I’m at the Connected Health conference, and more than once the question has come up: if patients have access to editing the medical record, will chaos break out?
I keep thinking: Free and low-cost cloud collaboration systems can track who entered something and who edited it. Why not medical records?
One example: Wikipedia – actually, all wikis. Another: Salesforce.com, popular-priced sales management system.
Medical records vendors, do you offer that?
We can track who edits records now. If As a doctor I made a mistake and then went back to try and cover up there would be a clear audit trail. If my medical record, as a patient, was only for me then I guess it wouldn’t be a problem. But becausevmy medical record isn’t just for me it could be an issue. I could remove diagnoses that might impact on insurance premiums. Of course that might impact on my care as well. I could add in diagnoses that might encourage my doctor to prescribe drugs which I shouldnt need like strong analgesics. It all sounds a bit far fetched, doesn’t it? Those things aren’t real likely to happen, are they?
Tell me more about how you see this working?
Tell me more about how
Hi, Anne Marie. After I posted this some discussion at the conference quickly shifted to thinking about people who are unscrupulous or just plain disagree or maybe even are crazy, in one sense or another. All those cases exist, but they ought not to impede the good things that are possible with good people. So, what to do?
Behind it all, I picture a world where the patients run their own care, and even insurers (if any remain) are chosen and controlled by the patient. (Of course this means insurers get to say “I don’t want YOU, buddy” – a genuine mutually empowered business deal, gasp!)
But today we are where we are. So in the discussion I wondered, what if there were essentially two tracks to the record – entries by professionals and entries by the patient and family? I imagine data being entered by either, but perhaps they could appear in different colors.
David, that is the essence of the audit trail. And this is exactly what I have been preaching for years, this is the real health record. And forget about a generally applicable patient controlled care. It is not realistic and not feasible. 95% of the patients will not want this, at least not for the next couple of generations (see my Tallinn speech: http://www.icmcc.org/2010/10/18/patient-expectations-in-the-digital-world-tallinn-2010/
Great speech and slides (PDF), Lodewijk. Did you post the slides to Slideshare or some such? I especially like the diagram of “participatory.”
I rescued your comment from the spam filter. Not sure why it thought you were evil, with only one link!
What a far-ranging speech. I recommend it to everyone who’s interested in this subject.
I’m puzzled by your insistence that a personal health record isn’t feasible, but the speech may have a tip: if you define it as *created, filled and managed* by the patient, yeah, that doesn’t seem feasible. But I’ve presumed it would be my *collection* of info from elsewhere, roughly like a folder of bookmarks, plus my own additions. What do you think about that?
I was over on KevinMD where I’d read Susannah Fox’s post about changes in how e-patients use the internet and how maybe the terminology itself shuld reflect those changes. (Sorry. — I’m too fuzzy for links tonight.)
This was my comment over there:
Y’know, thinking about it, it strikes me that use the web for health care info differently than I used to.
I more and more skip the searches (google, bing, yahoo, etc.) and go straight to a source such as WebMD’s symptom checker system. But because a lot of the other content on WebMD is Pharma funded, I prefer to gather info elsewhere.
That’s when I’ll use an engine like Google, but not for a general search. I use Google’s “definition” function, using the possible prognosis. Sometimes I limit the search to only .edu domains because I trust them more.
Sometimes I skip the whole search process and go directly to a trusted source like nih.gov, CDC.gov or the Mayo clinic site or MedLinePlus(whose addesses eludes me at this moment).
When I do go to a search engine, it’s with a pretty defined search term such as “BipoLar Disorder Support Group” or “Fibromyalgia Clinical Trials.”
In my fantasies (ahhh…. fantasies!), I’d like some kind of Wiki that could be locked by my doc and myself that would contain various different sections.
A section like my official Dx’s with clickable links to definitions. Another section could contain my current meds and other conventional treatments… because I’m SO tired of filling them out on forms.
There could be a separate section for doctors notes, and another for the results of any labwork, x-rays, and other tests. And, of course, a place for patient comments and reactions.
Going to a specialist could be as simple as giving them the passcode to my Wiki, which could then be changed when the specialist’s work is completed. But they could start their own section for their notes before they’re locked out.
I’d also like a section for the support groups I’ve found or participate in, along with other alternative or supportive treatments that happen outside the doc’s office , like home exercises, or changes to my diet, so my doc knows what I’m doing to give his/her conventional treatment the best chance of working.
Some pages only a doc could edit. Some only I could edit. There could be an email link for my doc so all I have to do is click to pull up a form to fill out and send when I have a question or concern.
I have two docs who work together on my bloodwork so that they each get the results no matter who orders the tests. It would work well for them to simply have all lab results in a single place, rather than havig to remember to fill out the lab form with a request to fax results to the other doc.
Best of all, going to the ER would be a snap. I could give my code to my trusted “ICE” (In Case of Emergency) contact, which is prominent on my cell phone and in my wallet.
As for how to “label” who we’ve become? Personally, I dislike labels unless they’re self-imposed.
But, I guess with how I use the web regarding health care now is that I’m more of a “health care data miner” who’d much rather be a “WikiPatient.”
Hi Dave, I could not react directly to your last message.
I think you are the exception in the PHR definition history. Look at what has been written about it, starting with Paul Tang. (See also my quote of Holmquest http://blog.icmcc.org/2009/03/25/observations-25-march-2009/).
I have less problems with your view, but still, that means there is a record kept separately. If your PHR would be automatically linked to your EHR, like in my view the EMRs will be, then you achieve what I would like to see, an EHR that is a container of links to all existing EMRs as well as your personal narrative and the narrative of all other carers around you.
I wanted to make clear that an EHR deals with health and should by default contain (i.e. link to) any information that concerns the patient’s health, whether personal or medical.
We wouldn’t have this discussion if from the beginning we had included the patient in the concept of a health record.
PS I hope your provider now likes me writing better :)