The Health Information Exchange Hearing

Today in Washington, the Standards and Policy Committees met in joint session to take testimony from expert stakeholders about health information exchange.

Farzad Mostashari, National Coordinator, introduced the day, noting that we've made great strides since the founding of HL7 in 1987 and the creation of ONC in 2004, but there is more work to do.  The includes early successes, a discussion of barriers/challenges, the elements needed to ensure trust, and the role of consumers.   The hope is that the foundation laid by Meaningful Use stage 2 will enable reduced costs (and reduced vendor pricing for interfaces), increased benefit, and privacy protections that have not been historically possible.

Micky Tripathi, CEO of the Massachusetts eHealth Collaborative provided an overview of the  current landscape in his presentation, The State of Health Information Exchange.  He described HIE 1.0 as the noun and HIE 2.0 as the verb with many models  (in order of increasing level of external coordination needed):

Point to patient
Point to point
Vendor specific
Transaction specific national level
Enterprise level HIE organizations
State and regional collaboratives
National level collaborative

Next, I moderated a panel, Health Information Exchange Enabling Healthcare Transformation, describing the technology and policies which have enabled successful health information exchanges.   The major lesson learned was workflow and business value are even more important enablers than technology.

We heard from
Michael Lee, Atrius Health
Sandy Seltzer, Camden Coalition
Keith Hepp, HealthBridge
John Blair, Hudson Valley Initiative
Karen VanWagner, Plus ACO/North Texas Specialty Physicians

Next Paul Tang moderated a panel, Technical and Business Barriers and Opportunities, which concluded that meaningful use stage 2 significant reduced technology and policy barriers by constraining optionality in standards and aligning incentives to exchange data.  We heard from

John Halamka, Beth Israel Deaconess Medical Center
David Horrocks, CRISP
Bill Spooner, Sharp
Tone Southerland, Greenway

After lunch, I moderated a panel, Governance Barriers and Opportunities, which focused on governance and trust fabric efforts necessary to ensure authentication and authorization of participants in health information exchange.   We heard from

David Kibbe, Direct Trust
Christopher Alban, Epic
Sid Thornton, Care Connectivity Consortium
Michael Matthews, Healtheway

Finally, Paul Tang moderated a panel, Consumer-Mediated Exchange, which emphasized the importance of provider-patient as well as provider-provider health information exchange using the Direct standards.   We heard from

Jeff Donnell, NoMoreClipboard
Mary Anne Sterling, Sterling Health
Neal Patterson, Cerner
Alan Blaustein, Care Planners

Paul Tang summarized the day and we agreed that the robust discussion will inform the work plans of the policy and standards committees as we all work hard to increase the volume and usefulness of health information exchange throughout the country.

Building Unity Farm - Creating an Animal Community

On our journey to become small scale farmers, we've visited many New England farms, orchards, and CSAs.   We've had 3 major lessons learned:

*Create the infrastructure you need before adding animals to the property
*Do not acquire more animals than you can manage
*Ensure the animals are compatible with each other and that you'll have a healthy community with symbiotic relationships

Infrastructure - many farms we visited had inadequate or temporary fencing, created or patched after an animal escaped or was injured trying.    Often there was little advance thought to manure management, workflow, and access for humans and machines.    In laying out our fences we placed gates on every edge and sized them based on the need for animal and equipment flow patterns.   The inputs and outputs of food, water, and manure formed the requirements for design before anything was built.

Number of animals - Today we have 50 animals, which enables us to give personal attention to every one.   Each night we examine all our chickens and guinea fowl to ensure they are healthy.   Every day the Great Pyrenees get two runs around the forest and orchard.    For alpacas and llamas,  we trim their toenails, clean their ears, examine their skin, weigh, and measure their body scores every month. This month we found a small ear abscess on one of the alpacas and performed an incision and drainage to accelerate healing.   My wife and I, plus the monthly help of the original alpaca breeder,  constitute enough resources to give personalized attention to every animal.   Many farms we visited had sick, underweight, and overcrowded animals that exceeded the capacity of the farmers to care for them.

