2012 has been a year of joys and sorrows. My wife had breast cancer, my mother broke her hip, my cat died of pancreatic cancer, I left my CIO role at Harvard Medical School to focus on BIDMC's emerging accountable care organization, and moved/consolidated two families from suburban houses into Unity Farm.
Some would consider this amount of change and challenge to be overwhelming.
I think of them as transformative.
It may sound strange to quote Marilyn Monroe when reflecting on Thanksgiving, but her words are appropriate:
“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.”
Without the catalyst of my wife's cancer diagnosis, we would not have sold our home and purchased the farm at a time when market conditions were ideal for both transactions.
My mother's hip fracture enabled us improve their house for accessibility and reconcile her medications.
My cat's unexpected illness educated us about animal care at a time when we took on the responsibility for 50 chickens, llamas/alpacas, and guinea fowl.
My job consolidation enabled me to channel all my passion and energy into healthcare information exchange at the federal, state, and local level such as the Massachusetts Golden Spike event.
Unity Farm has provided a healing environment for everyone in the family and the memories of the work required to sell two houses, close my wife's gallery and move her studio to the farm is fading fast.
BIDMC was ranked the #1 IT organization in America this year. We were the first hospital in the country to attest to meaningful use and receive stimulus funding. We achieved all our FY12 application and infrastructure goals.
Regardless of the events of any given day, temporary crises or urgencies pale in comparison to the well being of people. As we approach Thanksgiving 2012, all the people in my world are good.
My wife and daughter are happy. My parents are healthy. My Federal and State colleagues are working hard on challenging projects they enjoy. My BIDMC teammates are making a huge difference during the most exciting time in the history of healthcare IT. The citizens of Unity Farm are loved and well cared for.
In 2012, the events of each day were sometimes negative, but the trajectory for the year has been overwhelmingly positive.
As I tell my daughter, it's unclear what the endpoint will be, but as long as the journey along the way is the best you can make it, everything will be ok.
After all the events of the past year, I remained convinced that the future will be bright.
Thanks to everyone who traveled the path with me this year.
The Patient Experience of EHRs
I'm often asked if the use of EHRs diminish clinician-patient interactions in the exam room.
At BIDMC, Jan Walker and Tom Delbanco have done focus groups with patients about technology. Generally, they found that patients will embrace technology that gives them access to information about their care. At BIDMC, where we have both a patient portal and Wi-Fi throughout the hospital, doctors often arrive at the bedside to find a patient viewing lab results on an iPad, ready with questions about their tests.
The literature studying outpatient offices with computers in the exam room suggest computers do not get in the way as long as clinicians are facile with them and maintain eye contact with patients.
Here are three articles:
"The examination room computers appeared to have positive effects on physician-patient interactions related to medical communication without significant negative effects on other areas such as time available for patient concerns. Further study is needed to better understand HIT use during outpatient visits." J Am Med Inform Assoc. 2005;12:474–480. DOI 10.1197/jamia.M1741.
"Studies examining physician EHR use have found mostly neutral or positive effects on patient satisfaction, but primary care researchers need to conduct further research for a more definitive answer." J Am Board Fam Med 2009;22:553–562.
"With the implementation of the electronic medical record—called HealthConnect—in all exam rooms throughout the Kaiser Permanente health care delivery system, how computers in the exam room affects physician-patient communication is a new concern. Patient satisfaction scores were obtained for all primary and specialty care physicians in a large medical center in Southern California to determine how scores changed as physicians started using HealthConnect in the exam room. Results show no significant changes in patient satisfaction for these physicians. Although concerns were not realized that patient satisfaction might decrease after HealthConnect was introduced, there was also no evidence that introducing an electronic medical record in outpatient clinics increased patient satisfaction." The Permanente Journal / Spring 2007/ Volume 11 No. 2
Clinicians have different approaches to the use of technology in the exam room - iPads, typing into a laptop, or just taking notes then entering data outside of the exam room. When clinicians and patients work together to ensure safe, accurate, and timely record keeping, everyone wins. Certainly, there may be awkwardness when clinicians struggle with new technology and patients perceive a change in attentiveness. However, it is highly likely that as clinicians spend their entire practice lives using EHRs and all patient records are recorded in EHRs, that this awkwardness will disappear. Just as mobile devices have replaced newspapers and magazines as the favored way for adults to access media, the EHR and PHR, as well as the processes needed to use them, will become a standard part of every clinical encounter, supporting rather than detracting from the patient experience.
A Novel Idea for Managing Consent
In 2008, I wrote about representing privacy preferences in an XML form that I called the Consent Assertion Markup language (CAML).
At the November HIT Standards Committee we discussed the draft Meaningful Use Stage 3 Request for Comment (RFC), which includes a measure relating to query for a patient's record. The RFC suggests an exchange of authorization language to be signed by the patient in order to allow retrieval of the requested information. Discussion elicited the suggestion that perhaps patient consent preferences might be included as metadata with the data exchanged so that the patient approved uses of the data - treatment/payment/operations, clinical trials, transmission to a third party - could be respected.
After the meeting, Dixie Baker proposed a simple, scalable and powerful approach to avoiding the necessity of either exchanging authorization language for signature, and the complexities involved in exchanging patient preferences as metadata. Her suggested approach draws from both the CAML idea with the metadata idea, but simplifies privacy-management for both consumers and providers, while offering the kind of scalability needed for the dynamic, collaborative healthcare environment we envision.
Imagine that instead of having to fill out a new privacy-preferences form at each encounter, the consumer could select and manage her preferences with a single entity, and at every other encounter, would need only provide the URI to where her preferences were held. Then, upon receipt of a request for her health information, an EHR would only need to query the privacy-management service at the URI she provided to determine whether the request could be honored. Her preferences would be captured as structured, coded data to enable query, without having to exchange a complete "form" in order to adjudicate an access request. Per the CAML idea, this XML could include queryable preferences about what data the patient consents to exchange with whom and in what circumstances. This set of privacy preferences could be maintained by the patient and would include such concepts as institution-level permission to share data with partner insitituions, permission to send data using a health information exchange organization, and approval to use data for certain types of research.
Instead of sending these preferences with the data itself, the metadata header in Consolidated CDA summary exchange would include a Uniform Resource Identifier (URI) that points to the privacy-management service where the patient's privacy preferences are held.
This simple idea - represent patient's privacy preferences/consents in query-able XML at a specific URI - enables an entirely new approach to health information exchange, while making it easier for consumers to make meaningful choices, and manage them over time.
For example
1. A hospital is "pushed" a patient record from a primary caregiver. The hospital wants to push that data to a specialist. Before any data transfer is done to an outside organization, the URI is retrieved from the metadata and the patient's current consent preferences are applied to the data exchange.
2. An emergency department wants to pull data from multiple data sources to ensure safe, quality, efficient care of an unconscious patient. The URI of service holding the patient's privacy preferences is available from the state HIE, and the data is retrieved from various sources per the patient's preferences.
3. At discharge, the patient's information is to be pushed to the patient and the primary caregiver/referring clinician per meaningful use stage 2 requirements. Before the push happens, the patient's URI is checked for current data exchange preferences.
As we continue to work on a variety of "meaningful consent" approaches and support complex state privacy policy variants, the notion of recording patient privacy preferences in a place that is under the control of the patient and is query-able via a simple XML makes great sense.
I look forward to continued discussion of Dixie's ideas at the next Standards Committee meeting.
At the November HIT Standards Committee we discussed the draft Meaningful Use Stage 3 Request for Comment (RFC), which includes a measure relating to query for a patient's record. The RFC suggests an exchange of authorization language to be signed by the patient in order to allow retrieval of the requested information. Discussion elicited the suggestion that perhaps patient consent preferences might be included as metadata with the data exchanged so that the patient approved uses of the data - treatment/payment/operations, clinical trials, transmission to a third party - could be respected.
After the meeting, Dixie Baker proposed a simple, scalable and powerful approach to avoiding the necessity of either exchanging authorization language for signature, and the complexities involved in exchanging patient preferences as metadata. Her suggested approach draws from both the CAML idea with the metadata idea, but simplifies privacy-management for both consumers and providers, while offering the kind of scalability needed for the dynamic, collaborative healthcare environment we envision.
Imagine that instead of having to fill out a new privacy-preferences form at each encounter, the consumer could select and manage her preferences with a single entity, and at every other encounter, would need only provide the URI to where her preferences were held. Then, upon receipt of a request for her health information, an EHR would only need to query the privacy-management service at the URI she provided to determine whether the request could be honored. Her preferences would be captured as structured, coded data to enable query, without having to exchange a complete "form" in order to adjudicate an access request. Per the CAML idea, this XML could include queryable preferences about what data the patient consents to exchange with whom and in what circumstances. This set of privacy preferences could be maintained by the patient and would include such concepts as institution-level permission to share data with partner insitituions, permission to send data using a health information exchange organization, and approval to use data for certain types of research.
Instead of sending these preferences with the data itself, the metadata header in Consolidated CDA summary exchange would include a Uniform Resource Identifier (URI) that points to the privacy-management service where the patient's privacy preferences are held.
This simple idea - represent patient's privacy preferences/consents in query-able XML at a specific URI - enables an entirely new approach to health information exchange, while making it easier for consumers to make meaningful choices, and manage them over time.
For example
1. A hospital is "pushed" a patient record from a primary caregiver. The hospital wants to push that data to a specialist. Before any data transfer is done to an outside organization, the URI is retrieved from the metadata and the patient's current consent preferences are applied to the data exchange.
2. An emergency department wants to pull data from multiple data sources to ensure safe, quality, efficient care of an unconscious patient. The URI of service holding the patient's privacy preferences is available from the state HIE, and the data is retrieved from various sources per the patient's preferences.
3. At discharge, the patient's information is to be pushed to the patient and the primary caregiver/referring clinician per meaningful use stage 2 requirements. Before the push happens, the patient's URI is checked for current data exchange preferences.
As we continue to work on a variety of "meaningful consent" approaches and support complex state privacy policy variants, the notion of recording patient privacy preferences in a place that is under the control of the patient and is query-able via a simple XML makes great sense.
I look forward to continued discussion of Dixie's ideas at the next Standards Committee meeting.
Cool Technology of the Week
One of the hottest concert pop stars in Japan is an anime hologram with a vocal synthesizer. Meet Hatsune Miku who appears in live concerts, despite the fact that she does not exist.
She's a vocaloid created with software that anyone can use to create realistic rock performances.
Ms. Miku is not alone. She's done duets with fellow vocaloid hologram Megurine Luka.
Wired Magazine described the technology behind the creation of a wholly digital pop star.
Hatsune Miku is a cultural phenomenon in Japan, yet she lives only in the digital world.
That's cool!
Building Unity Farm - The Community
* What is the zoning?
* How will your neighbors react to wandering guinea fowl or an escaped llama?
* Are there other farms nearby?
For our farm, we chose Sherborn, a very agriculturally friendly town just west of Boston.
The Sherborn town bylaws indicate that no agricultural pursuit can be restricted. Of course, various wetland restrictions and environmental controls apply, but if we wanted to raise ostriches and emus on our 15 acres, we could. Our land was previously a 200 acre farm and our only current neighbors are a 55 acre apple orchard and a 15 acre property used for horse rescue/mini-donkeys. Those neighbors admire and support our livestock.
But what about nearby farms?
This week, we ate foods gathered or purchased from our farm and surrounding farms (photo above).
The western border of our property is the Dowse orchard. At the Dowse Orchard Farm Stand we purchased:
Romaine and red leaf lettuce
Field broccoli
Apples (Mac, Cortland and Empire)
Local seasonal pies
Fresh pressed apple cider
Just over the hill from us is a 1700's dairy farm - the Sunshine Farm.
We purchased:
Field turnips
Field carrots
Field onions
Homemade sweet corn veggie pizza
Just down the street from us is the Sweet Meadow Farm where we purchased sugar pumpkins and grain/hay for our animals.
At our own Unity Farm, we gather 8 eggs per day from our chickens. This season we grew eggplant, garlic, onions, and potatoes in our raised beds. In our kitchen garden we grew parsley, sage, rosemary and thyme. We planted our own apple orchard and will be planting an acre of high bush blueberries in the Spring. We're building a 20 foot x 72 foot hoop house that will enable us to grow year round produce.
Nearby, the Boston Honey Company runs a Honey CSA. Our share this year included fresh combs and local wildflower honey.
If December 21, 2012 really does bring cataclysmic or transformative events, living in Sherborn is good preparation for self sufficiency. From our perspective, it's an ideal farm community.
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