Is Your Doc IT Savvy? How an ePatient can find out.

How would you even know?  How could you find out?  This 15-minute video is my attempt to help patients answer this question.  It's designed to interrupt the Health IT Video a few seconds in...



This was one of my assignments for my Consumer Health Informatics class this term.

   Keith

Not necessarily an ePatient

There are days when I feel like an outsider to the ePatient movement.  An alien looking in.  I may show up in a list of e-Patients somewhere, but I'm not really a patient, because I get paid to work in healthcare (or so the theory goes). But I feel like a patient, and I act like one. In my day to day work, I think first like one. At the same time, I've been told in no uncertain terms that I can't be, because I work for "The Man", and am a cog in the wheel of the healthcare industry. Others, even more supportive of patients are thrown in the same boat, because they too are part of the system.  And God forbid you should be an MD, except with some very good supporters in the wings.

I've seen the healthcare industry be dumped on because it doesn't properly engage with patients.  Over the past year I've seen numerous conferences and industry events picked on because the don't respect patients enough in some way. They don't offer patients scholarships, or make the prices affordable for patients, or have patients on the organizing committee, or as speakers. Provider organizations, ACO's, HIE's, et cetera, are all at fault because patients aren't present.

At the same time, I know how to do things on a budget. I know of many organizations that I can join for free, and some for as little as $30 a year that provide me with a great deal of inside track information. Geeks like me don't get to go to every conference then want to.  I'd love to go to AHIMA, AMIA or MedX, but they are unlikely to be on a list of conferences I'm approved to travel to (maybe when I become Chief Geek). Yet, I know many ways to get into a conference that don't require me (or my employer) to foot  the bill. You want to get into a conference for free, the way the pros do?  Offer to speak, and not at the last minute (a couple of weeks beforehand), but 6-11 months before when the call for speakers or papers goes out, and have a good message. Or get someone to fund you to go. If you represent a stakeholder group and they cannot fund you, are you really representing them without any of their skin in the game? Or are you just pretending to?  If you have a message to send, and you aren't getting on the right agendas at the right time, whose fault is that? The organizers?  Or yours? If you aren't at a conference to provide a message, then you are there to take one back. If the take-away is something you cannot share, should you be expected to pay less for it than anyone else?  I'm not so sure about that.

Equipped, enabled, empowered and engaged is the motto. Be it. Don't ask for a free ride, or complain when it isn't given. Find a way; learn the landscape, and engage back. Figure out who to talk to and when to talk to them to be effective. Stop whining, and start doing.

In some ways, I think as an insider, my job is a lot harder.  I have to weigh every decision against what it means to take home a paycheck, and still figure out how to do the right thing, in a way that works for everyone.  A simple "patient" can argue that they should be supported, and everyone will clap, and nobody above them exists to care about the business impacts of that message.

But insiders like me, we've got to sell that to an audience that doesn't want to hear it, and make it march, and sound like a good idea for them, and the upper-ups.  Let's see, what was that message?  Oh yeah, "Spend less money on healthcare, and provide it better and cheaper". Back in the day when I sold computers out of a retail storefront, we had an expression that explained how that worked.  You see, we sold below cost, but we made it up on volume.

Now, I'm not saying the healthcare industry is right, or that things don't need to change.  But what I am saying is that it isn't whether you are an insider or not, or a patient or not, but rather what you do and the message that you send that matters.  And if you want to be tagged as a "Patient", go for it, but at the same time, work it like a pro would, you'll be far more effective.

Empowering Us

One of the real challenges for the e-Patient movement is in the self-sufficiency (or perceived lack thereof) of patients.  Among all the P's in the healthcare environment:

• Payers 
• Physicians
• Providers 
• Politicians
• Policy makers
• Paycheck writers
• Pharma
• Product makers (vendors)
• Professional advisors (consultants)

All of these are considered to be sufficient to protect their own interests.  However, none of them view patients as being sufficient enough to project their own interests, and all of them feel that it is their role to speak for patients.  At the same time, patients (myself included) reject each of them as being adequate representatives of what we truly need and care about (see this list as an example).

As a general rule, patient's don't lobby, testify before congress, negotiate prices, aggregate themselves into societies or groups of like minded people (there are some exceptions for each).

So, how can we (as patients) get what we need?  I have some thoughts on this topic, but would love to hear yours.

Who writes Clinical Notes?

