on them. But you got lucky. If you carefully look at the data, that’s a statistical outlier, drugs hurt more people than they help. Diagnoses make people give up hope more so than they help. There are so many better solutions out there. Please talk about our solutions instead.”
BUT, here’s the crux, few disease model advocates have dug into the long term outcomes data. When you try to debate it with them, they lose almost immediately because they don’t know it. People who try look really stupid,
like this research article by some leaders in the American Psychiatric Association:
and this rebuff by our data champion, Robert Whitaker, who is like our Jackie Robinson, taking a lot of personal attacks and staying super cool and on topic.
Because our community relies on different language and a completely different set of assumptions and data, It’s really easy for us to know if you’re with us or against us. We can hear it in about 3 sentences. And many of the E-patients are just busy with other stuff. They’re not working as mental health E-patients. Some E-patients have “heard of” our community, but when’s the last time they came to Alternatives? Why don’t their tweets reflect any of our messaging? Which parts of our community and which of our solutions are they promoting? One of these E-patients, I scrolled a whole month back in her twitter feed and found 1 mention of mental health in like 300 tweets. That’s a generalist, whether or not she has a recovery story – not really the work of a recovery movement activist.
Another E-patient who does mental health work but doesn’t hardly tweet about it…. his recovery story ended at, “I got the diagnosis.” With no statement at all critiquing the diagnostic process or any of the treatment. It’s doubtful he needed two whole years on disability – the disease model itself probably caused a lot of that that disability. It also sounds like misdiagnosed brain injury fatigue. We post-mortem these types of stories all the time. It’s kind of rude, on our part. But, when you know all of the information to balance harms vs. benefits it’s really easy to see the massive harm being done.
For instance, Andrew Solomon’s TED speech says how much he wants everyone on antidepressants because they helped him. And one of our people has read his biography and points out how many of his issues came from a benzo induced brain injury. Plus other types of medication withdrawal issues when he made cold turkey withdrawals that hurt him.
Why you need to listen to patient advocates:
So lots of E-patients all show up at Health 2.0 and say, “Yes, it’s important to listen to patient advocates.” But are the people saying this listening to the original (ex)/patient advocates? There were 1000 mental health advocates at Alternatives, our national conference. There were, what, 5 mental health advocates at Health 2.0? And the 5 were not talking about what the 1000 were talking about. As far as I could tell by their twitter streams, they weren’t really talking about mental health at all.
The conference did this entire Twitter handwringing about the UnMentionables to the right. Well, just before Health 2.0 the Alternatives conference had spend 5 days on solutions to those unmentionables. And none of those solutions were being promoted at Health 2.0
So when I say, Health 2.0 is not listening to our community, they don’t know our data, they haven’t heard our concerns, they aren’t sharing our solutions, it’s true. I did a blog post after our team competed in a business pitch competiton saying that patient advocates were clearly not heard. And not a single E-patient retweeted that post, except one guy who clearly indicated disapproval. Now of course, it was bad timing, so that my concerns about not being heard got mixed up with my concerns about not winning a contest.
But honestly, I wrote that post because I was shocked at how little the E-patients knew about mental health advocates. I was shocked to see the absolute ZERO that our ideas were being shared and yet how much the E-patients thought they could represent us – without our ideas, without our data, without our people. It horrified me, it felt like total betrayal of the patient perspective from people who ought to know better. And I love these people, they are doing the Lord’s work, so in love and respect, I don’t want them to keep messing this one up.
So Here’s what I want to happen:
- If you are an E-patient, Please stop taking gigs related to mental health. Please just stop until you learn about the Recovery movement. Not “heard of it,” but are you actively tweeting, talking, blogging, sharing our data, our solutions, our concerns? If not, please stop accepting gigs speaking for us and our community. You are probably working at cross purposes to what we actually need. Don’t be that guy. Nothing about us without us.
- If you are a Recovery Movement person, learn about the E-patients, follow their blogs, use their techniques, go to their conferences, learn what they have to know about marketing. These E-patients are good people, they are working hard on quite similar issues, mostly they just haven’t heard of us.
- Try to get yourself to Health 2.0. Lord knows they need some better representation from the Recovery Movement. And it’s free admission, sort of.
- If you run conferences related to mental health, pick mental health experts. If your speaker / panelist / judge / etc has a twitter stream that only uses “mental health” once in 300 tweets…maybe ask someone else to represent the mental health community.
- Go to Alternatives. If you want to know what’s happening in the mental health world, come to our conference. It’s everything innovative that is possible happening in mental health. It’s much cheaper, friendlier, more diverse, and much more solution oriented that Health 2.0
So next year when the E-patients say, “WE need to hear from the mental health (ex)/patient advocates,” maybe you can pick some of the 1000 that were at Alternatives instead of the 5 or so that were at Health 2.0. If you want solutions – to see the diversity, the health disparity, the solutions in action, then talk the Recovery Movement. We’ve been doing this for a long long time now.
Nothing about us without us.