Engage With Grace

Currently my step-father is in an ICU with a feeding tube and ventilator. He's comatose and my mother and his doctors are unsure why. I know that my mother and he have talked about his healthcare, and that she understands his wishes for care. She has his healthcare power of attorney.

My mother-in-law seven states away is also in a hospital room, recovering from a serious infection. She's in her 90's. Her five children and their family members are all engaged in her healthcare and know her desires. She has a living will enabling her children make decisions on her behalf should she become unable to. They've posted a sign in her room that tells the nurses and physicians to discuss her blood test results (a daily occurence because of long-term ongoing chemotherapy) with family members who are present.

My best friend's mother is dying. She is also in a serious situation, and the family has decided to withdraw life-support. They too are engaged and able to make decisions where they need to.

In all three of these cases, the family is completely engaged in the process, and knows the wishes of their loved ones. They started talking long ago.

Have you had discussions with your family members about how you would like to be treated? There's a simple way to start. Engage With Grace is a project designed to help you have this discussion. They provide one slide with five questions on it that you can discuss with your family members. You can download a copy of this resource here.

I hope you will look at it. I know that I'll be having this discussion with my family today in the car as we head off for the holidays to see my mother.

Firehoses

I've spent the last week alternately sucking from, and spraying a firehose. I hope I gave as good as I got. Here was my itinerary for the week:

Monday

• Fly in
• Dinner with the organizers of the trip

Tuesday

• 2 hours on internal calls
• 2 hours meeting with the IT Director at Primary Children's Hospital
• 1 hour presenting the HL7 CDA and CCD to a Seminar of about 60 Informatics students and Staff at the University of Utah
• 3 hours meeting with a smaller student group working on various Public Health projects in the department

Wednesday

• 2 hours meeting with Informaticists at IHC
• 1 hours meeting various people from GE Healthcare
• 2 hours on a HITSP call taken in a cab, hotel room, and walking to my next meeting
• 1 hour meeting with a project team connecting researchers to the data available from Intermountain Healthcare, the University Health System, and the VA
• 1 hour getting an overview of a cool desktop devices that uses PCR to simultaneously identify multiple pathogens in about an hour, and actually understanding what it was doing! Thank you Scott, Molly and Kevin. Without your help this summer I would have been totally lost.

Thursday

• 2 hours on rounds at Intermountain Healthcare's new hospital
• 1 hour speaking on Standards Adoption
• 2 hours discussing clinical decision support, terminology and modelling with others from GE Healthcare
• Dinner with Stan Huff

Friday

• 3.5 hours meeting with a group of Informaticists at the VA
• Then I fly home.

My days started at 6:30 in the morning, and ended, well, just look at the time of this post. Salt Lake City is beautiful, and the mountains are covered in fresh snow that arrived Wednesday. While I wish I could have spent the weekend skiing, I haven't seen my family in a week, nor talked to my children (they have a schedule almost like mine this week, prepping for their appearance in a musical review in two weeks, and the time difference means that I constantly miss them when I call home).

I've been learning a great deal about public health and research this week, and been in the company of some extremely bright and educated people. I've also made a lot of new connections and spent time with a number of people that I don't usually see except at standards meetings. It's very interesting to see how these same folk take their standards expertise back into their day jobs.

I spent a good deal of time thinking about why standards are as hard as they are, and I'll share that in a subsequent post.

I'd like to thank Grant Wood of Intermountain Healthcare, Dr. Julio Facelli of the University of Utah, and Peter Haug of Intermountain Healthcare for making this trip possible. In addition, I'd like to thank Stan Huff, Joe Hales, Kathryn Kuttler, Susan Matney, Catherine Staes and Brett South, all of whom I found to be excellent hosts.

Not Huxley, but Shakespeare

I woke up this morning, and the world had seemingly changed overnight. I look forward to a great deal of that change, especially the investments in Healthcare IT that have been described elsewhere by the Obama campaign (see Presidential Politics and Healthcare IT).

I also look forward to change occuring over the next year inside HITSP. My sense is that much of that change will come from inside rather than be imposed from outside, but the uncertainty in the change of administration makes me mildly anxious. I am somewhat heartened this morning by John Halamka's thoughts on what may occur (see Healthcare IT in the Early Obama Administration).

