Life as a Healthcare CIO

On Turning 50

2012-05-21T03:00:00.000-07:00

On Wednesday I turn 50.

Ive been a son for 50 years, a husband for 28 years, and a father for 19 years.

I've been a doctor for 20 years, a CIO for 15 years, and a blogger for 5 years.

What have I learned in all my roles over the half a century I've been on the planet?

I've started to understand what really matters.

Is it fame or fortune? No, although it is important to have an income that matches your lifestyle burn rate in a sustainable way.

Is it your work life and the trajectory of your career? No, but it is important to spend your day doing something that is intellectually challenging and offers you the potential for personal growth.

Is it the awards and accolades you accumulate through strength of will and persistence against adversity? No, but it is important to feel recognized for your successes.

In my multiple roles living, working, and playing over 50 years, I've spent time with Presidents, Nobel Laureates, and tycoons. Some have risen and some have fallen. I've watched my mentors in life triumph and I've watched them fail.

So after 50 years what really matters?

I've said that the difference between an expert and novice is not the detail they notice, but what they choose to ignore. For example, when I do a toxicology consult, I focus less on the exact subspecies of mushroom the patient has ingested, and more on ensuring it is not one of the few that kill humans.

I ignore the day to day frustrations, bureaucratic hassles, and conflicts in my work life. People leave, projects end, and no one remembers the details of last year's urgencies.

What really matters is happiness at home.

Jobs may change but family is forever. The life events surrounding your parents, your spouse, and your children are the palette that color the stages of life.

If your relationships with those who are important to you are positive and supportive, you will feel a sense of optimism and life energy that empowers all the other aspects of your life.

You'll be able to share all your life joys, be supported through your sorrows, and look forward to the sanctuary that is your home life.

When my mentors have stumbled in the workplace, they've generally been forgiven. However, when they've had challenges in their home lives (affairs, violence, or public conflict), they've been judged harshly.

As I've approached 50, I've worked hard to build a haven at home. I married the first person I dated in college and we've created homes together since 1980. Our relationship has always been based on loyalty. I call my parents every week and we have an open loving relationship. My 19 year daughter still believes her parents are reasonable people. Tonight and for much of the summer, our household will be multi-generational since my daughter will be home from college, and my father in law recently moved in with us. My wife is cancer free and our new farm is bursting with healthy young animals, fresh hay in our meadow, and the spring vegetables we planted.

Yes, I will be engaged and passionate in my work life as I begin my 50th year, but my reputation, integrity, and sense of equanimity derive from my happiness at home.

Happy Birthday to my colleagues Micky Tripathi and Meg Aranow - all three of us were born on the same day and we share the very similar values of what matters and what does not as we age another year.

Cool Technology of the Week

2012-05-18T03:00:00.002-07:00

I've often been asked how Emergency Medical Services (EMS) run sheets can be automatically integrated to emergency department information systems so that the transition of care between the ambulance and the hospital is seamless.

It's been challenging to do in the past because data was not available electronically from EMS and we lacked an architecture to transmit the information.

In Boston, both problems have been solved.

BIDMC now receives electronic run sheets from each Boston EMS ambulance run, in near real time.

Boston EMS uses the SafetyPad mobile application to capture patient history electronically during the ambulance run.

The SafetyPAD Application Programming Interface exposes a targeted subset of features of the SafetyPAD platform to developers.

Specifically, the SafetyPAD API accepts GET or POST requests to the primary API endpoint URL and returns one or more results in XML format. In general, developers send requests via GET when retrieving information and via POST when adding, removing or updating information.

As patients arrive at BIDMC, we poll the SafetyPad servers, retrieve the XML and incorporate the record into our Emergency Department Information System, matching patient demographics to insert the data automatically. A screen shot is above.

Automated mobile EMS data capture followed by incorporating to hospital information systems using XML and a RESTful API. That's cool!

Our Cancer Journey Week 22

2012-05-17T03:00:00.002-07:00

Kathy's Surgical Pathology report came back at 1pm today. Here's her Oncologist's summary:

"Your path shows no tumor whatsoever. The pathologists put through additional sections beyond the usual and still found nothing."

We're overjoyed.

Here's how we got to this point.

When Kathy was first diagnosed with breast cancer, titanium clips were inserted at the margins of the tumor to help localize the area as the tumor changed.

After 4 doses of cytoxan/adriamycin and 5 doses of taxol, the tumor disappeared - an MRI showed no evidence of disease.

Per my blog last week, Kathy and her breast surgeon made a decision to move forward with a lumpectomy. Here are the details from the surgeon's clinical note

"Impression: Carcinoma of the left breast, s/p neoadjuvant chemotherapy with a complete response based upon clinical examination and recent breast MRI.

Options for management were discussed which includes an attempt at breast conserving surgery. This would be a wire localized left partial mastectomy using two wires to bracket the cancer at presentation. If adequate margins are attainable, she would then receive adjuvant radiation therapy followed by hormonal therapy. Alternatively, mastectomy with and without reconstruction was discussed.

Ms Halamka and I have decided to proceed with an attempt at breast conserving surgery. The procedure was discussed in detail, including the wire localization. The pre-, peri-, and post operative care was discussed. Consent form was signed. This has been scheduled for 5/11/12."

On May 11, I drove Kathy to BIDMC at 6am and we checked into surgery at 7am. She was taken to interventional radiology for placement of wires aligned to the titanium clips to guide hemisection of the breast. Here's the procedure note:

"Using standard aseptic technique and 4 cc of 1% lidocaine for local anesthesia two needles and subsequently two wires were advanced into the patient's breast. Satisfactory positioning of the wire was confirmed on orthogonal views with the percutaneous clips at the respective wire stiffeners."

Kathy tolerated the procedure well, and was bought to the Operating Room at 9:30am. She was given Monitored Anesthesia Care (MAC) - breathing on her own but deeply relaxed via doses of Propofol, Versed and Fentanyl. Her surgeon cut out the tissue between the wires and sent that to Pathology. She then cut a wider margin and sent that to Pathology. Here's the procedure details from our OR system

Procedure Detail: WIRE LOCALIZED LEFT BREAST PARTIAL MASTECTOMY WITH 2 BRACKET WIRES
Incision Time: 09:39 Cosmetic? N
Close Time: 10:49
Specimens Taken? Y

Specimens:
149845-1 Mammo.
LEFT LOWER INNER QUADRANT PARTIAL MASTECTOMY
Anatomical ID: Left
Markers: SHORT STITCH-SUPERIOR;LONG STITCH-LATERAL
Disposition: Fresh
Comments: Specimen out @1000.

149845-2 Permanent
RADIAL RE EXCISION LEFT BREAST
Anatomical ID: Left
Markers: SHORT STITCH-SUPERIOR;LONG STITCH-LATERAL
Disposition: Fresh
Comments: Specimen out @1022.

She was taken to the recovery room at 11:00am and I met her there. She did very well and had no post operative pain.

Over the past week, she's done well, with no swelling, redness, or pain at the incision site. She's had a small amount of clear drainage but no signs of infection.

So, she's done with chemotherapy and surgery. Her Pathology report was perfect, showing no evidence of cancer. Tomorrow we'll meet with her care team to prepare for the next step - radiation oncology.

The State of e-Prescribing in the US

2012-05-16T03:00:00.001-07:00

Tomorrow Surescripts issues its annual report about the state of e-prescribing in the US.

