Kathy is now finished with the hardest part of her chemotherapy regimen, Adriamycin/Cytoxan. Next week, she begins Taxol every week for the next 12 weeks. Taxol is typically far less fatiguing than AC. It does have a problem that it is suspended in an solvent that can cause allergic reactions. Her regimen will include supportive doses of diphenhydramine (benadryl) and dexamethasone (a steroid).
At last week's checkup, Kathy's oncologist could no longer locate the tumor.
Her breast surgeon will order an MRI at the completion of the Taxol cycles and if the tumor is undetectable, Kathy may be able to have to breast conserving surgery rather than a complete mastectomy.
On Taxol, her hair will begin to grow back and her energy is likely to rebound. However, she is quite concerned about one side effect - a neuropathy causing numbness in her hands. As an artist, she depends on a keen sense of touch to create her work.
She will no longer need Neulasta (a bone marrow stimulant). She welcome the fact that Neulasta protected her from neutropenic nadirs/infections but really did not like the bone pain/total body aches that it caused.
So the journey continues and we feel that we've turned the corner. It's too early to see the light at the end of the tunnel, but at least the tunnel will be easier to traverse for he next 12 weeks.
Thursday, February 23, 2012
Wednesday, February 22, 2012
Lessons Learned from China
On Sunday I returned from a week in Shanghai and Hangzhou. A remarkable trip that included daily meetings with government, academic, and clinical leaders. What did I learn?
In China, about 5% of the GDP is spent on healthcare per year compared to 16% in the US. Although there is wide variation in lifespan and other population health measures between rural and urban settings, there are few interesting observations about Chinese healthcare
*It's a single payer, publicly funded system that provides universal healthcare via a 14% payroll tax.
*There is a single national set of regulations and policies applied to all hospitals, clinics, and doctors
*There is a single set of national privacy laws
*Immunization is mandatory for the entire population
*There's a single national healthcare identifier
EHRs are widely used in China, however they are optimized for episodes of care, using templates for capture of selected data elements specific to a disease i.e. hypertension, hepatitis, diabetes. The volume of patients is overwhelming - in one hospital I visited (Huashan), the dermatology clinic sees 4000 patients per day. The Chinese EHR enables clinics to document the basics of a problem specific encounter, facilitating extremely fast throughput. The downside of this is that there is not a longitudinal problem list, medication reconciliation, or coordination of care to avoid repeat testing.
Health Information Exchanges are beginning and in Shanghai and there's a pilot in place which enables data sharing among the public hospitals. The Chinese have designed an architecture to support HIE in cities, provinces, and across the country. The idea is similar to the US NwHIN - a network of networks that shares detailed data on a local level and summary data on a national level.
The Standards for HIE are in the early stage and I have shared the US approach to the Consolidated CDA. The Chinese believe that using building blocks of XML to specify aspects of the record for transition of care is exactly what they need.
I travel the world and over the past year I've worked on aspects of HIE in Japan, Scotland, New Zealand, Europe, and China. The problems are the same all over - capturing the data, protecting privacy, creating standards-based summaries, embracing vocabularies, and providing decision support. It's encouraging to see such progress. In my lifetime, I believe we will achieve a level of healthcare data capture and sharing that enables us to improve healthcare quality, safety, and efficiency throughout the world. We'll solve these problems, so that the next generation will reap the benefits.
In China, about 5% of the GDP is spent on healthcare per year compared to 16% in the US. Although there is wide variation in lifespan and other population health measures between rural and urban settings, there are few interesting observations about Chinese healthcare
*It's a single payer, publicly funded system that provides universal healthcare via a 14% payroll tax.
*There is a single national set of regulations and policies applied to all hospitals, clinics, and doctors
*There is a single set of national privacy laws
*Immunization is mandatory for the entire population
*There's a single national healthcare identifier
EHRs are widely used in China, however they are optimized for episodes of care, using templates for capture of selected data elements specific to a disease i.e. hypertension, hepatitis, diabetes. The volume of patients is overwhelming - in one hospital I visited (Huashan), the dermatology clinic sees 4000 patients per day. The Chinese EHR enables clinics to document the basics of a problem specific encounter, facilitating extremely fast throughput. The downside of this is that there is not a longitudinal problem list, medication reconciliation, or coordination of care to avoid repeat testing.