Community - we chose our animals carefully.   Our guard llama lived her entire life with alpacas and was familiar with guarding duties.   Our alpaca spent their entire lives together as a herd.   Our chickens were hatched together on the same day.   The guinea fowl were all part of the same flock.    The dogs have bloodlines from the same breeder and grew up together.    We were very careful to introduce the llama to the alpaca so that each had enough space to acclimate to each other.   We introduced the dogs one at a time to the alpaca, and separated the dogs from each other until they established a relationship through a fence.   The chickens and the guineas shared a two room coop for months until we opened the door and enabled them to interact.  They now roost with each other.

The end result has been a harmonious community at Unity Farm.  The photo above shows Shiro, our 83 pound Pyrenees puppy, sleeping with Stanley, our 106 pound alpaca "puppy".  The dogs and alpacas curl up together for warmth on cold winter days like today, when it's 6 degrees in the barn.

We're very satisfied with our community of animals and will be very judicious in adding more.   This spring and summer we are removing an old hot tub on the property and replacing it with a koi pond, engineered to stay partially unfrozen during the winter.   We may consider adding indian runner ducks 
once we have a small pond for them near the barnyard.

We will not add sheep or goats because they will bring unique diseases and parasites to the herd of llamas and alpacas.    Every expert we've spoken with has suggested that public health/population health management of barnyards is best when species diversity is limited.

That's our animal community.    Thus far, the citizens of Unity farm are thriving in it.

Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules

On January 17, HHS released the Final Rule entitled: Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules

It's 563 pages long and contains 7 themes:

Covered entities must ensure that they obtain satisfactory assurances required by the rules from their business associates, and business associates must do the same with regard to subcontractors, no matter how far 'down the chain' the information flow

Increases penalties to $1.5 million per year

Tightens limitations on the use of patient records for marketing

Prohibits the sale of patient information without a patient's consent.

Provides patients with a right to insist that a provider not share their patient-care records with their insurance company if that care is paid for by the patient out-of-pocket in full.

Requires entities with patient record breaches to assess the likelihood that the information could be accessed in determining whether they must notify individuals of the breach.

Adds patient-safety organizations, health information exchange organizations and e-prescribing gateways to a specific list of HIPAA business associates liable under the rule. It also includes as business associates certain vendors of personal health records, those that provide a PHR to patients “on behalf of a covered entity,” but excludes other PHR providers, such as those working on behalf of consumers.

Much of the final rule is a restatement of requirements in ARRA/HITECH and GINA.   Generally the recommendations are very reasonable.   One challenging aspect of the final rule is the provision that provides patients with a right to insist that a provider not share their patient-care records with their insurance company if that care is paid for by the patient out-of-pocket in full.   At present this will be technically challenging to implement.   For example, if a patient pays for their outpatient treatment in cash and an e-prescription is generated, how do we flag the prescription to ensure it does not flow into a Pharmacy Benefit Management database?   If an inpatient hospitalization is paid in cash, how do we prevent a nurse case manager working for a payer from seeing any data related to that care episode?  Such data segmentation needs metadata around each data element so that data flows can be selectively restricted.   A great goal but definitely a work in process for which no products nor standards exist.

In the workplan for FY13 that I presented at the January HIT Standards Committee meeting, I highlighted the need for our workgroups to study standards supporting data segmentation for privacy, so hopefully we'll close this gap in the next year and have products in the marketplace which support such controls by 2014.

I know that many groups are hard at work analyzing the new rule, so I look forward to their wisdom.   The rule's 563 pages are rich with detail.

One Degree of Separation

I have long believed that there is one degree of separation in the world of healthcare IT.   Everyone knows everyone and we're all connected in often amazing ways.   Here's one such story.

When I was in college, I looked at the daunting cost of Stanford tuition, room, board, and living expenses (almost $15,000 per year!) and thought that I should leverage the impending microcomputer revolution by writing tax computation software for early CP/M-based machines.   I did that from my dorm room (Kathy, my wife to be, wrote the manual).  As our "company" grew, I knew that I wanted to expand to other platforms, including mini-computers.   Only one problem - they were COBOL-based and I was not an expert in that language.  