This question was the fundamental question being addressed in a recent Structured Documents Workgroup meeting.  At the root of it is whether or not a patient authored note belongs, or doesn't belong in the CDA Consolidation Guide as it is further developed by HL7.  One of the reasons for concern is that at present, HL7 published documents are the fundamental unit of "standardization" (and in fact, this is true for just about every SDO).  While we need better ways of publishing this content, others, such as ANSI and ISO, and regulators which reference HL7 standards are still referring to these standards by the name of the publication.  If patient authored notes become part of the CDA Consolidation standard, it becomes much easier to cite (or in this case, re-cite) them in ongoing regulatory efforts.

One of the challenges of course, is that this also expands what CDA Consolidation is, and certainly expands the efforts for the next ballot cycle on the CDA Consolidation guide.  At issue here, I believe is a need to incorporate some work developed by one part of the community that is competing with the need of other members of that same community to meet a more restricted set of goals.  I'm quite sensitive to this tension, and I often fuss myself about the crazy schedules that SD sets for itself.

Structured Documents spent quite a bit of time discussing this last year.  In September, we established the following principles for inclusion in the CDA Consolidation product (or product family, it still isn't clear which this is).  This was the agreed upon outcome:


Scope of Consolidation: “CDA templates at entry, section and document level applied in primary clinical information records and for exchange supporting continuity of care.”

Criteria for Inclusion:

• New material will be included based on evaluation of these criteria:
• Nine original implementation guides are grandfathered
• New material meets the following tests:
• High reuse of Consolidation templates
• Covers primary data (documents originate for delivery of care, becomes part of patient record, in contrast to secondary use; templates, of course, can be reused)
• Used for provider/provider, provider/patient communication
• High use of semantically interoperable templates (“model of meaning”, in contrast to “model of use” templates)

Note, that nowhere in Structured Documents definition of "Clinical Information Records" do we make any distinction based on who the author of the document is.  I think many assumed that because we used the term "Clinical Information", the assumption was that it must be generated by a clinical practioner.  But we never said that, and many would argue that patients can be just as, or even more clinically informed that their providers about some content.

The patient [authored|generated] [note|document] (however you want to call it), meets the tests described in the criteria for inclusion above. 

1. The data in the document is intended for delivery of care, and can become part of the patient record.
2. It reuses the General Header constraints, and adds to them to identity documents that have been authored by a patient.  It allows for use of existing CCDA sections and entries in the document to support the patient generated content.
3. It is used for provider/patient communication.
4. The templates contained within it follow the model of meaning structure.

We (The HL7 Structured Documents Workgroup) agreed today to include this content in the next round of Consolidated CDA balloting.  This step puts patient generated content in health information exchanges on equal footing with clinician generated content.  And when you think about it, that silly little clipboard that goes into your record when you first start in a physician practice, is nothing more than the first of many pieces of patient generated content that appear in your medical record.  It's about time we acknowledged the contributions that patients already make to their records, and the need for more of this kind of communication between patients and providers in the standards for exchange.

     Keith

Wouldn't it be interesting if ...

"Wouldn't it be interesting if ..." the tweet starts.  And continues: "... there were a standards development organization founded/ran by patients?"

There is an idea in here that is absolutely right, and an implementation that isn't ideal.

Let's start with what is right.  What is right is that patients are the ultimate consumer of what we do in Health IT, and they absolutely need to be at the table and well represented.

What is wrong is simply that standards are about consensus among all stakeholders.  Any standards process that gives one body more representation or control than another is broken, even if it does so with the best of intentions.

I've been involved with standards efforts where one stakeholder group had more power than others (even today this is still true in S&I Framework -- just ask yourself who sets the agenda), and can tell you that it can be challenging.  Been there, done that (on both sides).  Certainly it is "comfortable" to be with the stakeholder group in power, but it doesn't lead to the best outcomes for all.

The harder thing, but probably more useful to do is to become influential in an existing community. Been there, done that. If you can manage it, it results in more success.  Rather than attempting to compete on dramatically unequal footing, what you wind up doing is co-opting the existing community on your own terms.  You have to start softer.  You aren't trying to change the world all at once (see reboot or re-boot).  Just trying to get the direction shifted a little bit, then a bit more.  Until eventually, well, you get the idea.

This is happening to some degree inside HL7.  There are people who are seeking change, and making it happen (e.g., Mobile Health, Quality, Free IP and other initiatives), bringing in other stakeholders to help.  The balance of power is shifting.  Directions are changing.

The biggest challenge for patients in all of this is understanding how they/we can participate. Some are techno-geeky, like me, but with non-healthcare backgrounds (also how I started).  Others are non-techno geeky.  Others have a healthcare background.  And others, are simply just frustrated with the way things work today.