Health Information Exchanges are beginning and in Shanghai and there's a pilot in place which enables data sharing among the public hospitals. The Chinese have designed an architecture to support HIE in cities, provinces, and across the country. The idea is similar to the US NwHIN - a network of networks that shares detailed data on a local level and summary data on a national level.
The Standards for HIE are in the early stage and I have shared the US approach to the Consolidated CDA. The Chinese believe that using building blocks of XML to specify aspects of the record for transition of care is exactly what they need.
I travel the world and over the past year I've worked on aspects of HIE in Japan, Scotland, New Zealand, Europe, and China. The problems are the same all over - capturing the data, protecting privacy, creating standards-based summaries, embracing vocabularies, and providing decision support. It's encouraging to see such progress. In my lifetime, I believe we will achieve a level of healthcare data capture and sharing that enables us to improve healthcare quality, safety, and efficiency throughout the world. We'll solve these problems, so that the next generation will reap the benefits.
Tuesday, February 21, 2012
HIE Consent Policy
I was recently asked how consent policy can evolve in Massachusetts to balance patient privacy preferences and the need to coordinate care/optimize population health. Here's the letter I wrote to stakeholders about it:
"My name is John D. Halamka MD and I serve as chief information officer of Beth Israel Deaconess Medical Center, co-chair of the Massachusetts HIT/HIE Advisory Committee, and co-chair of the HIT Standards Committee.
In my role as a CIO and clinician, I have been passionate about the need to electronically coordinate care to improve quality, safety, and efficiency.
My wife was recently diagnosed with Breast Cancer and her treatment has relied on the secure exchange of healthcare records with her consent.
The consent model that has worked best throughout the Commonwealth is 'Opt in consent to disclose at each institution'. This means that no data is exchanged between organizations until the patient consents to the release of information from the sending institution (the place where the data was generated). This consent stays in force until a patient revokes it.
A separate consent to view the data at the receiving institution is not needed. There is no need to re-consent the patient at each episode of care.
We've implemented this model in the New England Healthcare Exchange Network (NEHEN), in the Department of Public Health immunization registry, and in the design of the statewide healthcare data exchange that the MassHealth is building.
Opt in to disclose is straightforward to implement and support. It's easy to enforce and audit.
The one complexity to this approach is the data sharing of records containing HIV information. Current and proposed Massachusetts regulations require opt in consent to view at each episode of care in addition to opt in consent to disclose.
Consenting the patient at each release of information is challenging to implement, difficult to audit, and likely impossible to enforce. Security experts agree that easy to implement, easy to audit, enforceable approaches are much more secure than complex, challenging and cumbersome approaches.
I believe that Massachusetts stakeholders will support opt in consent to disclose at each institution as the single best approach for the release of all healthcare data. Implementing this uniformly across the Commonwealth will ensure respect for patient privacy is maintained, care delivery organizations can support healthcare data exchange processes, and IT departments can implement the necessary applications.
As a CIO, physician, and husband of a cancer patient, I highly recommend we consider this simplification of current regulation and legislation.
Sincerely,
John D. Halamka MD"
Privacy protection will always be a journey, but we need to start somewhere and I hope my comments above seem reasonable.
"My name is John D. Halamka MD and I serve as chief information officer of Beth Israel Deaconess Medical Center, co-chair of the Massachusetts HIT/HIE Advisory Committee, and co-chair of the HIT Standards Committee.
In my role as a CIO and clinician, I have been passionate about the need to electronically coordinate care to improve quality, safety, and efficiency.
My wife was recently diagnosed with Breast Cancer and her treatment has relied on the secure exchange of healthcare records with her consent.
The consent model that has worked best throughout the Commonwealth is 'Opt in consent to disclose at each institution'. This means that no data is exchanged between organizations until the patient consents to the release of information from the sending institution (the place where the data was generated). This consent stays in force until a patient revokes it.
