Engage with Grace

Today, you'll find that many healthcare bloggers have devoted their blog to the post below. My wife and I have have completed the exercise. In my case, I do not want end of life care in a hospital. When I cease to be me through brain injury or diminished mental capacity, I do not want to be supported. I want my ashes scattered from the top of Mt. Scowden on the Tioga Crest.

This guest post was written by Alexandra Drane and the Engage With Grace team.

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it. This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences. But our end of life experiences are about a lot more than statistics. They're about all of us.

So the first thing we need to do is start talking. Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven't had.

Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

To learn more please go to www.engagewithgrace.org.

Outliers

It's too cold for rock climbing and kayaking but not yet cold enough for ice climbing or skiing, so I'm using the time to read through the books on my nightstand and on my Kindle.

I just finished Outliers by Malcolm Gladwell (author of The Tipping Point) , a well written thought piece on what really produces the movers and shakers in each generation.

Darwin would have loved the heady questions raised by this book. Is success more about nature or nurture? What's more important the Intelligence quotient or Emotional quotient. Is the Stanford-Binet test a useful measure of your likelihood to succeed? Can Harvard really tell the differences among 3000 valedictorians with perfect SATs applying to college?

Here's my own story put in the context of the book.

When I was 12 years old (1974), my parents went to law school and I spent my free time after school scouring surplus stores in Southern California. Sunny Trading Company on Torrance Boulevard was my treasure trove. For 10 cents I could buy NAND gates, Shift Registers, and LM555 digital timing chips. Reading through National Semiconductor product catalogs and the entire contents of our local library's Dewey Decimal 620-622, I learned digital logic, analog to digital conversion, and the basics of microprocessor design.

Then, in 1975, a major breakthrough. The Popular Electronics January issue announced the Altair 8800, which made home computing possible and I devoted myself to learning about "personal computers".

I spent my high school years programming in numerous languages from Assembler to Fortran to Cobol to BASIC. I used minicomputers, microcomputers, and mainframe computers. In 1978, I designed the software and hardware for my first experimental medical device - a computer capable of gathering visual and audio evoked potentials then performing signal averaging and fast fourier transforms in real time.

All of this was possible because I lived in Southern California in the mid 1970's where surplus stores had cheap integrated circuits and because my local library gave me access to great books about emerging technology. I truly believe that this foundational portion of my career was more about time and place than me.

From high school I went to Stanford, started a software firm and began the parallel life of medicine and technology that leads to the present.

In Outliers, Gladwell points out that Bill Gates, Steve Jobs, Larry Ellison, Scott McNealy and Bill Joy - the leaders behind our largest technology companies - were all born in 1955. They were 20 when the Popular Electronics issue was published, just completing college (or dropping out of it). The were at the beginning of their careers but without families, a mortgage or an established job in a traditional technology firm. They were at the right place at the right time to ride the wave of emerging technologies.

Of course they were smart, but numerous people are smarter. Gladwell concludes that once you are "smart enough" then culture, circumstance, timing, and luck are key differentiators for success.

Our lives are complex paths with daily choices that lead to success or failure. I know that I could have ended up in a dozen different careers, lifestyles, and economic strata. However, as Outliers suggests, the world around me shaped my outcome and I can really link my Harvard faculty position to my parents choice of living near an electronics surplus store in the 1970's.

Outliers is worth reading to understand the external context which shaped some of the most successful people in our generation.

Reducing IT budgets

I oversee the budgets of several technology organizations, all of which are under pressure to react to the faltering economy. At BIDMC, capital budgets are constrained, operating budgets are being tightly managed, and no staff reductions are planned. At Harvard Medical School, senior leaders are seeking a 10% reduction in the school's operating budget. How can IT organizations approach operating budget reductions?

1. Engage all your staff. They can identify operational inefficiencies, redundancy, and savings opportunities. Any budget reduction results in rumors, speculation, and fear of job loss. Engaging your staff in the budget process empowers them, informs them, and reduces their worry.

2. Find the low hanging fruit - vacancies, travel/training, consulting fees, food/entertainment, and other "nice to have" expenditures are the first place to start any budget reductions. I passionately support training, but when faced with budget cuts, most staff would elect to support salaries and reduce training.

3. Identify service reductions - all IT projects are a function of scope, resources, and timing. Reducing the scope of service and determining what projects to cancel is an important part of budget reductions. One challenge is that organizations often have short memories. If you offer a budget reduction linked to a service reduction, you may find that the budget reduction is happily accepted but the service reduction is forgotten in a few weeks. In fact, many departments throughout the organization will suggest that budget reductions are possible if more automation and technology is added to their work processes. Reducing service at a time when customers need more service may not be the optimal approach, which I will discuss further below.

4. Extend timelines - assuming that resources are diminished and scope is already reduced, the last lever a CIO has is to extend the timelines of new projects. Instead of delivering new software this year, delay it to next year. Existing staff can take on more projects only if they have a longer time to do them.

