This week, Kathy got tattooed. Under the watchful eye of radiation oncology experts, 5 alignment dots were place on her body (2 ribs, 2 center line, 1 at the left breast) to ensure that her radiation treatments are consistently positioned.
Last week, we visited with her radiation oncologist and consented to treatment over the next 7 weeks. He wrote
"RECOMMENDATIONS: The patient is an appropriate candidate for breast-conserving therapy, which is her preference. In view of the complete pathologic response in the breast, we feel it reasonable to give axillary radiation therapy for regional control rather than to use axillary dissection. I explained the risks and benefits of this treatment to the patient. She agreed to proceed with radiation therapy. She signed the departmental consent form, a copy of which I gave her. Arrangements for radiation treatment planning and start date have been made."
The tattoos are barely noticeable - the size of comma. They were applied by placing pigment on the skin followed by a single needle poke at each site. No fashion statement, no body piercing!
She begins her daily radiation therapy on June 14. There will be direct radiation to the area of her left breast at the original tumor site and to the left underarm where a single lymph node with micrometastatis was found.
Her numbness is slowly improving but her feet continue to hurt after a few hours running around the farm.
She also had a surgical followup appointment this morning. Her surgical outcome was so good that there is virtually no lasting evidence of the trauma her body has experienced over the past 6 months. As her radiation oncologist wrote
" The left breast has a well-healed circumareolar scar with some volume loss, postoperative induration, and edema. There are no suspicious masses or skin lesions. There is no arm edema, and range of motion is normal. "
At this point, her surgical treatment is done and she'll followup with her surgeon after a mammogram in 6 months to ensure all is well.
She'll followup with her Oncologist next month to begin a 5 year course of Tamoxifen (anti-estrogen, given that her tumor was estrogen sensitive)
With chemotherapy and surgery behind her, all that remains ahead is 7 weeks of radiation therapy, 5 years of anti-estrogens, and continued check in with her care team to ensure Kathy remains a cancer survivor for many years to come!
The Summer of Compliance
I was recently asked at a conference - "What is your most significant concern right now?" I answered "As a clinician and informatics leader, I worry about delivering care in the healthcare reform world of global capitation - we need to increase the value (quality/cost) of the services we provide. However, as a CIO, it's the mounting regulatory and compliance pressures that keep me up at night. They will require a level of resources and focus that will reshape my plans for the next year or more."
The compliance work we're kicking off this Summer includes:
*An enhanced encryption program to ensure all personal laptops/tablets that access hospital systems are encrypted.
*An enhanced mobile/BYOD program that ensures all personal smartphones that access hospital systems are password protected, have timeouts, and encrypted as technology permits
*An enhanced learning management infrastructure so that every person in the BIDMC ecosystem can be held accountable for completing training requirements, including security and compliance topics. Creating this infrastructure requires a new level of identity management that captures roles and characteristics for employees, volunteers, board members, and contract workers.
*Enhanced Conflict of Interest reporting including the management tools needed to followup on any disclosed conflicts
*A comprehensive audit of our security program and polices - where are we "standard practice" and where are we "best practice". What gaps do we need to close?
Earlier this week I submitted my capital requests for FY13 and over one third of my budget is for security and compliance related projects.
I've dubbed June 21-Sept 21, 2012 as the "Summer of Compliance". My hope is that we'll enter the Fall with reduced risks and a technology foundation that not only meets our regulatory needs but also further ensures we respect the privacy preferences of our patients.
The compliance work we're kicking off this Summer includes:
*An enhanced encryption program to ensure all personal laptops/tablets that access hospital systems are encrypted.
*An enhanced mobile/BYOD program that ensures all personal smartphones that access hospital systems are password protected, have timeouts, and encrypted as technology permits
*An enhanced learning management infrastructure so that every person in the BIDMC ecosystem can be held accountable for completing training requirements, including security and compliance topics. Creating this infrastructure requires a new level of identity management that captures roles and characteristics for employees, volunteers, board members, and contract workers.
*Enhanced Conflict of Interest reporting including the management tools needed to followup on any disclosed conflicts
*A comprehensive audit of our security program and polices - where are we "standard practice" and where are we "best practice". What gaps do we need to close?
Earlier this week I submitted my capital requests for FY13 and over one third of my budget is for security and compliance related projects.
I've dubbed June 21-Sept 21, 2012 as the "Summer of Compliance". My hope is that we'll enter the Fall with reduced risks and a technology foundation that not only meets our regulatory needs but also further ensures we respect the privacy preferences of our patients.
A Night at the NERD Center
Last evening, I spent 3 hours at the Microsoft New England Research and Development (NERD) Center, listening to the pitches of 5 entrepreneurs in an "American Idol" type setting as one of the judges.