A separate consent to view the data at the receiving institution is not needed. There is no need to re-consent the patient at each episode of care.
We've implemented this model in the New England Healthcare Exchange Network (NEHEN), in the Department of Public Health immunization registry, and in the design of the statewide healthcare data exchange that the MassHealth is building.
Opt in to disclose is straightforward to implement and support. It's easy to enforce and audit.
The one complexity to this approach is the data sharing of records containing HIV information. Current and proposed Massachusetts regulations require opt in consent to view at each episode of care in addition to opt in consent to disclose.
Consenting the patient at each release of information is challenging to implement, difficult to audit, and likely impossible to enforce. Security experts agree that easy to implement, easy to audit, enforceable approaches are much more secure than complex, challenging and cumbersome approaches.
I believe that Massachusetts stakeholders will support opt in consent to disclose at each institution as the single best approach for the release of all healthcare data. Implementing this uniformly across the Commonwealth will ensure respect for patient privacy is maintained, care delivery organizations can support healthcare data exchange processes, and IT departments can implement the necessary applications.
As a CIO, physician, and husband of a cancer patient, I highly recommend we consider this simplification of current regulation and legislation.
Sincerely,
John D. Halamka MD"
Privacy protection will always be a journey, but we need to start somewhere and I hope my comments above seem reasonable.
Friday, February 17, 2012
Cool Technology of the Week
I've recently been asked how healthcare information exchange can simplify compliance processes such as the delivery of electronic summaries, instead of thousands of sheets of paper, to CMS in support of audits.
I've described the ONC Standards and Interoperability Framework (S&I) process several times previously in my blog. S&I convenes stakeholders to assemble new implementation guides and do technical work to polish existing standards. The HIT Standards Committee makes recommendations and evaluates standards implementation, but does not create implementation guides.
The S&I Framework Electronic Submission of Medical Documentation (ESMD) project supports the CMS vision for automating audit processes.
The S&I ESMD workgroup continues to work on the implementation guides which support the exchange of the relevant data from hospitalizations that would replace the paper-based audits of today. I'm guessing they will choose the Consolidated CDA (CCDA) standard that was developed by consensus for transitions of care.
A single, template-based standard for communication of clinical details to clinicians and a replacement for paper-based CMS auditing processes. ESMD and CCDA are definitely cool!
I've described the ONC Standards and Interoperability Framework (S&I) process several times previously in my blog. S&I convenes stakeholders to assemble new implementation guides and do technical work to polish existing standards. The HIT Standards Committee makes recommendations and evaluates standards implementation, but does not create implementation guides.
The S&I Framework Electronic Submission of Medical Documentation (ESMD) project supports the CMS vision for automating audit processes.
The S&I ESMD workgroup continues to work on the implementation guides which support the exchange of the relevant data from hospitalizations that would replace the paper-based audits of today. I'm guessing they will choose the Consolidated CDA (CCDA) standard that was developed by consensus for transitions of care.
A single, template-based standard for communication of clinical details to clinicians and a replacement for paper-based CMS auditing processes. ESMD and CCDA are definitely cool!
Thursday, February 16, 2012
Our Cancer Journey - Week 9
My travel in China was timed for Kathy's good days, the end of one chemotherapy cycle and the beginning of the next. She's had a busy week, with a visit to her surgeon (check in after 6 weeks of chemotherapy), her last cycle of Adriamycin/Cytoxan, and continuing our farm search as new properties begin coming onto the market in the Spring.
As I mentioned last week, I knew that traveling would make me uneasy. I made a commitment to friends and colleagues over a year ago. Backing out would impact the plans of many people who had agreed to 5 days of meetings in Shanghai as part of an effort to share US lessons learned in care processes and technology. With Kathy's consent and perfect timing, I did the trip.
Kathy's support system includes her father, several fellow cancer survivors, and our next door neighbor, who is a heme/onc nurse from Dana Farber with 35 years of experience. Our next door neighbor was very interested in visiting old friends at BIDMC and volunteered to take Kathy to cycle 4 of chemotherapy tomorrow in my absence.
I'll return by Sunday night just as the effects of chemotherapy are beginning.