I think you'll find the summary quite valuable as it illustrates the impact of Meaningful Use Stage 1 on providers and the industry. Here are the high points from the report:

Meaningful Use
*By the end of 2011, 58% of office-based physicians in the United States had adopted electronic prescribing – vs. less than 10% a little more than 3 years prior.
*Research suggests that the federal incentives for meaningful use of e-prescribing are well founded.
*As physicians gain more experience with e-prescribing, the data shows that they use it more.
*Prescribers who began e-prescribing in 2008 showed a 4X increase in e-prescriptions sent between 2008-2011.
*In the case of prescribers who adopted e-prescribing in 2008, the majority have met the standard for the Stage 1 Meaningful Use e-prescribing measure – over a third have already met the proposed 2014 Edition Meaningful Use measure.

Physician Adoption
*Pprimary care docs have achieved high levels of adoption.
-Internists (81%)
-Family practitioners (75%)
*Eleven different specialties have achieved adoption rates of 60 percent or more.
-Endocrinologists (78%)
-Cardiologists (76%)
-Gastroenterologists (69%)
-Urologists (68%)
-Opthalmologists (67%)
*Contradicting many survey-based studies on health IT adoption, the report shows e-prescribing adoption is highest among smaller practices:
-6 to 10 physicians (55%)
-2 to 5 physicians (53%).
*In 2011, The most significant growth in physician adoption of e-prescribing occurred among and solo practitioners – from 31% in 2010 to 46% in 2011.

Overall E-Prescribing Use
*The number of electronic prescriptions in 2011 grew to 570 million, up from 326 million e-prescriptions in 2010.
* By the end of 2011, an estimated 36% of prescriptions dispensed were routed electronically, up from 22% at the end of 2010.
*Electronic responses for prescription benefit information grew 87% in 2011.
*Electronic medication history deliveries increased 72% in 2011.
*Approximately 31% of patient visits generated an electronically delivered medication history in 2011.

Medication Adherence
*In 2011, Surescripts partnered with PBMs and retail pharmacies to compare the effectiveness of e-prescriptions and paper prescriptions on first fill medication adherence.
*The data showed a consistent 10% increase in patient first fill medication adherence (i.e., new prescriptions that were picked up by the patient) among physicians who adopted e-prescribing technology.
*The analysis suggests that the increase in first fill medication adherence combined with other e-prescribing benefits could, over the next 10 years, lead to between $140 billion and $240 billion in health care cost savings and improved health outcomes.

Thanks to Surescripts for doing this research. It's clear that the trajectory for e-prescribing is very positive.

The NwHIN Governance RFI

2012-05-15T03:00:00.000-07:00

Last week ONC released the Nationwide Health Information Network: Conditions for Trusted Exchange Request for Information that will be published in the Federal Register today

Steve Posnack, Director of the Federal Policy Division, ONC presented this webinar using these slides

The work is part of the HITECH mandate that requires the National Coordinator to establish a governance mechanism for the nationwide health information network.

Key concepts in the presentation include a few new acronyms that we'll all be using over the next few years, so it's a good idea to memorize them now.

CTE - Conditions for Trusted healthcare information Exchange, the “rules of the road” for participation

NVE - a nationwide health information Network Validated Entity, the organizations that adhere to operational and financial practice preconditions for participation in trusted exchange.

Of interest, the proposed conditions for trusted exchange include

Safeguards CTEs
[S-1]: An NVE must comply with sections 164.308, 164.310, 164.312, and 164.316 of title 45 of the Code of Federal Regulations as if it were a covered entity, and must treat all implementation specifications included within sections 164.308, 164.310, and 164.312 as “required.”
[S-2]: An NVE must only facilitate electronic health information exchange for parties it has authenticated and authorized, either directly or indirectly.
[S-3]: An NVE must ensure that individuals are provided with a meaningful choice regarding whether their IIHI may be exchanged by the NVE.
[S-4]: An NVE must only exchange encrypted IIHI.
[S-5]: An NVE must make publicly available a notice of its data practices describing why IIHI is collected, how it is used, and to whom and for what reason it is disclosed.
[S-6]: An NVE must not use or disclose de-identified health information to which it has access for any commercial purpose.
[S-7]: An NVE must operate its services with high availability.
[S-8]: If an NVE assembles or aggregates health information that results in a unique set of IIHI, then it must provide individuals with electronic access to their unique set of IIHI.
[S-9]: If an NVE assembles or aggregates health information which results in a unique set of IIHI, then it must provide individuals with the right to request a correction and/or annotation to this unique set of IIHI.
[S-10]: An NVE must have the means to verify that a provider requesting an individual’s health information through a query and response model has or is in the process of establishing a treatment relationship with that individual.

Interoperability
[I-1]: An NVE must be able to facilitate secure electronic health information exchange in two circumstances: 1) when the sender and receiver are known; and 2) when the exchange occurs at the patient’s direction.
[I-2]: An NVE must follow required standards for establishing and discovering digital certificates.
[I-3]: An NVE must have the ability to verify and match the subject of a message, including the ability to locate a potential source of available information for a specific subject.

Business Practices
[BP-1]: An NVE must send and receive any planned electronic exchange message from another NVE without imposing financial preconditions on any other NVE.
[BP-2]: An NVE must provide open access to the directory services it provides to enable planned electronic exchange.
[BP-3]: An NVE must report on users and transaction volume for validated services.

Reflecting on our Massachusetts Health Information Exchange strategic and operational plan, the stakeholders of the Commonwealth have outlined policies and technologies to address each one of these conditions. It's my hope that Massachusetts will be an early adopter of this framework and will be one of the first NVE's to be certified.

As I've said in my lectures on the topic, our generation will be the one that solves the trust fabric problem, so that our grandchildren will grow up in a connected healthcare system. The NWHIN Governance RFI provides the policies necessary to create and maintain the network of networks that will result in nationwide exchange.

Gamification

2012-05-14T03:00:00.001-07:00

Recently, I've met with several internet startups, web thought leaders, and venture capitalists.

There's one word that's come up in every conversation and it's not Plastics . It's Gamification

Gamification, described by Wikipedia is applying gaming principles to non-gaming applications and processes,

"in order to encourage people to adopt them, or to influence how they are used. Gamification works by making technology more engaging, by encouraging users to engage in desired behaviors, by showing a path to mastery and autonomy, by helping to solve problems and not being a distraction, and by taking advantage of humans' psychological predisposition to engage in gaming."

Whenever technologists create a cool new application, they often focus on the innovation necessary to solve a hard engineering problem rather than the user experience or how to ensure the ongoing use of the software.

Many internet companies have tried and failed (such as Google Health) to create highly usable healthcare sites, but failed to engage customers over the long term.

Although the biology behind gamification is controversial, the claim is that the human brain inherently enjoys problem solving and the dopamine-mediated emotional rewards that come with it. Sticky platforms like Facebook implement many gamification features to keep users coming back. Group competitions, customer loyalty programs, and goal achievement are all examples of gamification strategies.

We're in the midst of a redesign of the BIDMC Personal Health Record, Patientsite. Not only do we want to make it easier to use and more visually appealing, we want to ensure it adds value and becomes a destination that patients want to revisit. We'll certainly keep Gamification principles in mind.

So next time you're faced with a software redesign, think about its use more than its engineering. Replace Plastics with Gamification in your lexicon. There's a great future in it.

Cool Technology of the Week

2012-05-11T03:00:00.002-07:00

I've written many times about the Bring Your Own Device movement (BYOD) and the need for increasing security controls.

For years, we've controlled device settings on Blackberry devices with the Blackberry Enterprise Server (BES). We force passwords, encryption, and device memory wipes for ten failed passwords so that every user has enterprise enforced security

With iPhones and Android devices it's harder to control settings and behavior on personal equipment.

