A Story About Quality of Care

Recently, Tom Daschle invited Americans to discuss health concerns. In the healthcare standards space, you'll find that most of us have a large number of stories to tell. Most of our personal stories in healthcare are about something that could have been done better. They feed our passion for better healthcare, and help us to formulate opinions on what is of strategic importance.

A new story entered my repetoire recently. My step-father died last night, after a long struggle to recover from open-heart surgery over six weeks ago. This was his second open heart surgery in two years. I'm still somewhere between Shock and Denial and the Pain and Guilt stage of grieving. As I go through these stages, questions go through my head on what we could have done differently to ensure he survived.

Two questions gnaw at me:

Was he getting the best care in the area that he could have? I cannot answer that question as well as I would like to be able to. Even so, my mother and I probably have better answers than most patients or their families would. I have a rather elaborate network of physician contacts located in that area and elsewhere. The gave me good anecdotal feedback on the quality of physician care provided by the hospital where his surgery was performed. My step-father has had heart problems for quite some time, and my mother was rather engaged to make sure he had high quality care. Even so, I feel like the amount of information we all had was really insufficient. What would have been most helpful to us would have been a simple listing by procedure of the success rate and number of patients treated at area institutions, classified by the risk category of the patient. My step-father would have fallen into the high-risk category.

Was his cardiologist was the best provider of care for him, or would another have been better? His most recent cardiologist determined that he had yet another valve failure, something his previous provider hadn't found. The newer provider could possible have found that problem in the workup for the open heart surgery he had two years ago. Might that have resulted in his survival?

How would I have objectively compared his two cardiologists? I would like to have seen how a similar case mix of patients faired for each provider. I don't know exactly how to measure success or failure, but others do. I would also be interested in comparing the costs for those results.

A logical outcome of how our health system works is that information about quality of care needs to flow through the entire system. When I'm purchasing health coverage, I really want to know whether my payer is providing the best possible healthcare for me and my family. We need to extend the measure of quality of care not just to the providers of care, but also to those organizations that manage and negotiate the costs and quality of the care that we can obtain. Payers seem to be willing to pay for performance. They should also be willing to report on their own.

As for myself, I think I will measure results by the stories I hear. Tell me yours.

Book Review

Not too long ago, I ordered a copy of "Critical: What we can do about the Health-Care Crisis", by Senator Tom Daschle (President-Elect Obama's choice for Secretary of HHS) with Scott Greenberger and Jeanne Lambrew. The book was sold out in my local bookstores, so I ordered it online. It arrived yesterday, and I've just finished reading it today.

The book itself is fairly short, about 200 pages. Organized into five parts, the book first introduces the crisis in healthcare, talks about what's been done to reform healthcare in the last century, and describes why these efforts failed. Next it describes the Sentator's ideas for solving the problem. He closes by calling for change in the healthcare system that sticks. I found the first three parts of the book to be of little interest personally. However, I understand why they are included in the book.

The key focus of the book is the notion of a Federal Health Board, and independent body modeled after the Federal Reserve. The members of the board would be experts in healthcare appointed by the President, and approved by Congress. The board would set policy on how private insurers participate in Federal health programs. It would recommend coverage of proven drugs, procedures and therapies for the treatment of specific diseases. What makes the idea of the FHB march is the expansion of the Federal employee health benefits and Medicare programs to include plans that would allow members of the public to participate. It might also unify federal coverage so that members of the military, the Federal government, and those obtaining care under Medicare obtain similar benefits for similar costs.

Other key objectives of the FHB made in the book include:

• Focusing on prevention
• Ensuring universal coverage
• Equity not just for general healthcare, but also dental and mental health coverage

In addition to these goals, the FHB would also continue existing programs to increase transparency into healthcare costs, improve and measure quality of care, and change the focus from payment for services to payment for performance.
Daschle speaks somewhat about the use of electronic health records in the book, but devotes only a handful of pages to the topic. He notes that the US is woefully behind the rest of the world in use of healthcare information technology, and that we could save as much as five percent of our total healthcare spending (some $1.66 trillion in 2003) by implementation of a fully electronic healthcare system. He suggests tax breaks, loans or loan-guarantees to health-care institutions to enable them to upgrade their health IT systems.
This isn't a great book, but it does have some interesting insights. If you will be dealing with healthcare policy issues in the US, I'd recommend reading it.

The Right Tools

The right tools make any job easy. I've just had that proved to me again. Recently I was called upon to XDS-I enable a prototype that already worked with XDS. Now, you have to realize that while I know quite a bit about XDS, until about four weeks ago, I could honestly say I knew nothing about DICOM and get away with it. When I implemented XDS 4-5 years ago, it took me about 4-6 weeks of effort. When I implemented ATNA (TLS and Audit Trails), it took me about 2 weeks. I expected this DICOM project to take me 2-3 weeks of effort. Boy was I surprised with the real effort.

I spent about two days reading the DICOM specification, spent an hour talking to a DICOM expert (which if I had done sooner would have cut my DICOM reading in half), and a half day reading the XDS-I specification. Then I hit the web searching for DICOM toolkits written in Java. I found several, and after some detailed review, I picked a fairly reputable one to work with.

After adding 15 lines of Java code and modifying about 50 lines of a 600 line XSLT stylesheet, I had XDS-I enabled the application (it already understood XDS). The code and stylesheet modifications took about 2 hours to write.

An IHE profile in half a week; that's worth bragging about. But, I can go one better: Last Saturday night I used the implemention of the XDS-I that I had developed and the same toolkit to implement the PDI profile. It took me about six hours. Once again, the key was having the right tools.

Most of what I work with is open source, or freely available tools. I love Java, Tomcat, Xerces and Xalan. I use Eclipse as my Java IDE. One of the benefits of clearly written standards and integration profiles is that others are implementing them for me. That allows me to focus time and effort on improving other things. I don't need to do what others have done just to show I can do it better. I'd rather save my time and effort to work on things that others haven't done before.

I can no longer say that I know nothing about DICOM, but I can still honestly say that I didn't write one lick of code dealing with it. So, this year, I've been playing the role of a patient at RSNA IHE demonstration, and maybe next year I can play Radiologist.

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.