Kathy's doing well. Before I left, her left breast was examined and the tumor that was very pronounced a few weeks ago, could no longer be found on palpation. It's clearly responding well to the chemotherapy.
We confirmed this week what we had expected, chemotherapy has induced chemical menopause. Thus far, no hot flashes, mood changes, or sleep disturbances.
We're staying in touch by email. I have a generous international roaming data plan while traveling. Kathy's putting all her energy in the farm search, which is very therapeutic for both of us.
This will be my only overnight travel without her during chemotherapy. She'll join me for my April keynote in San Francisco and a May keynote in Vancouver. There are a few same day Washington and Chicago trips but those will not conflict with her treatments or her low energy days.
Care at a Distance is emotionally challenging - I want to be home and focused on Kathy. Our emails, her support system, and a mutual shared project to create a life beyond a 5 year survival statistic give us both comfort that all will be well.
As I mentioned last week, I knew that traveling would make me uneasy. I made a commitment to friends and colleagues over a year ago. Backing out would impact the plans of many people who had agreed to 5 days of meetings in Shanghai as part of an effort to share US lessons learned in care processes and technology. With Kathy's consent and perfect timing, I did the trip.
Kathy's support system includes her father, several fellow cancer survivors, and our next door neighbor, who is a heme/onc nurse from Dana Farber with 35 years of experience. Our next door neighbor was very interested in visiting old friends at BIDMC and volunteered to take Kathy to cycle 4 of chemotherapy tomorrow in my absence.
I'll return by Sunday night just as the effects of chemotherapy are beginning.
Kathy's doing well. Before I left, her left breast was examined and the tumor that was very pronounced a few weeks ago, could no longer be found on palpation. It's clearly responding well to the chemotherapy.
We confirmed this week what we had expected, chemotherapy has induced chemical menopause. Thus far, no hot flashes, mood changes, or sleep disturbances.
We're staying in touch by email. I have a generous international roaming data plan while traveling. Kathy's putting all her energy in the farm search, which is very therapeutic for both of us.
This will be my only overnight travel without her during chemotherapy. She'll join me for my April keynote in San Francisco and a May keynote in Vancouver. There are a few same day Washington and Chicago trips but those will not conflict with her treatments or her low energy days.
Care at a Distance is emotionally challenging - I want to be home and focused on Kathy. Our emails, her support system, and a mutual shared project to create a life beyond a 5 year survival statistic give us both comfort that all will be well.
Wednesday, February 15, 2012
Dispatch from China
Our team of 4 (Dr. Mitch Rabkin, Mt. Auburn hospital CEO Jeanette Clough, Architect Martha Rothman and I) flew to China February 12-13, losing 24 hours because of the international date line and 18 hours of flying. We're staying in the eastern area of Shanghai, called Pudong, home to the economic miracle of the past 20 years - more skyscrapers than any other municipality in the world.
On February 14, we visited Huashan Hospital, a major teaching affiliate of Fudan University Medical School. We learned a great deal about leading practices in China, specifically in the areas of neurology, neurosurgery, and infectious disease. Huashan leads the country in many ways, but not in IT, since it only invests .8% of its operating budget in clinical applications and infrastructure supporting the healthcare process. It's at a HIMSS Level 1 adoption level, but very committed to accelerating its progress. In the afternoon, we keynoted a conference of all the hospital CEOs in Shanghai at the International Convention Center, Yellow River Hall. We were introduced by Dr. Chen, former director, Shanghai Municipal Health Bureau, now head of the Shanghai Hospital Association and Dr. Jianguang Xu, Director General of the Shanghai Municipal Health Bureau. The audience was very receptive to our comments about process improvement, patient centered care, accountable care organizations, LEAN improvement projects, and the importance of IT as a tool to facilitate these activities.
On February 15, we visited clinics and hospitals to better understand the emerging plans and infrastructure supporting healthcare in Shanghai.
On February 16, we've traveling to Hangzhou to offer advice to a team building a new hospital.
On Friday and Saturday we're advising healthcare leaders from Hong Kong before flying back to the US.