We think the best we can do within the limitations of present server-side technology is to enforce the use of passwords on all devices using Active Sync, require a timeout of 10 minutes, and eliminate the use of the most simple passwords (1234, 1111 etc). Microsoft Exchange/Active Sync can query the device for the settings currently in place and only synchronize email if the device adheres to enterprise security policies.

We'll eliminate support for POP and IMAP protocols because these cannot be used to inspect and enforce desirable device settings.

We've debated the use of settings that automatically wipe the device for 10 failed password attempts, as we do with Blackberry. However, given that we cannot selectively purge corporate verses personal data, we'll likely avoid that setting for now.

BYOD management is a journey. Server side tools that inspect personal devices and only allow synchronization of corporate data such as email when settings are consistent with policies seem like a cool solution.

In the future, we may add client software (Mobile Device Management) to each device to provide more control over encryption on Android devices and permit selective memory wiping of corporate data.

I welcome comments on what others have done. BYOD is here to stay. Compliance and IT departments need to collaborate on a set of policies and technologies that will meet the needs of regulatory requirements while maintaining service capabilities and user productivity.

Our Cancer Journey Week 21

2012-05-10T03:00:00.001-07:00

Kathy heads to surgery tomorrow at 7am. She'll be NPO (nothing by mouth) after midnight. She'll wake at 5am, shower with Hibiclens (a antibacterial prep), and I'll drive her to surgical check in. Prior to surgery, the radiology department will insert a wire adjacent to the titanium markers that were placed in her tumor at first diagnosis. Her surgeon will use this wire to guide the lumpectomy.

Her left breast will become smaller than her right. She jokes that her career in exotic dancing will come to an end.

The operating room will call me at the end of her procedure and I'll pick her up. Since she'll not have had general anesthesia, we're presuming she'll feel good enough for a bit of an extended ride home. The last of our chickens arrives on Friday (Buff Orpington's) and we'll pick them up as we drive back to our new farm.

We'll anxiously await the results of pathology. If the margins on the lumpectomy tissue are clear, Kathy will start Radiation Therapy 1-2 months after surgery, likely late June or early July.

By Labor Day, if all goes well, this phase of our cancer journey will end, although our continued vigilance for reoccurrence will be lifelong.

Her hair is beginning to regrow and she's progressed from peach fuzz to GI Jane. Her nails are becoming less brittle and losing their black pallor. Her body is beginning to recover.

2012 has been a year of learning. We've learned how to deal with the unknowns of cancer care. We've learned the value of personal health records. We've learned how to buy and sell a house in the middle of chemotherapy. We've learned how to keep our sanity and patience in the face of adversity. Although we would have preferred not to learn some of these lessons, we're stronger for it.

Onward to the next step in the morning.

The American Hospital Association Letter

2012-05-09T03:00:00.000-07:00

On April 30, the American Hospital Association issued a 68 page letter to CMS outlining their response to the Meaningful Use NPRM.

There are elements of the letter I can appreciate - implementing electronic medication administration records and bedside medication verification can be expensive for a hospital that has not yet begun the process, especially the 1300 critical access hospitals in the US.

Implementing some aspects of interoperability require using technologies that are very new. Vendor products will need to be enhanced to support efficient health information exchange workflows.

However, as David Blumenthal said with stage 1 of Meaningful Use, we have to set the pace of the policy "escalator" so that it gets us to our destination with reasonable speed but not so fast that passengers fall off. In my view, the AHA sets the speed too slowwith its patient and family engagement language:

"Patient Portal. CMS proposes as a new objective: provide patients the ability to view online, download, and transmit information about a hospital admission. The AHA recommends that this objective be removed for two reasons: (1) CMS does not have regulatory authority over patients’ access to their health records; and (2) the objective is not feasible as specified."

Also

"Remove the measure on patient use of the portal to both minimize measurement burden and eliminate a provision that makes provider performance contingent on actions of others."

Patient and Family engagement is an area that needs to be pushed aggressively if progress is to be made. The fears and myths about the burden and expense of implementing it are unfounded in my experience. Unless we ramp up the policy "escalator" in the patient/family engagement area, vendors will not innovate and providers will not overcome their inertia.

What do I mean?

When the telephone was introduced, there was fear in the medical community that it would disrupt doctor patient relationships. History has shown that It did not.

When secure email and patient portals were introduced, clinicians believed the burden of communications would escalate. It did not.

When BIDMC began sharing notes with patients there was fear of litigation, misunderstanding, and level of effort to support patient questions. Nothing bad happened.

BIDMC has had a patient portal in place since 1999 that does everything required in the Meaningful Use 2014 edition NPRM language. 60,000 patients per month have used it for over a decade. They can view their records in real time, send secure email, make appointments, refill prescriptions, request referrals, and access numerous patient specific educational materials. 20% of our patients send secure email and look up their records - double the threshold recommended by the NPRM.

The technology is simple and the impact on the hospital (cost, workflow, burden) has been insignificant.

As the spouse of a cancer patient, I can describe firsthand the critical importance of PHRs. Kathy has navigated her entire cancer care experience by using the BIDMC patient portal to track her care plan, her treatment progress, and her diagnostic test results. She's securely communicated with her clinicians and accessed patient educational materials. True, we built this system ourselves in 1999 with a budget of less than $50,000, but today's commercial products such as Epic's MyChart, and eClinicalWorks Patient Portal offer similar functionality.

I'm passionate about patient and family engagement.

I hope that the public response to their letter will encourage the AHA to reconsider their patient engagement recommendations and ensure they carefully consider the patient record access provisions in upcoming recommendations coming from the Office of Civil Rights. I welcome the opportunity to share the experiences of early PHR adopters with AHA membership.

Working together as an industry, we can manage the concerns voiced by AHA membership. I encourage us to push the limits of the "escalator" on patient and family engagement policies/technologies. My wife's treatment and patients everywhere depend on it.

Metadata in an HIE

2012-05-08T03:00:00.002-07:00

Last week, the Technology Workgroup of the Massachusetts State HIE Advisory Committee was asked to address an interesting policy and technology question.

When a payload of data (a clinical summary, a public health transaction, a lab result) is sent from provider to provider, what data should be included in the electronic envelope used in the sending process?

Massachusetts uses the Direct protocol so the payload is encrypted during transport. The Healthcare Information Services Provider (HISP) cannot read the contents of the message. All routing information i.e. who is the sender, who is the receiver, when was it sent, are there special privacy restrictions etc. must be placed as metadata in an electronic envelope around the payload.

Most metadata is not very controversial. Beth Israel Deaconess sent a payload to Dr. Smith on May 9th at 8:00am with patient consent.

However, for auditing purposes, it could be important to send patient identifiers in the envelope. If the HIE is asked a question like "we sent 10 payloads about John Halamka, can you tell us the time/date and location of delivery?" For medical/legal, data integrity, and service level guarantees, patient identifiers in the audit trail make HIE operations easier.

However, there are downsides. The audit trail becomes protected healthcare information. Operators of the HIE now have access to person identified information.

How could this be a problematic?

What if the audit trail is itself is breached? The HIE must follow HITECH reporting requirements. The Direct Protocol was designed so that transport intermediaries minimize risk of breach by sending unidentified payloads.

What if someone asks the HIE to provide the date/delivery times of a patient's payloads sent from a substance abuse or psychiatric treatment facility? The public is likely to have concerns that HIE staff (especially state government operators) have access to audit trails which contains such sensitive details.

Furthermore, applications that will perform novel routing and linking may need more than just limited amounts of person identified metadata in the envelope to add functionality. Clinicians on the Tech Workgroup noted that data elements such as visit type (inpatient or outpatient), message purpose (discharge summary, medication summary, admission notification), author of the message etc. are needed to automate advanced routing functions. Thus, the recipient organization will likely open the payload after it is securely received to access additional information for processing.