The biggest challenge for organizations wanting to engage patients is figuring out what it means to be a representative of that stakeholder group.  The usual classifications here don't necessarily work.  The minimal requirements for classification of stakeholders (according to section 2.3 of ANSI Essential Requirements) is:

1. Producer
2. User
3. General Interest

A fourth category that often shows up is "government", from the perspective of regulators or imposers of the standard. Producers and users (usually purchasers) often have an obvious financial stake that makes it possible for them to obtain funding to participate in the development of standards.  Government too has a way to fund its participation.  But patients most often fall into the "general interest" category, and from that perspective, often don't have a funding source for participation.

More often than not, other non-profit organizations devoted to representation of patients or consumers will often show up, and do have funding.  But these organizations aren't the same as the stakeholders (and in fact, there are SOME I would NOT have represent me, because I don't agree with their perspective).

I like the idea of patient scholarships, but it isn't clear how that would work, or what the proper governance is.  

The final challenge is how to address the fact that we can all fit ourselves (as I did in this post on Patient-Centric Health IT) into the "General Interest" category.  While each of us can fit into that category, we have different perspectives based on our involvements as producers or users or other categories as well.  And we all balance those differently.  General interest in this list is almost an "other" category, as in Not Otherwise Specified.

What may be important are the various "declarations" that a participant can make:

1. Do you spend money or resources to implement or conform to the standard?
2. Do you receive money or resources to implement or conform to the standard?
3. Are you in a position to require use of those standards in a particular market?

I find it difficult for many who would argue that they are representatives of patients who can say yes to either 1 or 2 as being strictly representative of the "patient" stakeholder group.

So, wouldn't it be interesting if, we were to find a way to enable patients more participation in the development of standards?  Certainly it would be.  But, I think the journey will possibly be more interesting than the destination.

Bullshit Headlines

I hate it when journalists put a bullshit headline or spin on a story to attract attention.  Here are a few that caught my attention recently:

• Doctors not eager for you to touch your own health records
• Electronic Health Records: Doctors Want to Keep Patients Out
• Most U.S. Doctors Would Limit Patient EHR Access
• MOST DOCS DON’T WANT YOU TO SEE YOUR FULL ELECTRONIC MEDICAL RECORD
• Most Doctors Prefer Not Sharing Records with Patients
• Few Physicians Say Patients Should Have Full EHR Access

Here's the original article title with a link:

Accenture Survey Reveals Most US Doctors Believe Patients Should Help Update Their Electronic Health Records, But Shouldn’t Have Access to Their Full Record

And here's the most significant quote from the announcement:

A new Accenture survey shows that most US doctors (82 percent) want patients to actively participate in their own healthcare by updating their electronic health records. However, only a third of physicians surveyed (31 percent) believe their patients should have access to their full health record (see Figure 1). These findings were consistent among 3,700 doctors surveyed by Accenture in eight countries: Australia, Canada, England, France, Germany, Singapore, Spain and the United States.

Thank you Accenture for providing an accurate title.  Unfortunately, our media seems to harp on bad news.

The good news:

• 4 out of 5 doctors want you to have access to update your health records, 
• 96% believe patients should have some access to their record, 
• and 3 in 10 believe that patients should have access to their FULL record.

The bad news?  It appears that some of the media doesn't know how to make any money from good news.  These headlines aren't on articles from obscure media outlets, either.

Could it be better?  Damn right.  But badly harping on what is bad isn't going to make it better.  If you really wanted to harp on the bad parts of this news, I ask you, where is the reporting on the patient outrage at this report.  Or perhaps the investigative reporting on why providers aren't offering what they say that they approve of?

Surely you could find a patient or two to interview about access to records, and the importance of it, and what we need to do to get better as a nation (if not, I can link you to a double dozen and more).  Or maybe you could talk to some healthcare providers on either side of this story.  Come on.  Get with the program.  And next time, give me some real headlines with the real news.

-- Keith

P.S.  And yes, this headline is SEO optimized, just to double down on the point.

ONC seeks input on Consumer eHealth

Provide Your Input to Inform ONC's Consumer eHealth Strategy On Monday, March 25, 2013, ONC, in collaboration with Cornell University, launched a new web platform for obtaining public input to inform health IT strategic planning. Check out the new PlanningRoom site, and provide your thoughts. ONCs initial focus is on consumer eHealth. To encourage public input to inform the consumer eHealth strategy, ONC is partnering with Cornell University's eRulemaking Initiative – an academic research group working with Federal agencies to increase public participation in government decision-making. You can visit PlanningRoom now through May 9, 2013, to participate in discussions and provide comments on specific topics. The site includes discussion topics and questions to help guide the conversation.