The first presentation was from ASP.MD, which offers a low cost, full featured, software as a service practice management system and electronic health record. Today, they have 500 clinician clients (1800 users) and are profitable. They pioneered a thin client, software as a service, AJAX-enabled medical record that is highly configurable and available for less than $200/month. The presentation was impressive and the usability of the software looks very good. I was concerned about their ongoing support for paper-based workflows (ordering, scanning, printing, and routing documents), but they explained this as a transition strategy for late adopters of EHRs who are unwilling to start with completely electronic transactions.
The second presentation was from Soltrix Technolgy which has created tools for patient satisfaction measurement, turning PDF submissions intro structured data capture. My concern was that their presentation focused on the technology of forms creation and submission rather than the validation of customer satisfaction measurement instruments and the analytics necessary to ensure the data is interpretable.
The third presentation was from HomMed, a division of Honeywell. The presentation their LifeStream Remote Patient Care System for monitoring and tele health. Previously was visiting nurse, now chronic disease management (vitals, symptom, video) and tomorrow portfolio of monitoring devices/decision support/education. My comments included the need to target their sales model to emerging ACOs which are now responsible for wellness and continuous monitoring rather than encounter-based illness.
The fourth presentation was from Ambio Health, enabling the wireless home. Their product suite includes motion sensors that use passive infrared technology (not cameras) monitoring activities of daily living in the family room, kitchen, bedroom or bathroom. They also support physiologic monitoring devices such as blood pressure cuffs, glucose measurement, and scale interfaces. A family care portal charts the patient's activity and device data. The portal also includes reminders, a care circle (social networking for communication about health related concerns), goals/rewards (gamification) and alerts to caregivers. My advice was to focus their presentation more on the clinical "pull" (the value for providers, patients and families) and less on the technology.
The fifth presentation was from PrescribableApps, supporting mobile health - customized smartphone application for doctors to personalize patient engagement in chronic care treatment. Features include self monitoring via text messages with cloud analytics and provider feedback. Studies (Group Health) demonstrated that 80% of patients in weekly communication with the care team had medication changed within 60 days verses 15% in usual treatment. My advice was to ensure that there is a more clearly stated value proposition for patients.
A great evening and an opportunity to share lessons learned in front line clinical practice with companies developing new products and services.
The first presentation was from ASP.MD, which offers a low cost, full featured, software as a service practice management system and electronic health record. Today, they have 500 clinician clients (1800 users) and are profitable. They pioneered a thin client, software as a service, AJAX-enabled medical record that is highly configurable and available for less than $200/month. The presentation was impressive and the usability of the software looks very good. I was concerned about their ongoing support for paper-based workflows (ordering, scanning, printing, and routing documents), but they explained this as a transition strategy for late adopters of EHRs who are unwilling to start with completely electronic transactions.
The second presentation was from Soltrix Technolgy which has created tools for patient satisfaction measurement, turning PDF submissions intro structured data capture. My concern was that their presentation focused on the technology of forms creation and submission rather than the validation of customer satisfaction measurement instruments and the analytics necessary to ensure the data is interpretable.
The third presentation was from HomMed, a division of Honeywell. The presentation their LifeStream Remote Patient Care System for monitoring and tele health. Previously was visiting nurse, now chronic disease management (vitals, symptom, video) and tomorrow portfolio of monitoring devices/decision support/education. My comments included the need to target their sales model to emerging ACOs which are now responsible for wellness and continuous monitoring rather than encounter-based illness.
The fourth presentation was from Ambio Health, enabling the wireless home. Their product suite includes motion sensors that use passive infrared technology (not cameras) monitoring activities of daily living in the family room, kitchen, bedroom or bathroom. They also support physiologic monitoring devices such as blood pressure cuffs, glucose measurement, and scale interfaces. A family care portal charts the patient's activity and device data. The portal also includes reminders, a care circle (social networking for communication about health related concerns), goals/rewards (gamification) and alerts to caregivers. My advice was to focus their presentation more on the clinical "pull" (the value for providers, patients and families) and less on the technology.
The fifth presentation was from PrescribableApps, supporting mobile health - customized smartphone application for doctors to personalize patient engagement in chronic care treatment. Features include self monitoring via text messages with cloud analytics and provider feedback. Studies (Group Health) demonstrated that 80% of patients in weekly communication with the care team had medication changed within 60 days verses 15% in usual treatment. My advice was to ensure that there is a more clearly stated value proposition for patients.
A great evening and an opportunity to share lessons learned in front line clinical practice with companies developing new products and services.
Living Things First
I recently posted a blog about the experience of moving. The chaos of uprooting your household, changing your lifestyle, and disrupting your daily patterns can break your cadence. As you may have noticed last week, my blog posts were a bit delayed. My usual evening writing time was devoted to supporting my family and the living creatures on our farm as we continue to unpack and transition from suburban life in Wellesley to rural life in Sherborn, MA.
When I'm feeding the chickens, turning the compost, and repairing fences on nights and weekends, I've realized there are lessons learned for my work life.
Like so many things in the lifestyle that is being a CIO, it's all about triage. What must be done now? What can wait? How can you benefit the greatest number while doing the least harm?