5. Accept risk - Our job in IT is to ensure stability, reliability, and security. 99.99% uptime requires multiple redundant data centers, but there is not a precise cookbook as to how this should be done. I have implemented 2 data centers a few miles apart and not a grid of worldwide data centers. Why? Because risk = likelihood of a bad outcome * the impact of that outcome. When creating budgets, I decided that the likelihood of a regional disaster which destroys the IT capability of the entire Boston region is small. The likelihood of a single data center fire, flood or explosion is measurable, so I chose to mitigate that risk. In times of budget stress, a re-evaluation of risk is appropriate. Can network, server, storage and desktop components be kept for a year or two beyond their usual lifetimes? Can maintenance contracts be reduced or eliminated and mitigated by having spare components handy? Just as with service reductions, the strategy of increasing risk to reduce costs must be widely communicated, so when a failure occurs, everyone understands it was a risk accepted as a result of budget reductions.

In general, I do not recommend fighting budget reductions with overly dramatic stories of doom and gloom. That is not professional. Instead, CIOs should provide senior management with a list of services and a list of risks, then decide collaboratively what to do. This ensures that the CIO and IT is seen as an enabler and team player rather than a cause of the budget problem.

Having been through numerous budget reduction experiences over the past decade, I have witnessed the paradoxical effect that IT budgets are sometimes increased when organizational budgets are decreased. Savvy administrators know that economic downturns provide the urgency to re-engineer processes and accomplish politically difficult strategic changes. A short investment in automation can lead to long term reductions in operating costs. Thus, this downturn may be the opportunity to eliminate paper, streamline labor intensive manual methods, and consolidate/centralize for economies of scale.

Over the next 60 days, I will work with Harvard Medical School administration on all these issues and report back as to what we collectively decided to do.

Cool Technology of the Week

This week I had the opportunity to carry the ultimate geek utility belt - an iPhone 3G, a Blackberry Bold (AT&T) and a Blackberry Storm (Verizon). I tested all three devices in parallel for emailing, web browsing, and usability. Here are my first impressions:

The Bold has a bright 2.8-inch glass LCD screen with 480 x 320 resolution (same as the iPhone 3G) and is very easy to read. I started using bifocals last week and I really appreciated the Bold screen as compared to my Curve. The increased graphic density makes a big difference for the web browser since it's now possible to render an entire page on one screen. An easy to use zoom feature and scroll bars make browsing much more "desktop like" than previous Blackberries. The HSDPA 3G wireless over AT&T is fast and the coverage in Boston is quite good. The WiFi linked easily to my hospital infrastructure. The Bluetooth bonded seamlessly with my Prius. The only downsides - the battery life of the Bold is about a day and half, compared to 3 days on my Blackberry Curve. I could not find a way to turn off the 3G and use EDGE only. The QWERTY keypad is very similar to the 8800 series, without the generous key spacing of the Curve. I thought this would be a problem but after a few minutes of typing, I adapted and was able to type at my usual 60 words per minute without errors.

The Storm has a bright 3.25 inch glass touch screen with 480 x 360 resolution and tactile feedback. The entire screen is a mouse button that depresses but since your finger only contacts a small portion of the screen at time, your brain believes that the screen is a push button under your finger. The on screen keyboard is a full QWERTY keyboard when the device is tilted horizontally. When you hold the Storm vertically, it displays a "SureType" keyboard - the same doubled up keys found on the Blackberry Pearl. They question that I'm sure everyone is asking - was the typing experience on the Storm better than the iPhone 3G? The answer for me, is yes. My brain wants a key to click when I push it. Even though I really like the engineering of the iPhone screen, I have not achieved better than about 80% accuracy at 60 words per minute. With the Storm in full QWERTY mode, I easily adapted to the touch screen for typing. "The Quick Brown Fox Jumped Over the Lazy Dogs" actually appeared as typed, time after time.

In general, I found the Blackberry Storm easy to use although the multiple buttons on the case made navigation less obvious and elegant than the iPhone. The Storm has EVDO but no WiFi. For me, the WiFi is not a major need since most airports charge for WiFi and I prefer wide area networks. I've heard others complain about the lack of WiFi.

I'm sure many will ask - is the Storm an iPhone killer? I think this question is just as inappropriate as is the iPhone 3G a Blackberry killer?

They are different devices with different purposes. The Blackberry Storm is an email device that includes a great screen and a virtual keyboard with tactile feedback. The iPhone is a small computer running numerous lifestyle applications and an email client that is not optimized for high volume email use. They are both excellent devices for their respective niches.

What am I going to use? As with every technology this question needs to be answered with a specific set of requirements in mind. I need to email 21 hours a day while walking, commuting (only at stoplights), while in meetings, and while in airports. Although I really like the idea of touch screens and believe the next generation of handheld computers will focus on touch screen user interfaces, I still prefer the Bold's keyboard which is easier to use, faster, and more accurate for on the go typing than the Storm or the iPhone.

Next week I'll handoff these devices to my staff for testing and we'll see how they work for others with different requirements.

The Culture Code

Every year, I travel a few hundred thousand miles through Europe, Asia, and the Middle East. I've observed that the cultural context of each society has a major impact on behavior.

Gathering with locals in Lyon, France to have a simple meal of bread, cheese, and vin de'table is very different from gathering with locals in Plymouth, New Hampshire to have a Subway sandwich. Not better or worse, just different.

Courtship rituals the Spanish Steps in Rome, Italy are very different than in a pub in Newcastle, England.

I recently read The Culture Code by Clotaire Rapaille, a cultural anthropologist who has developed a method for describing the reasons people around the world live and behave as they do. The book helped me understand some of the variation I've seen around the world.

For example, when purchasing a car, Americans seek a car that will express their identity. Germans will seek a car that optimizes engineering. American children will build a fantasy castle from Lego. German children will use Lego blueprints to build an exact scale model.

The chapters on relationships were fascinating. The descriptions are stereotypes, but interesting nonetheless. Culturally, Americans have unrealistic expectations of perfection in relationships (our 50% divorce rate is good evidence of this). English men spend a great deal of time with their mates at the pub and build a complex set of relationships outside the home that leads English women to fight for the attention of their men. Wander around Quayside in Newcastle on a Saturday night and you'll see the way that young women dress to attract the attention of their men. The Japanese view marriage as a practical partnership, often arranged by their parents. This does not imply marital bliss but the 2% divorce rate suggests it aligns with expectations.

Other chapters in the book explore Health, Youth, Home, Food, Work, Money, Shopping, and the way other cultures perceive America.

Although the idea of reducing complex cultural histories to a few key words (Culture Codes) is overly simplistic, several ideas ring as true

* Americans treat food as fuel rather than a high quality pleasurable experience to be savored
* Americans view buying over the internet as a focused task, while shopping at a mall is a social event
* Americans crave change, so making perfect products of high quality that last a long time does not align with our desire to have constantly improved products that work well enough for a short time and can then be replaced.

After reading the book, I have a new framework for approaching food, business meetings, and travel throughout the world.

Worth reading.

Harmonized Standards for the Genome and Family History

As one of the first humans to have my genome sequenced, I'm passionate about the standards used to record genomic and family history data. The initial national effort just completed the public comment phase and is not yet approved by the HITSP panel, but we hope to gain panel approval in December and present this work to the AHIC Successor on January 8, 2009 for acceptance by Secretary Leavitt before he leaves office. Here's a summary of the work thus far

IS08 Personalized Healthcare is the overall interoperability specification for exchanging genomic information and family history. It references several other HITSP components:

C32 HITSP Summary Documents Using HL7 Continuity of Care Document (CCD) Component is the lifetime medical record summary.

C80 Clinical Document and Message Terminology Component includes the vocabularies used to precisely describe the genome and family history.

C83 CDA and CCD Content Modules Component is a detailed overview of family history pedigrees and genetic test results in the lifetime medical record.

C90 Clinical Genomic Decision Support Component is used to communicate genetic and family history information from healthcare IT applications to clinical decision support systems which provide an assessment of risks of diseases.

During our discussion of genomic and family history data, we focused on privacy, since keeping this information confidential per the wishes of the patient is paramount.

Concerns we discussed include:

a) Based on Provider’s different needs, would there have to be an “all or nothing” option for the family member’s access authorization?
b) Who makes the decision about which information is relevant?
c) If the family member is not capable of authorization or has passed away, is legal representation required?
d) What guidance does a Provider use to evaluate the access authorization?

We selected two HITSP Privacy and Security Components to meet these needs.

TP20 HITSP Access Control Transaction Package ensures only authorized people can view the data.

TP30 HITSP Manage Consent Directives Transaction Package provides an electronic record of patient privacy preferences and consents.

I look forward to engaging my own family in the use of these standards. My parents have agreed to share our histories and genomes as an example to accelerate adoption of these standards. More to come soon!

A Milestone for Personal Health Records

On November 12, Acting CMS administrator Kerry Weems and HHS Secretary Michael Leavitt made an announcement that has not been widely covered in the press, yet has deep significance.

The Center for Medicare and Medicaid Services (CMS) has embraced personal health records and will enable Medicare members in Arizona and Utah to access their own data from CMS databases via Google Health , NoMoreClipBoard , HealthTrio , and PassportMD . CMS pushes the data to the beneficiary's personal health record account upon the request of the beneficiary, rather than giving PHR vendors direct access to CMS databases.

Having worked with CMS for many years on transactions for treament/payment/operations and having worked with the CMS contracted Research Data Assistance Center (ResDac) for research datasets, I can say that CMS is very conservative about sharing its data and embracing new technologies.

The fact that CMS has linked the Medicare database to Google Health and other PHRs implies that CMS has embraced Healthcare 2.0 approaches to infrastructure and has validated the importance of personal health records. It also signifies that CMS has accepted secure transmission of healthcare data over the internet using HTTPS as secure enough. In the past, it's been challenging to transmit data from/to CMS via the public internet.

CMS, the funder of more than half of the healthcare in the US, generally drives adoption and change through reimbursement policy. In this case, by offering patients access to their own claims data, CMS will create patient expectations that will motivate the private payer community to do the same.

Linking Medicare over the internet to PHRs may be one of Secretary Leavitt's greatest accomplishments. Let's hope the Arizona and Utah pilots are successful.