Every country, culture, and society has its own approach to healthcare. China currently spends 5% of its gross domestic product on healthcare compared to 17% in the US. In some ways China has fewer policy and technology barriers than the US because there are no state laws - just a single set of federal guidelines covering privacy, healthcare delivery, and IT. Shanghai mandated the use of a single electronic record across its public hospitals. It has mandated common standards and processes for medication exchange across the community. If Dr. Xu develops a strategy, all hospital CEOs will follow it.
I look forward to our continued work with Chinese healthcare leaders. The quality, safety, and efficiency challenges in China are similar all over the world and the lessons learned from Meaningful Use and Healthcare Reform will assist China while also ensuring they avoid our mistakes.
Tuesday, February 14, 2012
The Perfect EHR
I support over 3000 clinicians in heterogeneous sites of care - solo practitioners, small offices, multi-specialty facilities, community hospitals, academic medical centers, and large group practices.
In every location there is some level of dissatisfaction with their EHR. Complaints about usability, speed of documentation, training, performance, and personalization limitations are typical. Most interesting is that users believe the grass will be greener by selecting another EHR.
I've heard from GE users who want Allscripts, eClinicalworks users who want Epic, Allscripts users who want AthenaHealth, and NextGen users who want eClinicalWorks.
The bottom line from every product I've used and everyone I've spoken with is that there is no current "perfect" EHR. We're still very early in the EHR maturity lifecycle.
What is the perfect EHR? I've written about my best thinking, which has been incorporated into the BIDMC home built record, webOMR. (and has dissatisfied users too)
However, after listening to many "grass is greener" stories, I believe that what a provider perceives as a better EHR often represents trade offs in functionality. One EHR may have better prescribing functionality while another has better letters, another is more integrated and another has better support. The "best" EHRs, according to providers, varies by what is most important to that individual provider/practice, which may not be consistent with enterprise goals or the needs of an Accountable Care Organization.
My experience is that organizations which have given clinicians complete freedom of EHR choice now have an unintegrated melange of different products that make care standardization impossible.
My advice - pick an EHR for your enterprise that meets your strategic goals, providing the greatest good for the greatest number. Apply a maximum effort to training, education, sharing of lessons learned, user engagement, and healthcare information exchange.
There will always be dissatisfaction and a claim that something is better. However, I've never seen a change in product fix workflow and process issues. BIDMC's strategy is to do our best to ensure providers are educated and use their EHR optimally. I do not believe that there is a better choice than our current mix of built and bought products that makes sense for our pioneer ACO and individual providers within the organization.
In every location there is some level of dissatisfaction with their EHR. Complaints about usability, speed of documentation, training, performance, and personalization limitations are typical. Most interesting is that users believe the grass will be greener by selecting another EHR.
I've heard from GE users who want Allscripts, eClinicalworks users who want Epic, Allscripts users who want AthenaHealth, and NextGen users who want eClinicalWorks.
The bottom line from every product I've used and everyone I've spoken with is that there is no current "perfect" EHR. We're still very early in the EHR maturity lifecycle.
What is the perfect EHR? I've written about my best thinking, which has been incorporated into the BIDMC home built record, webOMR. (and has dissatisfied users too)
However, after listening to many "grass is greener" stories, I believe that what a provider perceives as a better EHR often represents trade offs in functionality. One EHR may have better prescribing functionality while another has better letters, another is more integrated and another has better support. The "best" EHRs, according to providers, varies by what is most important to that individual provider/practice, which may not be consistent with enterprise goals or the needs of an Accountable Care Organization.
My experience is that organizations which have given clinicians complete freedom of EHR choice now have an unintegrated melange of different products that make care standardization impossible.
My advice - pick an EHR for your enterprise that meets your strategic goals, providing the greatest good for the greatest number. Apply a maximum effort to training, education, sharing of lessons learned, user engagement, and healthcare information exchange.
There will always be dissatisfaction and a claim that something is better. However, I've never seen a change in product fix workflow and process issues. BIDMC's strategy is to do our best to ensure providers are educated and use their EHR optimally. I do not believe that there is a better choice than our current mix of built and bought products that makes sense for our pioneer ACO and individual providers within the organization.
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