The US National program is one of the most brilliant things I think the Bush administration has executed in the last eight years, and coming from me, that's a concession.

• HITSP has hundreds of organizational members, from a variety of perspectives, and a significant number volunteers contributing to the development of a realizable and rational health information network.
• The NHIN's have made significant progress in the development of the backbone for our health information.
• CCHIT has contributed greatly to improve the capabilities of healthcare IT.

These programs need to continue. They all need fine tuning, but I'd hate to see any one of them go through a great upheavals. My advice to President-elect Obama, his coming administration, and the new Congress with respect to the activities of these organizations would be the following:

1. Continue to support the work of the Office on the National Coordinator.
2. See what HITSP, CCHIT and NHIN are doing before initiating any great changes.
3. Engage with Healthcare IT leaders from those organizations before doing so.

When you compare the investment our National program to what nations elsewhere sped, it is a paltry sum. But the return on that investment is already huge. For every $1 ONC has committed to spending (some not even spent yet) on healthcare IT initiatives, states and regional initiatives have multiplied it nearly ten-fold.

The next year promises to be very interesting indeed. As Miranda said:

O, wonder! How many goodly creatures are there here!
How beauteous mankind is! O brave new world, that has such people in't!
-- Sheakspeare, The Tempest, Act V, Scene 1

Random thoughts on Vocabulary

I've had all to many and numerous discussions regarding vocabulary over the last week, some related to "terminology standards", others to "definitions of terms" , and yet others to how we think.

Over the course of the last few weeks, here are some of the random observations that I have related to the topic:

1. Implementation guides for financial transactions seem to include all vocabulary choices necessary for implementation. Clearly if $ are involved, specifications need to be implementable, and a few organizations have figured out how to ensure that.

2. This simple idea could be very useful: Instead of "creating and maintaining" specific Federal vocabularies that are simply flat or simple hierarchical value sets, why wouldn't Federal agencies:
a. Work with appropriate SDO's to ensure that vocabulary terms necessary for Federal specifications are present with appropriate hierarchies in these vocabularies
b. Manage value sets from those vocabularies.
The benefit could be rather large, especially on the HIT side, where vocabulary maintenance from umpteen sources is extremely tedious and expensive.

3. The US may be a world economic leader, but it's economic impact often works against it in International standards efforts, especially in the area of vocabulary standards. Often the US just chooses to invent its own lists of terms, instead of working with other organizations.

4. Paying for what is done and diagnosed seems to make sense, even to representatives of payers that I've talked to over the last few months, but few seem to know how to implement it if it doesn't begin with the letters ICD. They need to come up to speed on vocabulary, it's not just a list of terms any more.

5. Everyone seems to think that its important to define terms, but few are willing to work with someone elses definition.

6. We can easily spend $100,000 and hours of a gold ribbon panel to redefine four terms, but try to find funding to fix the way hundreds of pages of documents are produced, in part to list out the terms needed for interoperable ELECTRONIC health records...

7. "All the good words are taken", An engineering complaint often heard during design when trying to identify a new object, also applies to standards.

8. We need a new way of norming (see Forming-storming-norming-performing) that includes informing. That way, when start to use and define terms, we can be consistent with what others have learned before (and avoid some of the same mistakes). As someone recently said to me: "Research is not the first instinct of the terminally innovative". I would add, "but it should be."

9. One of the greatest barriers in interoperability to overcome is the "Not Invented Here" syndrome. We need, as developers and users of standards, to avoid that syndrome in our own thinking.

10. You say potato, I say potato. It's all in the inflection. Often its not in what is said, but how it is said that has the impact. In other words, the actual words aren't important.

So, smile when you say that.

HITSP Public Comment Period Begins

Date: September 29, 2008

TO: Healthcare Information Technology Standards Panel (HITSP) and
Public Stakeholders - - FOR REVIEW AND ACTION

FROM: Michelle Maas Deane
HITSP Secretariat
American National Standards Institute

RE: Public Comment Period Begins for Personalized Healthcare, Consultations and Transfers of Care, Immunizations and Response Management, Public Health Case Reporting, Patient-Provider Secure Messaging and Remote Monitoring documents.

