A Piece of Paper as a Personal Health Record

February 11, 2013

GodinI live in a world looking for digital solutions to some of health’s biggest problems.  I love watching this all play out.

So yesterday Seth Godin tells the world that a piece of paper could save your life.  He’s advocating that everyone write down their history and carry it around with them.  Yes, your personal health record on a piece of 8 1/2 by 11 inch paper.  As much as it kills me to admit it, there’s a certain amount of wisdom to this.  And not novel, really.  Patients of mine have been doing this for years.

I see loads of chronically ill children.  What’s remarkable is that there’s no way for me to easily get key elements of their child’s history into the EMR.  Despite the tens of millions  of dollars spent on EPIC, it can’t be done in a way that’s practical.  Sure we could scan their paper summary as a media file, but if you know anything about EPIC, it is probably easier if the patient just kept the paper in their wallet.  What’s more discouraging is that if the child came from another institution with a fancy, competing EMR, it still couldn’t be done very easily.

And I don’t need pie charts, reams of data, exhaustive diaries, books, ‘complete medical records’ or thumb drives.  Just the facts to start with (QS data may be important later).  I might even suggest that patients try to limit their summary to one page, focusing on the major issues.  Physical constraints force to think about what’s important.

What would be really cool would be a nicely done, thoughtful sketchnote graphically detailing key elements of a patient’s history.

It’s remarkable that despite how far we’ve come it still comes down to a piece of paper.  We have such a long way to go.


{ 12 comments }

BrianSMcGowan February 11, 2013 at 7:07 am

You touch on a critical lesson of what it means at the most basic of definitions to be “empowered.” When my father was originally diagnosed as a ‘heart patient’ he began to record each of his visits with his healthcare team. From his cardiologists in 3 different states to his rehab team in 2 different states, from his primary care team, to his gastroenterologist (is it heart pain or reflux?)- he saw the need to be the connector of his own care. My father was not intending to become a quantified selfer, he was simply trying to ensure that time and efforts were not wasted with repeated tests and blood draws…he saw the record he kept in a microsoft word document as his lifeline with the added benefit that he could share it with me and from afar I could help him ask the right questions at the right time…and to record the answers in language that he could understand.

Was my father’s system perfect? Not even close. But it was the only option available to him – and over time he got better at recording what he needed to record.

Fast forward to today and his digital version of his healthcare journey is nearly 10 years in the making. He can tell you on what days he saw what specialist, and he can tell you what they did, and what they learned.

Being empowered does not mean that he became expert in the clinical subject matter, instead it means that he eventually became expert in sharing his journey. And any physician who doesn’t see the necessity in this empowerment is either stuck in the dark ages, or is content to practice medicine with only a limited view of a patient’s clinical history – in either case, my father (because of the vision he had 10 years ago) now knows that he has a right to find a healthcare team that is open to his participation and open to his record keeping. And quite frankly, I am not sure he would be alive if he hadn’t taken this record-keeping action so many years ago.

DrV February 11, 2013 at 7:43 pm

Powerful, Brian. Let’s package this as an independent post.

Katie McCurdy February 12, 2013 at 4:47 pm

Brian, I love this quote:

“he eventually became expert in sharing his journey”

When we talk about ‘expert patients’ (or ‘patient experts’?), we often are talking about patients who are experts in their disease area. But patients like your father are experts in their own medical history. They can conjure up facts, dates, test results, and more from their immaculate records. I have recently become such a patient, visiting doctors with my big binder of test results and my medical history timeline:

http://e-patients.net/archives/2012/03/visualize-this-an-e-patients-medical-life-history.html
(which Susannah so nicely referenced below)

I don’t think it’s an understatement when I say that doctors are pretty blown away by patients who are so organized. I’ve personally prevented a number of duplicate blood tests and procedures because I’ve had my records with me and am so *intimately* familiar with them that I can pull out key moments of my medical story on demand.

My vision is for us to provide patients with better digital tools so that more of them can take full ownership of their medical stories. A paper summary is also great, but I think paper can only go so far when you get down to the details. I’m surprised no one has mentioned the Health Record Design Challenge yet – http://healthdesign.challenge.gov/submissions – a reimagining of the printed health record. There were some fabulous entries.

BrianSMcGowan February 11, 2013 at 7:16 am

BTW: Here is more evidence to your point.