What did we decide?

We elected to remove all human readable patient identifiers from the audit trail, instead using hashes of such data elements as name and date of birth for auditing purposes.

How will that work?

Suppose my PCP wants to send a clinical summary to a specialist as part of a referral.

We agreed to use a secure hashing algorithm (such as salted SHA-2) to anonymize identifiers.

The hash of John becomes AY#!

The hash of Halamka becomes *iUOP

The hash of my birthday becomes G5^*

If the audit trail is breached or mined by HIE staff, there is no way to know that AY#! *iUOP refers to me

However, I can ask the HIE to run an audit on AY#! *iUOP G5^* messages to ensure the payloads were delivered. We get a perfect audit trail that's non-disclosing.

Such hashing approaches for anonymous linkage of patient records are very powerful and I recommend you study the work of Jeff Jonas, described in this post and this powerpoint. Linking identity among heterogenous databases will be required for healthcare reform and emerging ACO business intelligence applications. Doing it without having to disclose identity of the patient gives us the functionality we need without the risk.

Thus, Massachusetts has decided to use Direct without human readable personally identified metadata, instead adopting hashes of personal identifiers in the envelope and audit trail. The HIE cannot be asked to mine audit trails by anyone but the sender of the messages, and the audits themselves are non-disclosing.

We have broad support for this approach and we'll let you know how it works in production.

A Moving Experience

2012-05-07T03:00:00.003-07:00

Last week I took a hiatus from my daily writing (except chronicling Kathy's progress on my Thursday post) to move our household from Wellesley to Sherborn, MA.

On weekends and nights, we packed, moved, and unpacked.

The rules we followed during the process were

1. Living things first - ensure the health of each other, Kathy's father (who is moving in with us), and our animals
2. Empty the old house - although it's appealing to focus on creating a new life, the old one must be swept clean first
3. Focus on basic function in the new house - bedrooms, the kitchen, and bathrooms are more important than the living room, family room, or garage
4. Repairs to the new house - no matter how attentive a seller might be, there will always be dozens of small repairs to do whenever a house changes hands
5. Aesthetics in the new house - it will be weeks before all the boxes are emptied and everything is restored to order. That's ok.

When we packed, we triaged items into three piles - save, donate, or recycle.

During the unpacking process, I reflected on the things we kept. Why did we save the things we did?

Because they are meaningful parts of our lives.

The photo above illustrates a few items from the top drawer of my dresser:

C. Everett Koop's Coin that he gave me in 2008 after I presented the Koop lecture at Dartmouth

The neckerchief holder for my cub scout uniform from 1969. My father made it for me by hand tooling leather using supplies he purchased from the Tandy Company in the pre-Radioshack days

An integrated circuit tie tack given to me by Professor Frederick Termon, commemorating the first microprocessor used in Hewlett Packard products. The chip has an embedded photo-micrograph signed by David Packard and Bill Hewlett

A tiny birdhouse that my daughter and I found while geocaching at one of the most remarkable geocaches - the Depot in Needham.

A sleigh bell that my daughter received when our family spent a winter's night on the Polar Express. I can still hear it's sweet sound

A coin, a piece of leather, a plastic tie tack, a little birdhouse, and a bell may seem like trinkets, but to me they represent milestones, emotional moments, and treasured memories. They may have little monetary value, but to me they're priceless.

During our move we wanted to consciously think about what we own and why we own it. Now that we've moved, we're reducing our belongings to those things that really matter as we chart a new course to the future.

Our Cancer Journey Week 20

2012-05-03T03:00:00.003-07:00

Kathy's MRI showed no evidence of tumor and her surgeon worked with her to develop a go forward plan - lumpectomy on May 11 instead of mastectomy.

This has been a busy week moving Kathy, 2 cats, 2 rabbits, and 6 chickens to our farm in Sherborn, Massachusetts. I've spent my nights unpacking boxes instead of posting blogs. I'll return to a normal writing schedule next week.

Here's the MRI results from Kathy's imaging last week:

HISTORY: 49-year-old female with locally advanced left sided breast cancer who is undergoing neoadjuvant chemotherapy. Please assess response to treatment.

COMPARISON: No prior breast MRIs are available. Correlation is made with mammograms dated April 25, 2012 and December 13, 2011.

TECHNIQUE: Multiplanar T1- and T2-weighted images were acquired on a 1.5 Tesla magnet including dynamic 3D imaging obtained prior to, during, and after the uneventful IV administration of 0.1 mmol/kg of gadolinium-DTPA.

Multiplanar 2D and 3D reformations and subtraction images were generated on an independent workstation. The dynamic contrast enhanced 3D series was sent to an independent workstation for computerized assessment of contrast dynamics. CAD analysis facilitated DCE interpretation.

BILATERAL BREAST MRI WITH AND WITHOUT CONTRAST: There is minimal background
parenchymal enhancement. There is no suspicious focal enhancement or mass in either breast. The left breast skin appears thicker compared to right. Post-surgical changes are present in the left axilla consistent with history of sentinel node biopsy. There is no evidence of pathologically enlarged axillary lymphadenopathy.

IMPRESSION:
No suspicious focal enhancement or mass seen on MRI to correspond with known malignancy. The left breast skin appears thicker compared to right; clinical correlation is recommended.

In summary, there is no longer any evidence of tumor. Based on this positive finding, her breast surgeon scheduled an urgent appointment with Kathy to formulate next steps. Together, Kathy and Dr. Houlihan agreed on the following:

"I just saw Kathy Halamka who has had a complete remission by MRI after Cytoxan/Adriamycin times 4 dose dense and 5 rounds of Taxol, which was discontinued due to Taxol toxicity. I plan to do a wire location with two wires of the two clips on 5/11. I plan an en bloc resection. If margins are ok, plan Radiation Therapy. If residual disease, probable mastectomy. Single micro met in sentinel node--plan no axillary dissection based upon current guidelines."

So far so good The numbness in Kathy's hands and feet is better than it was - pins and needles rather than complete lack of sensation.

This week our lives are returning to normal post chemotherapy and post move. Six more chickens arrive tomorrow. Our next milestone will be lumpectomy with local anesthesia on May 11. We're all hoping for negative margins (no sign of active disease).

Cool Technology of the Week

2012-04-27T03:00:00.000-07:00

As IT departments throughout the country work to protect the privacy of and ensure the data integrity of patient records, it's important to understand the threats we all face.

Websense has issued their 2012 threat report, which I recommend you download and read (it's free)

You'll discover that in 2012
• 82% of web-based malware is hosted on compromised legitimate hosts
• 55% of data-stealing malware communications are web-based
• 43% of the activity inside of Facebook is categorized as streaming media
• 60% of phishing attacks are hosted in the United States
• 36% of malware is hosted in the United States

IT departments are challenged with protecting security with sometimes unpopular policies and difficult to use technologies. It's very cool to see the 2012 threat report which validates the work we have to do.

Our Cancer Journey Week 19

2012-04-26T03:00:00.000-07:00

Last week, Kathy's oncologists made the decision to stop Taxol chemotherapy permanently because Kathy has lost so much function in her hands and feet. Yesterday Kathy had a diagnostic mammogram and breast MRI to evaluate the impact of her treatment on the tumor. We'll now move to the next phase of treatment decision making. Will she benefit from any additional chemotherapy or can we move on to surgery, either lumpectomy or mastectomy?

It's been three weeks since Kathy last received Taxol and sensation is beginning to return to her 4th and 5th fingers. Her thumbs, 2nd and 3rd fingers, and palms are still too numb to feel a pin prick. Taxol affects each patient differently. The degree of numbness, the recovery between treatments, and the amount of permanent disability are highly variable. Kathy's clinicians believe she is among the most sensitive patients to Taxol.