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Check the Box for ePatient

My children are at it again, this time my eldest daughter who is 14.  The last time we were at the pediatrician's office, she told them to "Check the Box for ePatient" when we stopped by to request her records.  It's a pretty simple request, but I'm sure they didn't really get it.  But I think they could.

I thought a little bit more deeply about this last night.  As a marketing campaign to patients, this has viral potential.  "Check the Box for ePatient" is about as easy as "Click the [Blue] Button", and it's a way to easily communicate to your provider that you want to be engaged.

Now, having checked the box, what will the provider do differently?  Actually, there shouldn't be anything different in the way they treat you as they would any other patient, but play the game with me.  What do you as a patient expect out of a provider having told them you want to be engaged?  And what is different about you from their other patients?  What should they be able to expect from you?

The next Ad Hoc Award will never be repeated ...

Long time readers of this blog probably understand the rules.  For new readers, it's very simple.  I am the sole arbiter and judge.  There is no nominating committee, but nominations are certainly welcome.  I won't award more than one a year for the same kind of service (and since this nominee is unique, I'm certain that won't be an issue).  I try to keep the number of awardees to five per year (no reason, as I said, the rules are arbitrary).  In general I try to give awards to folks who would not otherwise be recognized for their contributions.  One tradition is that I have given out an award on the same day that the HL7 Ed Hammond awards are announced.  Not so much to compete, but more to build on a trend.

I don't see how the current award possibly could be duplicated; ever.  As I mentioned previously, I just finished reading Ten Faces of Innovation.  This next recipient is a collaborator extra-ordinaire, but even more importantly a story teller of unsurpassed skill in both word and deed.  I first learned about this individual when I watched the HHS announcement of the Meaningful Use regulation.  This awardee has done a great deal to raise the awareness of Health IT to patients across this country, and even Internationally.  Their work has seen HL7 appear in circles that nobody would ever expect.

Without further ado, I proudly welcome the next recipient:

This certifies that 

Regina Holliday, Patient Advocate and Artist

Has hereby been recognized for outstanding contributions to the forwarding of Healthcare Standardization through Art.

Regina, welcome to "The Riding Gallery".

For those of you who don't know Regina, see her blog for some truly amazing story telling in both art and print.  I'm a very proud member of The Walking Gallery which she created to raise awareness of patient needs.  Her work was recently featured on the cover of The Illustrator's Journal.  If you look closely at the upper right hand corner, you can see a reference to HL7.  If you happen to be at HL7 this week, and want to see an example of her art, I'll be wearing it.

Top O' the Week

Top of the week is The Healthcare Standards Interconnections, a visualization of how the Healthcare Standards community works together.

 

The top three posts of the month are:

1. I wanna be an ePatient A rhythm track is being written (or so I hear), and Dave and I are going to YouTube this, looking for willing performers in Boston area..., maybe in Cambridge for the HL7 Working Group meeting?  In case you haven't registered for that, today is the last day to get the  Early Bird Registration rates.
2. Meaningful Use Standards Summary  There are a couple of other things happening with quality measures that I need to follow up on.  See for example this quick tweet from @drtonyah on smoking status, to which I owe a deeper response (Thanks for digging that one up).
3. MeaningfulUse IG for Public Health Surveillance likely to Change  I've heard no news on the last post so I owe a follow up on the Public Health Surveillance guide.  I know at least one meeting has already occured.

Upcoming Events:

Well, I already mentioned the HL7 Cambridge Working group meeting, but what I didn't say was that there will be an opportunity to attend a half day seminar on standards for meaningful use on Monday October 4th. 

 

Today is also the last day for IHE PCC Proposal Submissions for 2011 development.

 

Recent Events:

Yesterday I spent the afternoon at a Knowledge Management roundtable discussion on EHR adoption.  If you missed it, search #KMForum for a quick recap.  A few quotables:  Emminence-based medicine referring to providers who practice medicine based on their "authority", and "We are in our EHR puberty" referring to the fact that we are headed into a period of rapid change.  The topics ranged far and wide from the main point, and it was a very lively discussion.  I enjoy these meetings.  @janicemccallum who was also there will be writing a blog post on this.

 

On Tuesday I spent an hour with about 165 people from 8 different countries on a free webinar, describing the HL7 CDA and CCD Standards. There are some really good questions, but we didn't get time to address all of them.  Look back here next week for some of the answers.

 

Electronic Medical Records: The Healthcare Information Experts Weigh In

Crossed my desk this morning while giving the CDA/CCD presentation for HL7.  This was a really good discussion two weeks ago, which lead to the creation of the ePatient Rap.  I'm glad to be continuing it...

