I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.
Here’s an example of why – a true story from tonight’s email.
Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:
This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem. He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is: is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.
He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!
Blew my mind. We have a long way to go, Dave.
———- Forwarded message ———-
From:
Date:
Subject: Biking PD study
To:
I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?
The P2 Collaborative of Western New York is one of the communities of the Robert Wood Johnson “Aligning Forces for Quality” project. (I just realized I’ve never written about this excellent project! Must fix. They’re smart, methodical, data-driven and effective. There are 16 communities in the Aligning Forces project, and P2 is one.)
The P2 people are just brilliant – they’ve taken my e-Patient Boot Camp idea, intended for industry, and are breaking it down into packages for consumer/patients and for clinicians. Here are some links from today’s session with clinicians:
Corrections added Jan 10 as noted. See sections marked “Update 1/10″. See also my comment tonight on today’s disgusting experience of trying to sort this out, and our ultimate rescue.
I often hear about how patients are a major part of the cost problem – their “non-compliance,” their wanting everything they can get, wanting it for free, etc. So, let’s see what happens when a patient who wants to help cut costs gives it a try. …
In that case I tried to fathom a so-called “Explanation” of Benefits, which was in fact unfathomable. (The FTC forced cigarette makers to be truthful in labeling; can’t they force insurers to stop using “explanation” on something nobody understands?)
This time my wife and I are shopping for vaccines. Specifically, shingles. And trying to be a responsible consumer turned out not to be easy.
In the past couple of years I’ve gotten used to being on stage, but this July I’ll be doing it in a different way: for the first time in three years, I’ll be on stage singing, with my buddies in a choral competition: the World Choir Games, in Cincinnati.
So tonight, for the first time in three years, I stood on the risers and sang.
Longtime readers know singing used to be a big part of my life. I sang in school and college, and ten years ago I joined the Nashua Granite Statesmen, a men’s barbershop chorus. (Lots of people have heard of barbershop quartets, but not many know we do it in choruses too!)
For years they (we!) were the perennial New England champion and would go to international competitions. I’m no soloist but because of this great group I got to compete at internationals in Montreal, Indianapolis and Nashville.
At my diagnosis, five years ago this month, I asked Dr. Sands if I should stop singing to conserve energy, and he told me no – it’s not good to drop life activities that you love. (It seems I’d, um, talked about it a bit…)
This is a re-post with new URL – for some reason the original of this post failed.
Precisely at 9:00 a.m., five years ago today, the phone rang and my life changed.
There were two calls, actually, from two physicians. I don’t recall which was first, but one was Dr. Danny Sands (my primary), and the other was orthopedist Dr. Jeffrey Zilberfarb. Five days earlier I’d seen Dr. Sands for a physical; in my pre-visit agenda email (PDF at right), I’d noted “Shoulder: range of motion complaint,” and that as we’d discussed earlier, I had made an appointment to see Dr. Z on January 2. That visit had been cordial, unremarkable; he’d x-rayed my shoulder.
But in the x-ray Dr. Zilberfarb saw something unexpected, and he’d contacted Dr. Sands. Dr. Sands called me and said, “… I pulled up the x-ray on my screen. Your shoulder will be fine – it’s just a rotator cuff problem. But Dave – there’s something in your lung.” (See lower image.)
He said we didn’t know what it was – could be a fungal thing, could be a scar left over from some old infection – but “we need to find out.” I said, “So, you need me to get back in there?” He said yes.
Imagine hearing “There’s something in your lung” when you don’t feel sick – something significant enough that your doctor calls you at 9 a.m. You immediately start thinking about that spot, looking for any sensation, any sign of trouble. You start wondering, “Do I have a time bomb inside me??” And that’s not a nice feeling to have, when your doctor’s on the phone.
He said he’d called radiology and ordered a CT. In parting I asked, “In the meantime, is there anything I can do?” And Dr. Sands replied: “…Just go home and have a glass of wine with your wife.”
And that is a sobering thing to hear from your physician. Continue reading →
Well, it’s January, Janus time – the Roman god of beginnings and transitions. He looks back, he looks ahead… he’s amazing!
Soon I’ll post about 2011 and 2012. But first: while putzing with my website today I revisited some way back content, which sets the stage even better for looking ahead. So, a quickie to start the year:
Video oldies – three short talks from the start of my public speaking about healthcare.
I just found video of the first talk I ever gave (18:03) at a healthcare business conference – e-Patient Connections, Oct. 2009. It’s amazing to go back there and see what we were looking ahead to, back then.
The Society for Participatory Medicine had just been formed, and its journal had just launched its introductory essays.
Two years later, two dozen e-patients were brought together at the event to create an e-Patient Bill of Rights.
Six weeks later, December 2009, was this Quantified Self talk (14:43) at Wired headquarters in San Francisco.
I loved relating with the tech geeks at QS; it was the first time I dared show the spreadsheet where I’d tracked my tumor sizes.
btw, socializing after this event I asked Matthew Holt of Health 2.0 for a bit of start-up advice. He never gave me a penny, of course :-), but his advice worked out.
As 2012 starts up, I have a feeling that patient engagement’s time is here. The movement is credible and has become tangibly real. Consider these 2011 tidbits:
In January Time had its first article about a googling patient who helped a doc nail the right diagnosis.
In April, TEDx Maastricht was the first TED event to be heavily patient-centered, with many presentations by e-patients and empowering physicians
July’s e-patient tour of Spain, resulting in the Spanish translation of the e-patient white paper
In the government section, the US Department of Health & Human Services had a four-city road show about consumer engagement – “Putting the ‘I’ in Health IT”
In August the “SCAD sisters” were featured in the Wall Street Journal and have since become internationally famous
The first e-Patient Boot Camp, presented as a Master Class in the Netherlands at UMC St. Radboud
In October the Mayo Clinic held its first e-patient day – with five unknown e-patients (not just the usual cast of stars)
December’s news of mega-blogger (and new cancer patient) @Xeni’s rude awakening to the poor state of health IT, and the need to take the reins ourselves: one of her scan CDs contained images that were rather obviously “some dude’s.” (On Twitter she referred to it as “the #ghostpenis.”) Then she had a horrid first MRI experience, which led quickly to the start of a “My First MRI” patient training initiative.
In a matter of days she became a full-fledged engaged patient, thoroughly on top of her data – within a week she was helping docs read her scans on her Mac, because they couldn’t view them on their own machines
She ditched the rude MRI shop and got her next one in a much nicer place.
There’s more, but suffice it to say, 2010 looked nothing like that. e-Patient is finally beginning (just beginning) to show up in the mainstream. And 2012 looks to be stronger.
I’m en route today to New Orleans for a meeting about adding something back in to primary care that used to be there, a long time ago: care for behavioral and mental health issues. The project is to unite mental health with primary care.
It’s worth explaining why this is being fixed, and why I’m involved. First, please watch this presentation by Ben Miller of the University of Colorado, an expert voice in the field. It describes the NIAC (National Integration Academy Council), a new project of AHRQ, the Agency for Healthcare Research and Quality. This New Orleans trip is for a meeting of NIAC, of which Ben is a leader and I’m a member.
NIAC is the steering committee for AHRQ’s Academy for Integrating Mental Health & Primary Care:
For years they (we!) were the perennial New England champion and would go to international competitions. I’m no soloist but because of this great group I got to compete at internationals in Montreal, Indianapolis and Nashville.