Chemotherapy is not a precise science. There is no controlled trial that suggests 5 cycles of Taxol are insufficient and 9 cycles are perfect. For Kathy, the 5 cycles she received may have given her the best balance of benefit and risk.

Given that chemotherapy was stopped, an objective analysis of the tumor is important. Does she have residual cells or has all 5 centimeters of the tumor disappeared?

Here's her mammography report:

Left breast with two clips, no visible mass, left axilla scar, skin thickening
Impression - resolution of tumor mass since 12/2011

The radiologist reading the study called the result "miraculous"

We'll have an interpretation of her MRI tomorrow.

Our next step is to confer with her care team and decide if there is any benefit to additional chemotherapy, such as a final cycle of Adriamycin/Cytoxan. Kathy's hair is beginning to grow back (described by her as gray/white peach fuzz) and her body is starting to recover from weeks of intravenous poisons. Her liver enzymes were elevated modestly last week, likely due to the Taxol, providing further evidence that chemotherapy drugs are not benign. She'd prefer to close the chemotherapy chapter and move on to surgery as soon as possible. During this entire process, it was not the loss of a breast that was her greatest concern, but the cumulative effect of chemotherapy on her mind, body, and spirit. It would be good to declare the chemotherapy process finished.

In the upcoming days, we'll finalize a go forward plan. It may be that lumpectomy in May followed by radiation this Summer will be our final steps on this journey. More to come!

Five IT Tactics of an Accountable Care Organization

2012-04-25T03:00:00.002-07:00

I recently presented a webinar outlining the the IT work ahead to support Accountable Care Organizations.

Here are the slides that I used.

I recommended five priorities to create a foundation for care management and population health:

1. Universal adoption of EHRs - every clinician in an ACO needs to record data electronically, ideally using the same EHR vendor. If not the same EHR, then using common pick lists/vocabularies enables data to be comparable across practices. At BIDMC we created a model office workflow to ensure data is recorded by individuals with the same role at the same time in the same processes using the same value sets.

2. Healthcare Information Exchange - data should be shared among caregivers for care coordination and panel management. Approaches can include viewing data in remote locations, pushing summaries between providers, or pulling summaries from multiple sites of care. BIDMC has created novel approaches to secure data sharing as well as participated in many federal and state HIE pilots.

3. Business Intelligence/Analytics - once data is collected and shared, it needs to be analyzed retrospectively to identify gaps in care and prospectively to ensure patients receive the right care at the right time during their encounters with clinicians. BIDMC has worked with the Massachusetts eHealth Collaborative to create a community-wide quality data center as well as piloted popHealth to support our analytic needs.

4. Universal availability of PHRs - engaging patients and families in their care, ensuring communication of care plans and achieving seamless handoffs, is essential to keeping patients well. BIDMC has offered comprehensive PHRs to all of its patients since 1999.

5. Decision Support Services - care management requires alerts, reminders, pathways, and guidelines. Ideally, all members of the care team will receive decision support inside their electronic record based on enterprise rule sets. At BIDMC, we've used the concept of Decision Support Service Providers to to turn data into knowledge and wisdom inside our EHRs and web applications.

Of these five tactics, the biggest challenge is defining the care management rules - what conditions, wellness measures, home care interventions, best practices, and evidence should be incorporated into the point of care and analytic systems? Yesterday, at the BIDMC Clinical IT Governance Committee, we agreed to to charter a working group of experts to set these priorities so that our care management strategy is well planned and not a random collection of individual projects, driven by individuals with specific niche requirements (squeaky wheels or siloed departmental requests). It's a good start.

Managing Distributed Authentication

2012-04-24T03:00:00.002-07:00

As the nation begins its pilots of pioneer Accountable Care Organizations and shares more data for care coordination and population management, IT departments will be asked to make clinical records available to increasing numbers of loosely affiliated clinicians and staff.

The challenge will be managing the authentication and authorization of a diverse population of legitimate users.

BIDMC stakeholders met this week to discuss best practices for managing distributed authentication while protecting privacy. We suggested three approaches:

1. Use well defined rules to approve new accounts for external organizations in addition to implementing robust audit systems for monitoring account use

As clinical relationships become increasingly complex, it is no longer sufficient to use staff/credentialing privileges as the gating factor for creating accounts with clinical access rights. Organizational legal relationships (agreements signed between entire organizations), chain of command sponsorship (MD leadership at an organization requests access for appropriate clinicians), and patient referral patterns (coordination of care requires specific team member access) are all valid reasons for authorizing users. Since management of accounts across organizations is challenging, it is important to review audit trails via automated and manual methods, enforcing minimal need to know and appropriate clinical data use policies. We already use a variation of this approach for those external clinicians caring for BIDMC patients who need access to our read-only web-based provider portal.

2. Federated authentication

Although one organization can issue credentials to employees of affiliates, it is challenging to monitor changes in the status of users at outside organizations. What if a clinician's role changes or they leave? If one organization trusts the credentials of another organization, a federated approach can provide more timely oversight of access rights. At Beth Israel Deaconess, we've created a technology that enables EHRs at outside organizations to access records of patients shared in common with BIDMC - the "magic button". A trusted associated organization manages clinical access to its own systems, and then grants those authorized users rights to BIDMC records for only those patients registered at the local site and BIDMC. Although comprehensive legal agreements to enable this approach take time to create, the benefit is better account oversight when roles change at outside organizations.

3. State HIE trust fabric

Approaches 1+2 work well for clinician access to provider portals. For State HIE approaches that involve pushing data between organizations, another approach is possible - using certificates to create a trust fabric for the entire community. As part of the Massachusetts HIE infrastructure, we're creating directories and security certificates that enable any provider to securely transmit content to any other provider with patient consent. Processes are created to issue certificates to trusted organizations which sign Data Use and Reciprocal Support Agreements (DURSA). Once the security infrastructure and agreements are in place, any clinician can leverage the community trust fabric, using their existing EHRs and organizational credentials, to send data to another clinician.

Accountable Care Organizations and integrated delivery networks have the challenge of sharing more data at the same time that the regulatory/compliance environment requires greater security. These three approaches are all useful tactics for the authentication and authorization management improvements we will all have to make in the months ahead.

Common Terminology Services

2012-04-23T03:00:00.001-07:00

The HIT Standards Committee has tirelessly focused on content, vocabulary and transport standards. When it comes to vocabularies, they've tried to do three things

1. Select one vocabulary per domain of medicine (problems, medications, laboratories, demographic elements, structured data questionnaires etc.), which they've achieved n the 2014 edition of the standards and certification NPRM recommendations.

2. Recommend that the National Library of Medicine is the optimal organization for doing content review of value sets, offering feedback to value set and measure developers.

3. Recommend that a government "value set hosting entity" distribute all the necessary vocabularies and code sets, making them available for download or real time query.

For #3, we'll need a body of standards to enable the sharing of value sets. From our investigation thus far, the Common Terminology Services (CTS) family of standards seems like the leading candidate to enable automated exchange of vocabulary resources.

What is CTS?

It is the work of some 20 years, merging early terminology services work (Pathak, et al; LexGRID, JAMIA) and the 3M/Intermountain work into the LexGrid environment . It has evolved through three standards organizations CTS1 (in HL7 and ISO) and CTS2 (in the Object Management Group). It is now an industry standard through OMG.

What does it do?

The core principle is that we should not have different ways (Custom programming, REST protocols, SPARQL queries , etc) of accessing terminologies. CTS2 is a unifying access method for terminologies, and ontologies that is an Application Programming Interface (API) specification, and easily deployed through REST or SPARQL queries. It supports things as simple as word/code pairs, and full ontologies such as OWL. It forms the backbone of the National Center for Biomedical Ontologies (NCBO) and earlier versions of at the National Cancer Institute LexEVS services. General Electric has adopted it, as the core terminology services in their work with Intermountain Healthcare (Huff et al). The specification is public and an open-source reference implementation will soon be available. Any company or group is free to establish as CTS2 service.

NLM is working on CTS2 support for its terminology services.

Although you may not have heard of CTS, it will be an important mechanism for EHRs to download and query the curated vocabularies and code sets required for Meaningful Use in 2014 and beyond.

Thanks to Chris Chute and the folks at Mayo for briefing me about it.

Cool Technology of the Week

2012-04-20T03:00:00.001-07:00

In their first week of life, chicks need a brooder temperature of 95F. Every week thereafter, the temperature is reduced 5F so that by 6 weeks they're at room temperature (70F) and ready for life in an outdoor coop.

Here's the engineering challenge - how do you make an infrared heat lamp secure (so that it does not fall into the brooder and start a fire), yet infinitely adjustable so that it be can be raised and lowered easily to adjust the temperature?

The answer - a locking, ratcheted pulley system.

I secure my racing kayak to my Prius roof rack using the Thule Quick Draw which includes a carabiner, S-hook, and rope ratcheting pulleys.

Now, our heat lamp is secured to an overhead pipe via 8 feet of nylon rope and a ratchet. Just pull on the rope to securely raise the lamp - it cannot fall. To lower, release the ratchet button.

I have a digital thermometer inside the brooder as general guidance, but watch the chicks behavior for a more accurate assessment of their comfort. If they are clustered together for warmth, I lower the lamp two inches. If they are separated and hiding in the corner of the brooder to cool down, I raise the lamp two inches. At this point, they're eating, drinking, and peeping comfortably - a glorious first week of chicken life.

A safe, easy to adjust brooder heat control using a ratcheted pulley system from my Thule rack. That's cool.

Our Cancer Journey Week 18

2012-04-19T03:00:00.020-07:00

On Friday, after careful consideration, the BIDMC oncologists elected not to treat Kathy because her side effects from Paclitaxel (Taxol) were so severe - increasing pain and numbness in her hands and feet. She cannot hold a pencil, use a paintbrush, or eat with chopsticks. She has to nap mid day because of fatigue caused by constant neuropathic pain. Thus far, the Vitamin B6 has not helped and her clinicians recommended Gabapentin (Neurontin) to reduce the discomfort. She's not enthusiastic about masking symptoms. She'd prefer to monitor her body's progress objectively.

Kathy's attitude toward cancer treatment is aggressive - "poison me today for a cure tomorrow". She can accept short term pain for long term gain. The problem with neuropathy is that it may be permanent. She admits that permanent loss of her ability to create art or feel the difference between silk and sandpaper is challenging to accept.

Tomorrow, her clinicians will evaluate her progress and consider several options:
*Stop chemotherapy and await the results of the April 25 imaging studies. She may already be treated sufficiently
*Continue chemotherapy with an agent similar to Paclitaxel called Docetaxel (Taxotere)
*Stop the entire class of Taxane therapies and return to a cycle of Adriamycin/Cytoxan since that seemed to work so well in her early therapy

There are many possibilities and we're confident that all will be well.

Last Saturday we visited the Erikson Grain Mill, a family operated supplier of feeds for chickens, horses, and other farm animals. As luck would have it, a customer just cancelled their order for six Araucana/Ameraucana chicks (photo above). Moments after we arrived another family offered to adopt them, but we had already made up our minds. On Saturday at 2pm we became chicken farmers. Our young hens are enjoying the warmth and security of their new brooder (a Rubbermaid 37 gallon storage container), infrared lamp, and feeder. While at Erikson's we ordered the remainder of our 2012 coop population - 2 Buff Orpingtons, 2 Brahmas, and 2 Jersey Giants.

There's one other addition to our property that will begin life in our coop but then free range - Guinea Fowl. I've had Lyme disease twice and the Guinea Fowl are well known tick eaters. They'll start in our brooder for 6 weeks, live in the coop for 6 additional weeks, then we'll let them free range over our 15 acres, training them to return to the coop at night for safety.

Although Kathy's hands and feet are numb, she's very capable of caring for the new additions to our lives. Our move preparations are nearly complete so she can turn her attention to our next life phase. It's much more enjoyable to design the ideal coop for a small flock of chickens than to focus on the short term disability caused by cancer treatment. There are even a few chick brooder engineering problems for me to solve. More about that in tomorrow's post.

The April HIT Standards Committee

2012-04-18T18:16:00.000-07:00

The April HIT Standards Committee included a comprehensive review of the Standards & Certification Criteria Notice of Proposed Rulemaking (NPRM) by each workgroup/task force/power team during a 5 hour marathon session. The capstone of the meeting with a thematic review of the entire NPRM by the Patient Engagement Power Team.

The meeting began with a "chapter and verse" review of each NPRM standard.

Here are the section by section highlights of our discussion:

§ 170.314(b)(3) E-prescribing
The NPRM requires NCPDP Script 10.6 for content and RxNorm as the vocabulary. We also recommended that HL7 2.x be allowed for the highly constrained use case of pharmacies located within a hospital as part of an organized healthcare arrangement, since such interfaces are widely implemented today.

§ 170.314(b)(3) Demographics
The NPRM requires OMB standards for race and ethnicity, ISO 639-1 subset of 639-2 for language and ICD10 (not ICD10-CM) for Cause of Death, which has been used by government to code cause of death since since 1999. We noted that ICD-10 CM has been delayed and recommended it be removed entirely from the NPRM. We recommended that the HIT Policy Committee consider the use of ISO 3166-2 if country of birth is a desirable data element. We also considered the use of a more granular race/ethnicity code set such as CDC, but deferred this to the next edition of Meaningful Use.

§ 170.314(a)(4) Vital Signs and other observations
The NPRM does not require any standards in this area currently. We referred to the September 2011 vocabulary and code sets recommendations and suggested that ONC specify LOINC for specific study name, SNOMED-CT for appropriate findings, and UCUM for specific units of measure for all structured observations including vital signs. We also suggested that patient experience, such as pain scales, be recorded using LOINC for assessment instruments and SNOMED-CT for appropriate responses.

§ 170.314(a)(5) Problem Lists
The NPRM requires SNOMED-CT for problem lists. We recommended that the HIT Policy Committee consider the use of a field that represents an administrative categorization of the visit/billing diagnosis to support secondary uses of data but did not make a specific standards recommendation.

§ 170.314(a)(8) Clinical Decision Support
The NPRM specifies the use of the "Infobutton" standard. We recognize that clinical decision support includes access to educational materials, alerts, and reminders. We felt that a functional description of capabilities rather than a specific standards requirement would best achieve the policy goals. We made "Infobutton" optional, not a certification criteria, to encourage its adoption but also enable innovation.

§ 170.314(a)(17) Electronic Medication Administration Record
The NPRM does not constrain the technological approach to ensuring the right medication is given to the right patient via the right route at the right dose at the right time. The NPRM specifies the use of NTP to synchronize clocks. We agree that the technology for EMAR should not be over specified, enabling innovation.

§ 170.314(e)(2) Clinical Summmaries
The NPRM specifies the use of Consolidated CDA and several vocabularies (OMB Race/Ethnicity, ISO 639-1 subset of ISO-639-2 for language, SNOMED-CT for problems, LOINC for labs, and RxNorm for medications). We recommended that ICD-10 PCS be replaced with SNOMED-CT for procedures, completing our recommendation to remove ICD-10 CM and ICD-10 PCS entirely from the NPRM.