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Thursday 9/16: We heard from these four healthcare information professionals two weeks ago at a breakfast meeting and thought you would enjoy hearing their perspectives on what is happening with medical records adoption. They will share professional and personal experiences that will underscore the challenges. Larry Chait will moderate and the audience will be encouraged to join in with questions. The focus is on what it will take to encourage personal participation in electronic medical records management. We all have a stake in the outcome!

Electronic Medical Records: The Healthcare Information Experts Weigh In

Thursday, September 16, 2010, 4:00 - 6:00 p.m., Microsoft, 201 Jones Rd., Sixth Floor, Waltham, MA 02451. Directions.

Panelists: Elaine Alligood (VA Technology Assessment), Dan Bogaty (Partners Healthcare), Keith Boone (GE Healthcare), and Janice McCallum (Health Content Advisors)

Details: http://kmforum.org/blog/?p=792

Registration Form for Thursday: http://s94896443.onlinehome.us/tinc?key=t0p0UHsg&formname=reg_thursday

Registration Comments (Cost, time, meeting format): http://kmforum.org/blog/?page_id=22

Top O' the Week

It's Friday and time for the recap of the week.  Top content for this week beat out all contenders and was a least twice as popular as the next most popular post. It was I wanna be an e-Patient, a semi-rap I wrote on a short ride back from last Friday's Knowledge Management breakfast.  Dave and I have chatted about this and we really do want to do a You-Tube version of it. My wife is even eager to assist with her production management skills.  We still need a good rhythm track, so if you want to contribute one, please let us know.

Stats for the last 30 days are also pleasing.  The e-Patient Rap tops the charts, followed by the post on Meaningful Use Standards Summary, and in third place and still doing strong is Can you Imagine this Nurse on a Harley?  Could the rise of e-Patients to the top and decline of meaningful use actually forshadow what will happen over the next five years?  I certainly hope so.

BTW:  The ePatient Rap also broke new records for me elsewhere.  It was the most tweeted post on this blog, beating even the Meaningful Use Standards Summary with almost twice as many tweets!

Please keep your suggestions coming.  I have some great ideas for new content mostly coming from readers.  Rene wants a one page summary of Meaningful Use for readers outside the US.  Another reader really NEEDS a one page diagram showing the integration and harmonization activities of all the different standards groups involved in healthcare activities.

The CDA book is coming along.  I'm up to about 220 pages, and have about another 100 or so more to go before I do a final edit and ship it off to the publisher.  My hope is to be able to take the first orders in early October, but that's a lot of text left to write, and not a lot of time to do it.

Upcoming Events
If you are located in the Boston area, the HL7 Working Group Meeting and Plenary Session on Monday October 4th will be worth attending, even if you've never been to an HL7 WGM before.  After the plenary we will be spending the entire afternoon providing a free tutorial on the HL7 Standards for meaningful use (Note that while the tutorial is free, you still need admission fee for the working group meeting on that day, see the brochure for the fee schedule).  The end of tomorrow is the last day to take advantage of early registration discounts.

If you aren't going to be at the working group meeting, but still want to learn about some of the standards (CDA and CCD), you can also attend a free HL7 webinar on September 14th.

Oh, and you remember that Knowledge Management breakfast that resulted in the e-Patient Rap?  Well, we are continuing the discussion about EMR Adoption in Waltham, MA in a Panel Discussion on Thursday, September 16th. 

I wanna be an ePatient

Not sure what the tune is to go with this, but it's sort'a semi-RAP with lots of attitude.

I wanna be an e-Patient
To be a patient like Dave
Give me my damn data!
'Cause it's my life to save

I want to be an e-patient,
Under Meaningful Use
you can have my consent
to share without abuse

REFRAIN

Send me my damn data,
in a Patient Summary
You can use a CCR
But I'd prefer a CCD!

REFRAIN

I got my healthcare Inbox
You can send it DIRECT
To my HIE
XDS with CONNECT

REFRAIN

Hey I'm an e-Patient
Measurin' your quality
I'm gonna share my data
with other patients like Me
 
REFRAIN
 
Hey I'm an e-Patient
and you can be to
Just need ask your doctor
for your C32
 
REFRAIN


This blog post constitutes my formal submission for entrance to the The American College of Medical Informatimusicology.  I now return you to your normal weekly broadcast.  Enjoy the long weekend.

       Keith
    ^
e-Patient

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Updated 6-26-2011 with the video taken at #HealthFoo