The Healthcare Information Technology Standards Panel (HITSP) announces the opening of a public comment period for the following HITSP documents:

• Personalized Healthcare Interoperability Specification (IS08) and referenced constructs
• Consultations and Transfers of Care Interoperability Specification (IS09) and referenced constructs
• Immunizations and Response Management Interoperability Specification (IS10) and referenced constructs
• Public Health Case Reporting Interoperability Specification (IS11) and referenced constructs
• Patient-Provider Secure Messaging Interoperability Specification (IS12) and referenced constructs
• Remote Monitoring Interoperability Specification (IS77) and referenced constructs

The public comment period will be open from today, Monday September 29, 2008 until Close of Business, Friday, October 24, 2008. HITSP members and public stakeholders are encouraged to review these documents and provide comments through the HITSP comment tracking system. The documents and the HITSP comment tracking system are accessible through http://www.hitsp.org/

All Panel and public comments received on these documents will be reviewed and dispositioned by the HITSP Technical Committees (TCs) in preparation for Panel approval in December.
HITSP members and public stakeholders are encouraged to work with the Technical Committees as they continue the process of standards selection and construct development. If your organization is a HITSP member and you are not currently signed up as a Technical Committee member, but would like to participate in this process, please contact jkant@himss.org

In humor there is Truth

Eight something years ago, I got my start in healthcare, and quite a bit has happened since. I'd like to make a point here at the close of my third international HL7 working group meeting. Nothing has been made more apparent to me in the nearly six years I've been participating in HL7 activities than the fact that these are some of the funniest, serious, geekiest, and incredibly intelligent people to work with.

Members of HL7 have a pretty good sense of humor, most of it self deprecating, and I'd like to share some of that. About two years ago, HL7 held an international working group meeting in Cologne, Germany. Cologne is the home of the Dom Cathedral, an immense and inspiring piece of architecture.

Funny

This led to many comments on the similarity and differences between the DOM and the HL7 RIM, some of which I share below:

One is a relic from another century, the other is a church.

Both are built on firmly held religious beliefs.

One is stable.

One is built on solid architectural principals.

One of them actually gets used.

Both have been around for centuries.

Both are eternally under construction.

Both provide rites in a language that is nearly impossible to understand.

You can use either to look down on people.

Serious

These are hysterical, and in some ways, quite painfully true. HL7 is presently reengaging in trying to connect with its users, and has a new vision.

Geeky

Its name is SOA-Aware Enterprise Application Framework (SAEAF -- pronounced safe). I'm not sure why we need a new name for principles that many organizations have been using for years, but that also seems to be geek behaviour.

Intelligent

SAEAF needs a bit of work (especially on the name), but what I've seen so far is very good stuff, developed by some really intelligent people. I won't try to explain SAEAF today, but as HL7 and I learn more, I will.

Feel free to add your own analogies between the DOM and the RIM, or see if you can draw new ones between some feature of Vancouver and HL7.

Presidential Politics and Healthcare IT

I never expected to attend an international standards meeting in a foreign country and then hear, in the plenary session, a political message from the US Presidential campaign. In an ideal world, standards and politics don't mix. The world I work in is far from ideal, and nothing brought that home more than the political messages of the US candidates compared to the messages presented by Canadian Health Infoway, British Columbia, The EU, Brazil and Singapore. We got to see the healthcare infrastructure that benefit the patients in those regions. The US "report", as it were, brought home how badly behind the US technical infrastructure is for providing healthcare.

Speaking as a volunteer for the McCain campaign was Stephen Parente, PhD, MPH and MSc. He presented the McCain plan for healthcare in four points.