I suggest focusing on living things first.
What does that mean?
When a plant needs water, time is of the essence. At some point, the plant will be so stressed that no amount of water can save it.
When a young animal is hungry and cold, it can begin to fade, exhausting its minimal reserves.
Similarly, the people in our work lives need our support and attention.
Budgets, strategic plans, policymaking, interviews, and innovation can wait. Patients, employees, and colleagues with urgent issues should not.
When I scan my email, I look for those issues that involve the well-being of the people I serve. Some of those emails ask for urgent help with challenging political issues. Some express anxiety or anticipation about upcoming meetings, complex projects, or new regulations.
I vow never to be the rate limiting step for people issues (or supporting any living thing). I'll rapidly respond with my best answer, even if a complete answer will take a few days to research. It's far easier to defuse an emotional situation or steer events back on course by acting rapidly instead of waiting for the situation to get worse.
As an emergency physician, I often make decisions with incomplete information and need to tolerate ambiguity. Focusing on the living things and keeping them stable in the golden hours when problems are still minor creates ample time for addressing less urgent issues when time permits.
Every ten years I reinvent my lifestyle - from entrepreneur, to winemaker, to Japanese flute player, to alpinist, and now to farmer. I expect the lessons learned from the farm over the new few years will make me a better technology leader. Even the few short weeks tending the chickens (photo of the coop we built is above) has given me the perspective of the importance of serving living things first.
Our Cancer Journey Week 24
Although I typically publish an update about our Cancer Journey on Thursdays, I'm publishing it on Friday because Kathy's radiation oncology planning meeting was scheduled for today.
As I noted last week, although she is in complete remission after chemotherapy and surgery, the reason for radiation therapy is to reduce the risk of breast cancer recurrence.
She'll receive radiation to the area of the left breast at the site of the original tumor as well as radiation to the axillary lymph node that showed micro-metastasis. On June 6, they'll complete the simulation, including placing small tattoos on her body to ensure consistent alignment of the equipment. On June 14, she'll begin treatment and continue with daily dosing 5 days a week until she completes 33 doses.
Accounting for vacations or scheduling issues, she should be done by August 1.
As part of her planning meeting, we reviewed all the risks and benefits of radiation therapy. Common short term reactions include redness/pain at the site of therapy (similar to a sunburn), skin darkening, tiredness, temporarily hair loss under the arm, and fleeting aches/pains in the breast. Uncommon short term reactions include skin blistering and low blood count. Common long term reactions include discomfort of the treated area, swelling, and skin changes. Uncommon/rare long term reactions include rib fractures, lung inflammation, nerve damage, inflammation of the lining of the heart (which is under the left breast), and tumors caused by radiation.
We signed the consent based on the great benefits (up to 60% reduction in recurrence likelihood) and acceptable common risks.
Kathy continues to do well - her hair is growing back, her energy is returning, and her neuropathy is improving. The numbness in her fingers is now pins/needles, and her feet hurt but she can complete all her planned activities without requiring pain medication.
For 20 years I've joked with Kathy that she should get a tattoo. Next week she gets several small ones (alignment dots). Not exactly edgy artwork nor the tattoos that we ever speculated she would get. However, they will be a lasting memory of our cancer journey and ensure her radiation dosing will be accurately targeted.
As I noted last week, although she is in complete remission after chemotherapy and surgery, the reason for radiation therapy is to reduce the risk of breast cancer recurrence.
She'll receive radiation to the area of the left breast at the site of the original tumor as well as radiation to the axillary lymph node that showed micro-metastasis. On June 6, they'll complete the simulation, including placing small tattoos on her body to ensure consistent alignment of the equipment. On June 14, she'll begin treatment and continue with daily dosing 5 days a week until she completes 33 doses.
Accounting for vacations or scheduling issues, she should be done by August 1.
As part of her planning meeting, we reviewed all the risks and benefits of radiation therapy. Common short term reactions include redness/pain at the site of therapy (similar to a sunburn), skin darkening, tiredness, temporarily hair loss under the arm, and fleeting aches/pains in the breast. Uncommon short term reactions include skin blistering and low blood count. Common long term reactions include discomfort of the treated area, swelling, and skin changes. Uncommon/rare long term reactions include rib fractures, lung inflammation, nerve damage, inflammation of the lining of the heart (which is under the left breast), and tumors caused by radiation.
We signed the consent based on the great benefits (up to 60% reduction in recurrence likelihood) and acceptable common risks.
Kathy continues to do well - her hair is growing back, her energy is returning, and her neuropathy is improving. The numbness in her fingers is now pins/needles, and her feet hurt but she can complete all her planned activities without requiring pain medication.
For 20 years I've joked with Kathy that she should get a tattoo. Next week she gets several small ones (alignment dots). Not exactly edgy artwork nor the tattoos that we ever speculated she would get. However, they will be a lasting memory of our cancer journey and ensure her radiation dosing will be accurately targeted.
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