Challenges to nurses’ efforts of retrieving, documenting, and communicating Pt care info bit.ly/155RulC

Susannah Fox February 11, 2013 at 12:10 pm

Bryan,

Thanks so much for writing this — I starred that same Seth Godin post, hoping a fellow health geek would think out loud about it.

One of the top 5 posts on e-patients.net in 2012 was Katie McCurdy’s “Visualize This” comment about her home-made (and beautifully fancy) sketch of her medical history:
http://e-patients.net/archives/2012/03/visualize-this-an-e-patients-medical-life-history.html

I think a lot of us would like Katie to design one of those for each of us, or for our children, or our parents.

And I’ll give a plug for my own work and share the Pew Research Center’s findings about health tracking:
http://www.pewinternet.org/Reports/2013/Tracking-for-Health/Summary-of-Findings.aspx

The headline is that 7 in 10 U.S. adults track some aspect of health, but digging deeper:

Of those who track some aspect of their health (or the health of a loved one), 1/3 use paper & pencil to do so.

Of those who track health indicators, 1/3 share their notes with someone else. People living with 2+ chronic conditions are more likely than other trackers to share notes, particularly with clinicians.

I see these numbers as a thermometer reading, a snapshot. Now it’s up to other people to diagnose the patient and set a course of treatment :)

Susannah Fox February 11, 2013 at 12:49 pm

One more thing (written with a smile since isn’t that what Steve Jobs said before he revealed the coolest thing AND isn’t that what patients say when a clinician has her hand on the doorknob, about to leave?)

I forgot to mention that Regina Holliday’s first medical mural was her idea for a medical record cover sheet, a one-pager with basic facts about the person:

http://cocovillage.blogspot.com/2009/05/medical-facts-mural-1.html

DrV February 11, 2013 at 7:55 pm

I just grabbed that vintage of R Holliday into Evernote for posterity. Thanks for chiming in and consolidating that Pew data. (note to self: write a post on the recent Pew data).

Regina Holliday February 11, 2013 at 3:51 pm

Susannah is right. A one sheet with a picture, mind you, pictures are so very important, was my first idea as an advocate. But even then it was not enough to be just a piece of paper. It needed duplication, on line or on walls. I think we are in the valley of stop gap measures, someday we will ascend that city on the hill. Until then back-ups are very important be they be in my KP portal, my dropbox or on paper in my wallet.

Larry Keyes February 11, 2013 at 4:11 pm

I recently worked on a project converting data for a patient registration system called Covisint DocSite. One of the enhancements that we were requesting was a “patient snapshot”… a single page, or set of pages (printable) that included a patients contact information, current medications, current managed problems, allergies, visit notes, and other recent history. We wanted this to be printable; something we could give to the pt to give to their family or their provider. It was a very tough sell. The vendor’s point was “if it is already online why do they need to see it in a printed report?” Our point was even if it was online, the information was scattered over multiple screens and sections, and there was no way to get the “snapshot” of the current state of the pt.

Catherine Rose February 11, 2013 at 6:41 pm

I capture my daughter’s 18 specialists, 6 surgeries, school therapy and feeding plans in 5 pages in Word. I wrote a blog to help other parents create their own: http://bit.ly/12nzpex

Similar to Regina’s (but not nearly as artistic), here is my draft 1 page summary for Emergency situations (or for just sharing information about Alexis rapidly): http://bit.ly/11Cs00b

All in all, Alexis’ Complex Care Doctors have been thrilled to receive my documentation because it boils the essence of her EMR and each appointment they take my documents and INSERT them into their hospital records. When other doctors encounter it, they always say – “Who made that lovely summary about your daughter?”

My response, “I did.” We all must!

Dave Chase (@chasedave) February 11, 2013 at 6:51 pm

Bryan – I ordered that book. Sounds interesting. I’m also going to take a closer look at what Susannah shared. We’ve been thinking about how we can fill this sort of need as it’s a logical part of what we’re trying to accomplish with our Collaborative Health Record for the patient. Would love to get your thoughts on it at some point.

Fard Johnmar February 12, 2013 at 10:58 pm

Dr. V:

Thanks much for developing this post. I saw this post from Seth and well and it got me thinking about how while some are racing toward the digital singularity, many people are still focused on the old technologies that still deliver what they need. Attention and human to human interaction.

I thought you and other readers might be interested in some relevant commentary I published previously focusing on the health = humanity theme: http://digihlth.info/r1.

Previous post:

Next post: