Ovarian Cancer Screening

Here is a real case study from American Family Physician with the correct "answers" that may surprise women (and men).  It is a common case in my practice too as more and more women are health conscious and want to do everything possible to detect early cancer.

CASE STUDY

A 35 year old woman presents for a routine well-woman exam.  She is worried about ovarian cancer because one of her

Building Unity Farm - The Bees Arrive

On Saturday night 96,000 Italian bees arrived at Unity Farm in 8 hives.   What are Italian bees?   Here is an overview of bee types.
There are many subspecies of the honeybee, Apis mellifera.  Each has different characteristics in temperament, honey production, winter hardiness, swarming behavior, and disease resistance.    We chose Italians that had overwintered in Massachusetts for their lack of aggressiveness, consistent ability to produce honey, and their likelihood of reproducing sufficiently to sustain a stable population in our orchard and meadow.

Our Guinea fowl enjoy eating bees, so we created an elevated platform using oak pallets that ensures the hive entrances are higher than guinea mouth height.

To begin our bee journey, we placed 4 "nucs" or nucleus hives in the orchard and 4 nucs in the meadow near the stream.   A nuc is a fully functional starter hive consisting of a laying queen and bees on frames of brood, honey and pollen.  Soon these frames will be transferred to standard Langstroth hives which consist of combs hung in vertical sheets for easy honey harvesting and bee care.

At the moment, the bees are staying close the their hives, circling to get oriented to their new home.   They're very gentle and will land on me as I approach the hive.   I've not been stung and expect that we'll have a great long term symbiotic relationship.   The apple trees are in full bloom and pollen/nectar is plentiful in the orchard.   Similarly, wildflowers are abundant in the meadow, so all 8 hives are buzzing with food gathering activity.

During our first year as beekeepers, we'll be guided by Noah Wilson-Rich, Ph.D, a behavioral ecologist, a beekeeper, and the founder of Boston’s Best Bees.

In 2014, we'll evaluate our progress and think about adding bee care to our weekly farm tasks.

Some will debate if beekeeping is vegan.   Since no bees are harmed and the quality of life of the bee is not changed in any way by beekeeping, I believe it is consistent with vegan ideals.   The same cannot be said about the dairy industry or factory farmed chickens producing eggs.   Honey is not secreted by bees, it's the product of nectar mixed with bee digestive enzymes.

I look forward to our first honey harvest and comparing the characteristics of orchard honey to meadow honey.

Documenting End of Life Care Preferences

Following up on yesterday's post about ICU dashboards, I think it is equally important to document end of life care preferences in the electronic health record.   The HIT Standards Committee has been charged in 2013 with developing the standards for structured data capture of end of life care preferences.

At BIDMC, we've already designed an approach in conjunction with the Institute for Healthcare Improvement's Conversation Ready project.

Conversation Ready is a collaborative effort between the Institute for Healthcare Improvement (IHI) and a handful of "pioneer" institutions, of which BIDMC is one, to ensure that we're ready to 1. receive/elicit patients' goals of care or preferences, 2. record them in our systems, 3. retrieve them when needed, and thereby 4. do a better job respecting them.

As a healthcare system, the US is not currently very good at doing these things, and there is a strong push to get better. To that end, it is one of BIDMC's Annual Operating Goals to become Conversation Ready, and we have a large team working to do this, which includes: the Senior VP for Quality Improvement, the Director of Ethics and Palliative Care Programs the Medical Director of Inpatient Quality, the Director of Performance Assessment & Regulatory Compliance, the Director of Social Work and Patient/Family Engagement, Patient Advisors, Associate Chief Nursing Officer of Ambulatory & Emergency Services, a Palliative Care and HCA Primary Care Physician, and several IT professionals.

A BIDMC hospitalist is the project director, and a BIDMC communications manager serves as the project manager.  We've been meeting for about 5 months now, and in addition to the IT solutions presented in these slides, we're collecting stories and data to motivate conversations, as well as developing training modules, scripts and other materials to improve our ability have these conversations.

The slides reflect the team's preliminary vision of how to improve the way we record patients' wishes around end-of-life care and retrieve them when needed.  We believe that becoming "conversation ready" requires a centralized place to store this information which is accessible from all our clinical applications.  The slides also outline a system for managing PDFs of paper Advance Care Planning documents (e.g. Proxy forms, Advance Care Directives, letters to family members, DNR/MOLST forms) that would enable us to effectively store, update and retrieve them as needed, thus capturing all the work and time that were put into creating those documents and enhancing our ability to best respect our patients wishes.  Ultimately we hope that this Advance Care Planning data could become part of health information exchanges to ensure a shared mental model across care settings.

Reflecting on my father's recent experience with end of life care, such an approach would have ensured his wishes were widely understood and respected.

I look forward to the project.

Patient and Family Engagement in ICUs

My father died 2 months ago and now with a bit of distance from that emotional event, it's time to further reflect on technology to support patients and families in ICUs.

BIDMC has been speaking with a major foundation about creating a cross-disciplinary, multi-institutional, open source application to turn critical care data into wisdom for patients and families.

How might it work?  Let me use my father as an example.

My father had multiple sclerosis for 23 years, myelodysplastic syndrome for 2 years, and 3 myocardial infarctions since 2009.

When I arrived at his ICU bedside in early March, I spoke with all his clinicians to create a mental dashboard of his progress.   It looked something like this

Cardiac - history of 2 previous myocardial infarctions treated with 5 stents.   New myocardial infarction resulting in apical hypokinesis and an ejection fraction of 25%.   No further stent placement possible, maximal medical therapy already given.  

Pulmonary - New congestive heart failure post recent myocardial infarction treated with diuretics, nitroglycerine drip, afterload reduction, upright position, and maximal oxygenation via bilevel positive airway pressure.  O2 saturation in the 90s and falling despite maximal therapy (other than intubation)

Hematologic - failing bone marrow resulting in a white count of 1, a platelet count of 30, and a hematocrit of 20

Neurologic - significant increase in muscle spasticity, resulting in constant agitation.   Pain medication requirements escalating.  Consciousness fading.

Renal - Creatinine rising

Although I did not have realtime access to his records, I gathered enough data from my conversations to turn this dashboard into a scorecard green, yellow and red indicators.

Cardiac - Red due to irreversible low ejection fraction

Pulmonary - Red due to the combination of falling O2 saturation despite aggressive therapy

Hematologic - Red due to lack of treatment options available for myelodysplastic syndrome and an inability to transfuse given the low ejection fraction and congestive heart failure

Neurologic - Yellow due to the potential for successful symptom control with pain medications

Renal - Yellow due to treatment options available for renal failure

My father had expressed his wishes in a durable power of attorney for healthcare - do not intubate, do not resuscitate, no pressors,  no feeding tubes, and no heroic measures.

From the combination of the dashboard, scorecard, and his end of life wishes, it was clear that hospice was the best course of action.

I'm a physician with 20 years of practice experience.   I'm a CIO with 30 years of data analysis experience.   I'm a decision maker with 35 years leading teams.

Making the hospice decision required all of my skills.

Ideally, patients and families should have the tools  needed to make such decisions regardless of their medical sophistication.

Our proposed project is an automated ICU dashboard/scorecard for patients and families updated in realtime based on data aggegrated from the medical record and patient connected telemetry.    The architecture will be a decision support web service , Hospitals send data in and the web service returns the wisdom of a graphical display.

The project is ambitious and will bring together patients, providers, and IT experts.    We look forward to the challenge of creating a patient and family friendly dashboard for ICUs.    My healthcare navigator service to my father would have been empowered with such a resource.

Blame Bunions on your Genes

Thanks to KM for sending a pic of her bunions (yes, genetic)



There is good news for women who love high heels and pointy toe shoes.  Contrary to what we've been told, they don't cause bunions.  A new study published in Arthritis Care & Research shows that bunions, hammer toes and other toe deformities can be blamed on your parents.  Yes, like so many disorders, it's all in the genes.

The

Building Unity Farm - The Mushroom Farm Begins

Last weekend, my wife Kathy, Bill Gillis (CIO of the Beth Israel Deaconess Care Organization), and I completed 72 Oyster mushroom totems and 60 Shitake logs - about 10,000 pounds of wood requiring 3000 individual inoculations.

Here's how we did it.

I cut 72 two foot segments of poplar, 8 to 16 inches in diameter, from the trees we felled behind the house in the early spring when sap was flowing but leaves had not yet emerged.   This wood has the maximum amount of moisture possible.   Over the weekend, we cut each log into 2 one foot pieces plus a thin third piece.   I purchased 6 sub-species of oyster mushroom spawn.   First, we poured about a cup of spawn into the bottom of a thick black trash bag.  We placed the first log segment on top of the spawn.   We then added another cupful on top of that log and placed another log on top of it.  Finally we added another cupful and placed the thin third piece on top.   We closed the bag with a rubber band and stored each completed "totem" in the shade of a pine grove.    We inoculated 12 totems for each species.  The end result of 72 totems stacked in the forest is pictured below.

 After Labor Day we'll remove the bags and enable the inoculated logs to fruit.   We'll get some Oyster mushrooms this Fall, but the bulk of our first harvest will arrive next Spring.

For Shitake, I cut 220 four foot oak logs between 4 and 12 inches in diameter when clearing land for the orchard.   They were also harvested for maximum moisture.   I purchased 11 sub-species of shitake mushroom spawn.  Over the weekend we placed a log in the wheels of the assembly line we designed, drilled 12mm holes 1.5 inches deep every 6 inches along the log, and repeated the pattern every 2 inches around the circumference.

We used inoculator tubes to place spawn in each hole, then sealed it with cheese wax heated to 400 degrees F.   We carried the finished logs to the shade house (85% shade cloth) and stacked them lincoln log style.

We have room for 11 stacks of 20 logs.   We did 60 last weekend and will do another 60 this weekend.     By the time we're done, we'll have drilled and filled 10,550 holes.

Next Spring we'll move the logs from stacks to leaning upright in the forest.  Like the Oyster mushrooms we may get some fruiting this Fall but the bulk will be next Spring.

These logs will produce for years to come and our hope is to start a mushroom community supported agriculture program (CSA) once we've proven our ability to produce large quantities of high quality mushrooms.

Making progress.

Personal Health Record Use by Adolescents

In response to many questions about PHR use by adolescents, I asked Fabienne Bourgeois, the expert at Children's Hospital Boston, to write this guest blog post -

As more and more practices and hospitals are making patient portals available to their patients, providers of adolescent patients are encountering a major hurdle: how to handle confidential adolescent information.

While adult patients generally maintain full personal control of their personal health record (PHR), adolescent PHRs are anything but personal.  Adolescents rarely have full control of their record, but instead rely on parents and guardians to share control.  The details around this shared access changes over time, depending on developmental and age-appropriate considerations, as well as guardianship arrangements.  

The biggest challenge then, becomes how to protect the adolescent’s legal right to privacy and confidentiality within this hyprid/proxy-control model.  Many medical encounters with adolescents come with the verbal assurance that what they tell us will (under most circumstances) remain entirely confidential, meaning we will not discuss personal health information pertaining to reproductive health, sexually transmitted diseases, substance abuse and mental health with their parents or anyone else without their consent.   As it turns out, this type of confidential information is pervasive through most EHRs.

We've spent a lot of time thinking about this issue and adolescent access to our patient portal, and ultimately developed a custom built solution to meet our and our patients’ needs.

Our approach is built around differential access to the patient portal with the goal of mirroring current clinical practice and works as follows:

Access to the patient portal: Separate accounts are created for the patient and parent(s) that are linked. The parent has sole access to the patient's portal until the patient turns 13, at which point both the parent and the patient can have access.  We chose 13 years as our cut off based on a number of factors, including developmental maturity and other precedents at our institution based on their policies.  At 18 years, the patient becomes the sole owner of the portal account, and we deactivate the parent's link (unless we receive court documents stating that the parent remains the medical guardian).

Health information contained in the patient portal: We have identified and tagged certain information from our EHR that we consider sensitive, such as labs related to pregnancy, sexually transmitted illnesses, genetic results, select confidential appointments, and potentially sensitive problems and medications. This information is currently filtered from both parent and adolescent accounts, but in the near future the sensitive information will flow to the adolescent account, but not to the parent account. So, even if a patient is less than 13 years, the parent would not have access to this information.
This solution does take a lot of time and effort, but best replicates the current clinical practice. Many other current PHR structures do not allow for this type of differential access and only enable full proxy access.

Alternative solutions include the following:
1.    Shared access for patient and parent, but filtering of sensitive information. One could then choose the age at which patients would gain access without worrying about the parent seeing sensitive information at any age. This makes the age at which the patient obtains access, whether it is 10 or 13 years, less important. Unfortunately, this option restricts adolescent access to confidential information and creates a fragmented and incomplete record.

2.       Adolescent access only. This is trickier, because choosing the appropriate age when parental access is discontinued is difficult and may vary depending on patient characteristics.  Many practices choose 12 or 13 years. However, if sensitive information is not being filtered, you may very well have the occasional 11 year old with an STI. Also, some parents object to being cut off from their child's medical information and many play an important role in supporting their adolescent children and guiding them through healthcare decisions.

The issues and solutions involved with adolescent PHRs are certainly complex and will continue to evolve over time. However, I am hopeful that PHRs will start incorporating the unique needs of the adolescent population in the near future, allowing both parents and adolescents to share responsibility and engage in their healthcare.

For additional information, see this publication

Bourgeois FC,  Taylor PL, Emans  SJ, Nigrin DJ, Mandl KD. Whose personal control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients  J. Am. Med. Inform. Assoc. 2008;15(6):737-743