I spoke with a few contacts in the accounting software industry and they referred me to a high school student in Davenport, Iowa who was writing financial applications as part of saving for college.

I contacted him and we agreed to a partnership.   My company would do sales, marketing, and support.   He would write the tax software for COBOL users.

Since I was born in Des Moines, Iowa and still had family in Iowa, I agreed to meet AR Weiler during one of my trips to visit my grandparents.   I recall meeting his parents and telling that I hoped our partnership would at least fund his college education.

The COBOL-based software sold a modest number of copies and was displaced by the emerging demand for MSDOS 1.0 applications when IBM introduced the PC and XT.   I dutifully sent checks to AR Weiler whenever COBOL software was sold.

I lost touch with AR but understood that he went to Harvard University and majored in computer science, presuming using the funds from his COBOL programming to partially fund his education.

After college he took a job with Oracle, working on several initiatives related to Japan.

Fast forward to 2013, it's 30+ years since I met AR in Davenport.

Last week, in response to my post about Consumer Electronics for Home Healthcare one of my colleagues forwarded information about an exciting new company, Healthsense,  that specializes in consumer sensors for home health applications including

Automatic fall detection
Emergency call pendant
Custom monitors designed for wandering, falls, or missed medication
Custom voice reminders for staff and residents
Activities of Daily Living (ADL) reports to track health and wellness indicators
Vital sign devices

I wanted to explore the company's senior management team.

Imagine my surprise when I found that the CEO was none other than AR Weiler.   His career since we worked together has included Emdeon, Ingenix, and Virgin Group.

It's truly a small world.

None of us can know exactly what will happen when we make choices and form relationships.  A partnership formed 30 years ago between a college student and a high school student somehow led to a convergence in healthcare IT.

Fate is a wonderful enabler.  Who knows what collaboration the future may bring.    Another important reason to continuously help those around you, since the person you empower today may be the person you depend on tomorrow.

Building Unity Farm - Managing Willful Dogs

Great Pyrenees are a strong willed dog breed.   Historically Basque shepherds left their dogs alone to guard flocks.   The dogs had to make decisions for themselves, sound the alarm to scare away predators, and defend their own food.   This tradition makes them very independent thinkers, frequent barkers, and are rather protective about their food.

The Great Pyrenees that guard our Alpaca sleep much of the day, patrol the paddocks at night, and bark at the threatening sounds they hear, which include marauding raccoons, howling coyotes, deer crashing through brush, teenagers having a distant party, and the wind blowing through the willows.  

They are wonderful dogs, amazing companions to their charges, and very friendly to humans.    I run several miles with them a day, always keeping them on a lead built for two, since they are very willful and are likely to run for miles to keep their territory safe.

Just as raising children can require patience and agility, so does raising dogs.

Just as being an IT leader requires equanimity and consensus building, so does living with Great Pyrenees.  In my career as a CIO. I've learned that raising your voice, diminishes you and accomplishes nothing.  The same holds true with Great Pyrenees

If it's 3am and the dogs are doing their job - barking at sounds that seem threatening.  What do you do?  Yell at them to stop barking?   Lock them in the barn?  Lift them by the scruff of the neck and tell them they are bad dogs?

None of these approaches work.   Yelling is the human equivalent of barking and the dogs think you are raising an alarm.     Willful dogs do not understand punishment or force.

Instead, I use an approach that recognizes them for doing a good job and puts them at ease.    I put on my boots and head out to the paddocks.    I greet the dogs and thank them for raising an alarm.   I walk the fence lines, checking for threats and watch the behavior of the llama and alpacas.    If the threat seems to have passed, I tell the dogs that they are good dogs, doing their job.   I thank them.   I pet them by rubbing their temples.     I nuzzle their heads underneath my neck and tell them the all is well.