§ 170.314(a)(14) Patient Lists
The NPRM provides a functional description of capabilities rather than a standard for the generation of lists of patients matching specific clinical criteria. We noted that no current standard exists to transmit lists of patients in batch to registries and repositories, although this is desirable for the next edition of Meaningful Use.

§ 170.314(a)(16) Patient Education
The NPRM requires Infobutton. As with Decision Support, we recommended that Infobutton be an optional standard, not required for certification.

§ 170.314(b)(1) and § 170.314(b)(2) Transition of Care Summaries
The NPRM specifies the use of Consolidated CDA and several vocabularies (OMB Race/Ethnicity, ISO 639-1 subset of ISO-639-2 for language, SNOMED-CT for problems, LOINC for labs, and RxNorm for medications). It also recommends the use of the Direct implementation guide, XDR/XDM, and optionally SOAP for transport. We had a robust discussion about the parsimonious approach to transport. We concluded that the best approach would be to require the Direct implementation guide and encourage the use of XDR/transport standards of NwHIN Exchange by listing XDR and the S&I Framework Implementation Guide for NwHIN Exchange transport as optional, not certification criteria. This was truly an achievement - we succeeded in specifying one transport standard requirement for every EHR. Wes Rishel made an important point about the need to support "bilateral asynchronous upgrades" - the notion that different versions of transport Implementation Guides might be used over time by senders and receivers. We have to be very careful to ensure backward compatibility as our transport standards evolve.

For the remaining NPRM sections, we worked by the principle of consent unless otherwise noted by standards committee members.

§ 170.314(e)(1) View, download, and transmit to 3rd party.
We recommended that patient download capability be required to use Consolidated CDA as a minimum. We noted that TLS is an example of a means to secure the transmission channel but also recognized other approaches are possible. We recommended functional criteria for securing endpoints rather than a named standard.

§ 170.314(d)(2) Auditable events and tamper-resistance.
We noted redundancy in the NPRM - audit logs cannot be modified, but there is a need to detect modification. We also recommended that ASTM E2147 be used as a list of audit log data elements.

§ 170.314(a)(13) Family History
The NPRM does not require a specific standard. We concur that no standard is widely implemented today, although the Surgeon General's XML for family history has been used more than the HL7 pedigree standards.

§ 170.314(f)(7) and § 170.314(f)(8) Cancer Registry Reporting
We noted that the CDA Cancer Registry standard is not deployed in production. We also noted that this refers to a menu set item, so it is not a general requirement of EHR certification. It is a reasonable early standard for oncology specific EHRs.

§ 170.314(c)(1)-(3) NQF Quality Data Model
We noted that additional work on the Quality Data Model will be needed to ensure it aligns with all the other recommendations we made at today's meeting. We also noted that QRDA Category II and III are not yet balloted standards.

The Standards Committee reaffirmed its acceptance of all these recommendations by consensus. A remarkable achievement.

Leslie Kelly Hall then presented the guiding principles of the Consumer/Patient Engagement Power Team, a truly remarkable body of work assembled in very limited time.

Our next process step is to draft and review a final transmittal letter to ONC, which we'll do over the next few weeks.

The HIT Standards Committee is such an effective group with amazing expertise and camaraderie that today's meeting was a perfect storm moment. This is definitely a time we'll all be telling our grandchildren about.

Brainstorming about a Collaborative Data Center

2012-04-17T03:00:00.003-07:00

Meg Aranow, the former CIO of Boston Medical Center and now a principal at Aranow Consulting recently assembled several of the IT leaders in Boston to discuss opportunities for reducing costs and enhancing infrastructure by pooling our collective resources. Here's her guest post describing the exploration:

"I recently met with IT leadership from Partners Healthcare, Childrens Hospital Boston and Beth Israel Deaconess, all teaching affiliates of Harvard. The topic around which we convened was to discuss the idea of a collaborative datacenter.

With the potential upside of staffing and procurement efficiencies stipulated as a launching point for the discussion the conversation turned to what it would take to make it happen.

There were issues of (very) long term lease obligations, the cost of re-routing communication lines and the daunting spectra of demanding SLAs.

Clearly all of these challenges could be met by the combined IT talent…given a solid business case, time and resources. But it was also clear that given all of the demands IT departments are already facing – several of which are federally sponsored - this particular business case would have a hard time swimming to the surface.

Although I had been ready to engage in a vibrant discussion about competing business priorities, there was a vibe that nothing short of either fortuitous opportunity (i.e. the coincidental conclusion of independently negotiated leases) or a mandate would get enough attention to even be debated. The business case we built would have needed to be great, not just good or promising.

I am not sure if a collaborative datacenter is a good, never mind the best, idea. But the more general observation is that the current climate makes it difficult to devote resources to the exploration of new ideas. Most of hospital IT is consumed with 1) the day-to-day support and tweaking of what already exists and 2) projects in support of the legally mandated future initiatives.

We concluded the meeting thinking it might be an interesting idea to some day explore if there were time. But not now. "

Thanks for doing this Meg. In a world of infinite demand and limited IT supply, all CIOs feel "time bankrupt". The alignment of opportunity, regulatory mandate, cost pressures, politics, and prioritization is definitely a perfect storm that occurs only rarely.

An Expert's Guide to Moving

2012-04-16T03:00:00.002-07:00

Kathy and I move from our current house to our farm on April 27, so we have just one weekend of packing to go. Nancy P from Dallas posted a spectacular comment that is so accurate and timely I had to share it broadly:

"K. and J. - You may enjoy my 30 day packing calendar, written from my experience.

DAYS 1-5: We are lovingly admiring and discussing each of our material possessions while discarding what we no longer use. We’ll have a garage sale and make trips to Goodwill to donate unused items. I’ll wash, dry and organize objects to be sold or donated. We have plenty of boxes, bubble wrap, Sharpie pens and packing tape. Boxes are organized in categories based on their contents. We write a detailed list of the items in the right-hand corner of the top of the box and carefully seal it with packing tape.

DAYS 6-10: It is not realistic to cull through all of our belongings in 30 days. We’ll cull and reflect when we unpack. We’ll also have a lot more time when we unpack to plan a garage sale or make trips to Goodwill. A detailed list of contents of each box is not needed, so all boxes are now labeled only with a general category in the upper right hand corner. I’m segregating my son’s possessions so he can go through them himself. Things are starting to look a little messy around here. I need a GPS to locate that cup of tea I keep misplacing!

DAYS 11-15: It is increasingly unproductive to sort and categorize items before boxing them. So with the miracle of bubble wrap, we’ve taken a new approach: We can simply dump the contents of an entire drawer in bubble wrap, stuff the bubble wrap in a box, and label the box with the location of the drawer, like 'Master Bathroom: far left cabinet, third drawer down.' We’re able to safely pack in bubble wrap the entire contents of drawers and closets in no time at all. We’ll just sort and categorize the contents of these boxes when we unpack.

DAYS 16-20: Bubble wrap is overrated. You can only fit about ½ as much stuff in a box when you use it. And it takes forever to cut the size you need. Plus - you pack items between the bubble wrap layers, and many of these things will fall out from the layers and break as you unpack, so what’s the point? I’m trying to be more pragmatic. After all, these are only material possessions. As Bertrand Russell so eloquently stated 'It is preoccupation with possessions, more than anything else, that prevents men from living freely and nobly.' And as I so freely and nobly state 'Do we really need two full sets of martini glasses, anyway?'

