Earlier this month I wrote that the OpenNotes project had kicked off. It’s important – if you haven’t read about it, please click that link.
My primary physician and I are participating, but candidly I didn’t expect to get much out of it: as I told a friend, “I’m not sick!”
Yet, the very first time I used it, I noticed something from my visit that I’d already forgotten. And that made me realize I’m not as observant / “adherent” / engaged as I thought.
Here’s what happened.
Shortly after my visit I got a typical PatientSite email “You have a new message on PatientSite.” I logged in and it said my physician’s visit notes were ready to view. So I did. Yeah yeah yeah, interested, I remember that, yeah he said that, gotta remember to follow up on this and that.
A week later I thought “Gotta remember to follow up on … what?” Already it had slipped my mind. So I logged in and looked. Oh: actinic keratosis – “you should have this removed.”
Actinic keratosis (Medline Plus article) is a crusty skin thing. It’s pre-cancerous – usually doesn’t cause trouble but sometimes it does.
I had one removed last October (I blogged about it). And I had a skin cancer removed when I was in my 20s. Worth paying attention to, huh? I knew it, but here’s the thing – when I thought about it in the past, I never knew where to go dig out the notes. This time I just clicked over to PatientSite, and there it was.
Preliminary observation: now that the notes are easily accessible to me (and I know where to look), I *am* looking at them, so I see how much I wasn’t.
And that led to my taking action on an item I’d conveniently (and dangerously) forgotten. Here’s a note I sent today to my primary, Dr. Danny Sands :
From: deBronkart, Richard Davies
Message Date: 6/30/2010 1:35:55 PM
Read Date: 6/30/2010 2:34:16 PM
Looking at my 6/12 visit notes last week, I was reminded that you said I should get the (probable) actinic keratosis removed. I just called and they’re booking in August. Is that okay or should I ask for something sooner?
As I say, the interesting thing to me is that I already considered myself pretty engaged. On my previous visit, before OpenNotes, I’d had Danny paste the visit notes into an email to me…. which I misplaced and never looked at.
Today I knew where to look – the obvious place. I’m not drawing any conclusions from one anecdote, but that’s a good thing.
Interesting anecdote, and I wonder if it is representative of a more general tendency. I, too, rarely review my email, or notes stored in a physical notebook or hard drive. While I haven’t used OpenNotes, I have shared notes on my blog about about some of the health care issues I have faced (most notably my experience with platelet rich plasma treatment for elbow tendinitis), and find that others’ comments often offer serendipitous “remindings” to reflect on or followup on issues I’d forgotten about. If I’d only sent out periodic email updates about my progress, I’d be walling myself off from this kind of serendipity.
I hope the 12-month study will be able to capture the kind of anecdote you’ve shared, as they may reveal useful and potentially useful features to include in a system for supporting a more open collaboration between doctors and the people they examine / treat.
*Ugh*: I went to my hospital’s website to select a dermatologist… they have an option to only list physicians who use the PatientSite patient portal. Not a single dermatologist uses this portal.
(I know why this is; I’ve inquired about it in the past. It’s because, as at most hospitals, the doctors are independent businesses, not employees, and they don’t have to offer patients that service if they don’t want to.)
Ugh. How disempowering to me, and what crappy customer service.
(I know the people from Mayo, Kaiser, Cleveland Clinic etc are gloating at this, as well they should. This is stupid, and the only reason it persists is because patient empowerment isn’t important enough yet in the culture.)
Double-ugh: In my online visit history, I can’t even see the name of the dermatologist who removed my similar lesion last September.
Here’s everything I can see about that visit (which involved three issues, btw, plus treatment to freeze the lesion off):
09/30/09 Outpatient ACTINIC KERATOSIS
No indication of who the doctor was or anything else.
I called the “find a doctor” number from the website, and all the guy there could do was give me the phone numbers of the two offices that have dermatologists – neither he nor the website had info on appointments. Bleah.
I called back and they looked up the appointment in the records THEY can see. I sure wish they’d open that up to us – it would, obviously, reduce their costs.
Grumpy today, ain’t I? It’s partially because I just saw a great health info website, healthcare.gov, so I’m newly impatient with things in healthcare that I know don’t have to be so inferior to other industries.
I mean, if the Obama administration can develop something that good in less than a year, I know private organizations can achieve it. Right?
Next chapter: I looked up the doctor on the website, and called the listed number. I’d seen him in the outlying office, but the number went to the downtown office, and the website said he didn’t practice in the outlying office. They transferred me to that office, where I made an appointment.
Trying to be helpful, I told the clerk that the website was wrong, and asked how I could report it. “What do you mean?” she asked, nicely. “So they can fix it,” I said. Reply: “Fix the website? I don’t understand.” “Never mind…”
You might find this note interesting that was sent out by the HHS librarian who helped develop HealthCare.gov to the MedLib listserv:
“As a part of the Health Reform legislation requirements, we are releasing a
portal to provide health insurance information to the public. The goal is
for it to assist individuals looking for insurance, and also looking for
information about coverages. It is in development to add additional
information, such as information on actual private market plans including
benefits with cost-sharing and base premiums, as well as more detail on the
new high risk pool program as premiums and benefits are defined. Gathering
the data to put this website together has been a Herculean effort, and I
know that you as librarians understand that!! The July 1 release pulls
together as much as could be done in a short deadline, since the deadlines
were not adjusted as the bill took longer and longer to pass!! I do
believe that you will find valuable information for yourselves and your
library users, however – even today – the release date. The information
concerning Medicaid, CHIP, and High Risk Pools is more developed than the
areas involving private insurance coverage at this point, but there is a lot
of good information at the site.”
Note also that a Boston-area company, Percussion Software (www.percussion.com), provided content management software for the site and “The entire project – including design, content, integrating health insurance plan data from thousands of sources, application development, and implementing the Percussion web content management system – was built in 90 days.”
Impressive. And it shows that a better user experience is possible!
And, damn, why am I always the one raining on the parade?
I think it’s a beautiful site, well-designed, user-friendly–at least, that’s what I would have thought if I’d started looking at it on my laptop. Unfortunately, I started out from my iPhone. Too much of HealthCare.gov is Flash. Not iPhone/iPad friendly.
Otherwise, yeah, great job. Maybe they should launch a mobile version. With no Flash.
It’s only parade-rainy if you say it is… if you wanna be Denny Sunshine you could say it like “Here’s hoping they make a non-Flash version for us iP*d users!” :–