1. The first incentive is a $2,500 / person, $5,000 / family tax credit. The credit would be paid for by adjusting (removing?) the tax exemption provided on healthcare benefits. It wasn't clear to me whether that meant for individuals or corporations, but I'm sure you could read the McCain plan elsewhere on the web. Stephen asserted that this would be a break even prospect over 10 years. In part the reason it would break even is because the tax credit would be adjusted upwards on the rate of inflation in general, rather than the rate of healthcare cost inflation. In later discussion on this topic, the question of "single payer" came up, and Stephen responded that culturally the US was not ready for that step yet.
2. Common to both plans was to guarantee access to healthcare for all. I was unable to determine from Stephen's presentation much more beyond that. He did indicate that this would be a fairly large investment, atypical of past Republican initiatives.
3. Stephen spent some time making the point that the cost of the "same" health insurance plan in different states varies, by as much as 100% in cost. This is due to legislation passed in 1945, before the internet and the mobile populations that we have today. Large corporations have an ERISA exemption to this act. So, this incentive would make it possible for patients to purchase health insurance across state lines.
4. The last incentive was unclear to me.

In discussions of the opportunities for Healthcare IT related to this plan, Stephen mentioned that the tax incentive could provide some opportunity. He did make the point that spending by consumers based on the tax credit would still be subject to consumer choices. He thought that one opportunity would be to develop a Health card that would enable the exchange of clinical information. He also discussed using and sharing of data available to payers through attachments, such as labs, with other providers, possibly enabled in some way through health cards and authentication technologies available in them.

When I asked a question about how the McCain plan would impact the ongoing work of ONC, including AHIC, HITSP, CCHIT, NHIN, and HISPC, Stephen responded by saying that this "is an open discussion that needs to happen."

Speaking as a volunteer for the Obama campaign was Blackford Middleton, MD, MPH, MSc. Blackford's presentation included highlighting of the three points of the Obama campaign. However, he stared first describing some of what the problems were. Many of us in the standards space have seen this data before, but using it seemed to show some awareness of the audience.

The three key points he touched on included:

1. All access, and in presentation of data on patient satisfaction with the current system, made the point that US patients are ready for change.
2. Modernization of the healthcare system. Included in this part of the presentation were some studies reporting where some of the costs are and where the benefits of EHR use go (most of it to others than providers). As part if this point, he discussed the investment of $10B in healthcare IT over 5 years, an investment on par with some of the topics presented by other countries in that session.
3. Lastly, Blackford discussed connecting healthcare IT providers and public health, focusing on more wellness, instead of illness.

Blackford, when asked the same question about the role of ONC et. al., felt that the role of these organizations would be strengthened under the Obama plan. The opportunities for healthcare IT were discussed under point #2 above.

I found some interesting points in both presentations, but am far from an impartial observer, as I'm pretty well known as a liberal Democrat with regard to healthcare issues. I'll repeat the admonition that opinions mentioned in this blog are my own, and not those of my employer, or any of the organizations the I volunteer with. Some of my own observations follow:

Stephen needed to be introduced, as he's not necessarily well know in HL7 circles. His discussion of Healthcare IT, health cards as an opportunity for fixing the problems, and use of payer data, showed to me disconnect from the work of HL7. He did use the "Attachments" keyword, but that's only one part of a much bigger picture. When I asked the question about ONC and the alphabet soup, I felt his response was a little like a deer caught in the headlights. I found myself strongly questioning how a $2500 / adult tax credit could "trickle up" into investment in Healthcare IT. I also found myself further questioning how a tax credit that simply shifts money from an employer tax exemption to my pocket would change my overall healthcare costs. Those additional expenses need to be paid for in some way, and that will either come out of my benefits or salary increases, or will impact employment.

Blackford is already well known in Healthcare IT circles. He connected with the audience first by reporting on some of the reasons that we need to invest in Healthcare IT. His slides included geeky references to Star Trek and Dilbert. He had a much better story on the opportunities for Healthcare IT for this audience, and I personally think, for patients as well. Blackford is helping to create AHIC 2.0, and is well aware of the role and work of ONC, HITSP, HISPC and CCHIT in the US. Blackford did not discuss the details of the Obama plan, however, a complete document from the Obama campain describing those details was present in the program materials. I wish the McCain campaign had been smart enough to do the same.

Overall, I enjoyed the discussion of the US campaigns approaches to healthcare, but also have to question whether this was an appropriate use of HL7 member's time. If this had been a meeting of the HL7 US Affiliatiation (an imaginary body), I could see where this would fit. Given that this is the Plenary of HL7, I have to question the approach. Next time I'd actually like to see a presentation from what I still like to call the US National program, which would be much more comparable to what we saw from other HL7 member delegations.