DAYS 21-25: Rather than box up and move things of value that we don’t want, we will simply leave them behind for the new proprietors. I doubt the new owners will mind that we leave them items with inherent use and value - like that 30 pound Folgers coffee tin full of nuts and bolts in the garage. The value of the nuts and bolts aside, the tin itself is an antique. And we haven’t even opened those tubs of frozen yogurt in the freezer, which would make a thoughtful housewarming surprise. We’ve also learned that we don’t need to tape every box, because they are just being stacked on top of each other, so we only need to tape the top one.

DAYS 26-30: The realtor stopped by and declared that we can’t leave anything behind for the new owners. 'It all has to go,' she said with that little smug look that I have grown to dislike. So all the rest of this stuff is going out on the curb, and whoever wants to pick it up can have it. And if my kid wants his things…well…he’ll just have to come get them, or they will also be out there with the rest of our clutter. How did we accumulate all of this worthless stuff? What could we possibly have wanted with 73 packets of soy sauce? The realtor also found my misplaced cup of tea somewhere in the front hall. I did not appreciate the face she made; very unprofessional, if you ask me. And by the way, you do need to tape up each and every box –but I’ll spare you the details - and before I tape up my next box, I’m just throwing the Sharpies in there with them. Because at this point what am I going to write in corner of the box, 'Lots of other crap'? I’m overwhelmed…I really need to take a break…Damn it, I packed the martini glasses!"

Although I've never owned a martini glass, we'll be in Days 26-30 next weekend and I suspect I'll need one!

Cool Technology of the Week

2012-04-13T04:00:00.002-07:00

I've written several posts about BIDMC's use of "private cloud" approaches to host electronic records and gather community-wide quality data. Healthcare organizations have avoided the use of "public cloud" because of HIPAA/HITECH privacy concerns, lack of breach indemnification/data integrity guarantees, and the unwillingness of many cloud providers to sign business associate agreements.

Although it has not been widely discussed in the industry, the Centers for Disease Control and Prevention's (CDC) Biosense 2.0 initiative has done ground breaking work to solve these issues, using Amazon's AWS GovCloud to create a national repository of syndromic surveillance data that includes all the protections needed to protect privacy including independent security testing at the FISMA-Moderate Level.

CDC is the first government agency to complete all the rigorous certification needed to host sensitive data in the public cloud.

CDC has also built gateways that make it easy for public health departments to submit data to the cloud - a Direct Project adapter, an NwHIN Exchange adapter, and others. Meaningful Use Stage 1 requires the testing of health information exchange with public health and Beth Israel Deaconess did its transactions with the Boston Public Health Commission (BPHC), which stored them in CDC's public cloud. BPHC was the first public health department in the nation to provide data feeds to the Amazon infrastructure.

Finally, CDC has enabled queries of the cloud data using multiple platforms including open source analytical tools such as R.

A secure, HIPAA-compliant public cloud that includes healthcare information exchange gateways and analytical tools. That's cool!

Our Cancer Journey Week 17

2012-04-12T03:00:00.001-07:00

Although Kathy's body is sore and her hands/feet are numb, her mood is good as we finalize our house sale, pick out the chickens we'll raise on the new farm, and prepare for the life ahead instead of looking back on our old life and the events of the past 5 months.

She lost her last eyebrow hairs this week and the toenails on her big toes will likely fall off soon. She cannot open jars or water bottles because of diminished grip strength and today she visits the orthopedist for followup of her probable right knee medial collateral ligament tear. But she's happy.

The chickens we've decided to raise are Buff Orpingtons, Jersey Giants, and Brahmas - all docile large breeds. We'll likely raise a small number to start with, ensuring we learn chicken care incrementally. We have local farms and grain mills as well as web-based chicken farming resources to help us. This Summer, we'll build a portable chicken tractor, then design a permanent coop for Winter.

Just 4 more treatments of Taxol and then hopefully Kathy's weakness/numbness will resolve as we move onto surgery and radiation.

Milestones ahead - films/orthopedic examination today, MRI of the breast on April 25 to determine if any detectable tumor remains, then a breast surgeon appointment on May 31. Although lumpectomy is a long shot and mastectomy is likely, Kathy's response to chemotherapy has been so good, that there's a possibility for minor rather than major surgery. We'll know by June, just about the time our chickens will be old enough to enjoy the long Summer days outside in our meadow.

Clinical Query, I2B2, and QueryHealth

2012-04-11T03:00:00.002-07:00

Today I'm presenting an overview of our new clinical trials/clinical research business intelligence system, called Clinical Query to the BIDMC Chiefs and Vice Presidents.

Here are the slides I'll use.

The principle behind Clinical Query is that investigators will want to ask questions, preliminary to research, that will help them understand the potential statistical power of a clinical trial or the availability of data for clinical research.

What did we do?

We loaded 2.2 million patients (1997 to the present) and 200 million data elements into a repository, ensuring that every data element was mapped to a controlled vocabulary. When then built a web-based query tool capable of navigating 20,000 medical concepts via boolean (AND/OR) expressions of arbitrary complexity.

Labs were mapped to LOINC codes.

Problems/Encounter Diagnoses were mapped to SNOMED-CT codes.

Medications and Allergies were mapped to RxNorm codes

Demographics were mapped to the same code sets required for Meaningful Use.

The result is that any authorized user, who has completed our institutional HIPAA training, can run real time population queries.

For example, since my wife has Breast Cancer and has taken Ace Inhibitors, maybe I want to study the association of the two and I need a cohort of potential subjects. The query from start to finish took 3 seconds and yielded 2421 +/- 3 patients.

Why +/- 3?

We never report the exact number to ensure that the privacy of individual patients is protected since I could create a query so arcane that it identifies a single individual. The fictional example I've used in lectures is: "my neighbor has one blue and one green eye. Show me the count of all blue-eyed, green-eyed people taking mental health medications." A count of 1 could be disclosing. By adding arbitrary numbers to every result we ensure that population queries remain ambiguous.

The BIDMC and Harvard-wide Institutional Review Boards (IRB) decided that aggregate de-identified queries, preliminary to research, may be done by authorized, trained users without requiring IRB approval.

Additional data extraction that would be used as part of offering a clinical trial or clinical research opportunity to a patient does require IRB approval.

Many novel explorations are possible such as the fact that 80,000 patients had ischemic heart disease and no history of Vioxx use, while 800 patients had ischemic heart disease and took Vioxx, which was withdrawn from the market in 2004 because of concerns about increased risk of heart attack and stroke with long-term, high-dosage use. Clinical Query can help investigators explore the temporal relationship between the introduction of Vioxx and the frequency of ischemic heart disease.

Clinical Query is based on the I2B2 Standards for aggregate query/response of clinical data bases. Over 60 hospitals have implemented I2B2 applications, often in support of the Clinical and Translational Science Awards (CTSA).

I've written about the QueryHealth initiative which is using HL7 Health Quality Measures Format (HQMF) to query heterogeneous data sources.

What if the QueryHealth initiative could access I2B2 connected data sources, such as enabling pharmaco-vigilance queries from the FDA to be broadcast across the country?

We can best protect privacy by keeping all our patient identified data inside our data center and responding to external queries from payers, government agencies, and public health with aggregate numbers. Reporting on the number of patients taking Vioxx and the number of patients presenting with chest pain without submitting patient identified data to external registries minimizes risk.

We'll explore the intersection of QueryHealth and I2B2 at BIDMC in the upcoming months and I'll write about that, just as I wrote about our PopHealth lessons learned.

I've written about our efforts to Free the Data and create a learning healthcare system. Today marks a milestone for enabling our data to be explored with Clinical Query while protecting the security and integrity of our enterprise registries and repositories.