Once they understand that I am satisfied with their guarding and have now taken responsibility for the threat they identified, they stop barking and return to their patrols.

This approach of love, reassurance, positive reinforcement, gentle touching, and communication works just about 100% of the time.

Although some believe that management by intimidation achieves results expediently, it does not build loyalty and is not sustainable.     For 15 years I've managed by creating trust and loyalty.  The same approach works with willful dogs.

The January HIT Standards Committee meeting

The January HIT Standards Committee began with passionate remarks from Farzad Mostashari, emphasizing the need to maintain momentum as the country evolves from Stage 1 to Stage 2, from data capture and sharing to advanced clinical processes.   In some ways, the press and policymakers have attention deficit disorder, asking for the improved outcomes of Stage 3 before the foundation of Stage 1 and 2 is widely implemented.    All members of the Standards Committee are committed to continuous forward progress.

Jodi Daniel presented the HIT Policy Committee preliminary 2013 work plan which includes specific tasks in 5 areas

*Measuring clinical quality
*Health Information Exchange
*Safety
*Privacy
*Managing and using patient data
*Accountable Care

Based on this plan, the Policy Committee's  request for comments, input from HIT Standards Committee members, ONC's  Meaningful Use Stage 3 standards gap analysis, and feedback from workgroup chairs, we assembled a draft of priority areas which will be used to create a standards work plan for FY13 and beyond 

There are five general categories of work, each with 5 themes

* Quality and Safety
* Health information Exchange
* Consumer
* ACO/Population Health/Care Management
* Privacy/Security

Doug Fridsma mapped the 25 elements on the Standards Committee priority themes to existing ONC efforts.   As a next step, Doug will turn the priorities into a structured work plan, balancing the need for new standards, the timeframes in which their are needed and the amount of work required given the existing maturity of the standards.   This work plan will be presented at the February meeting.

Next, we reviewed the deliberations of the Standards Committee workgroups which reviewed the Policy Committee's request for comment.    Although detailed comments were provided on every line item, the workgroup chairs presented a high level overview of their recommendations and we discussed their recommendations.   I will present the responses to the policy committee on February 6.

Doug Fridsma and Jodi Daniel offered ONC updates including the status of S&I framework projects some of which are transitioning to public private partnerships.

Finally, Becky Kush from CDISC presented an overview of the Clinical Data Interchange Standards Consortium (CDISC) curated standards.

The day's discussion was a confluence of work priorities some which were reactive to policy committee requests and some of which were proactive to enable future policy goals.

I look forward to the February meeting at which we'll reaffirm the phasing of our FY13 projects, finishing works in progress and taking on new priority efforts.

Consumer Electronics for Home Care

As part of the "sandwich generation"  I serve as healthcare navigator to my parents and life coach to my daughter.  My parents live in Southern California, 4000 miles away from Boston.

I call them each day to ensure they are doing well, exercising, and eating right.   It would be great if an "automated dashboard" or "alerts/reminders" assisted my efforts to support them.

Recently, Hiawatha Bray at the Boston Globe summarized the Consumer Electronics Show in Las Vegas, highlighting the kind of assisted living/healthcare devices we can expect in the home soon.

My parents use ADT for home security, so why not use that infrastructure to report on their movements, their use of appliances, and the contents of their refrigerator.

I already have a proxy for this kind of home care monitoring.    One of my avocations is meteorology and I provide the weather monitoring services for my town (Sherborn) and my parents town (Palos Verdes).   Part of that telemetry includes the interior temperature of the building housing the equipment.    Since it's network connected, I can watch my parents home to make sure it is warm in the winter and cool in the summer.

I've found this environmental monitoring to be a very helpful indicator of their well being.

I look forward to the day when home sensors offer a full report that our parents got out of bed, ate breakfast, used exercise equipment, watched television, and generally moved throughout the house in their usual pattern.

Some may consider this kind of monitoring to be an invasion of privacy, but for increasing numbers of older Americans, such tools can help them stay in their own homes longer and offer peace of mind to the family members who support them.