Happy Thanksgiving from Unity Farm!
A new pig has joined the herd - Lunchbox. He’s 3 years old and has a remarkable personality. He loves humans and is very good with children. We’re gradually introducing him to Hazel and Tofu through a livestock fence. In a week or so, we’ll bring them together snout to snout once they have had the opportunity to learn each other’s smells and temperament. Creating harmony in a pig herd is an art form and there’s a great deal of literature about it. We’re seeing the expected behaviors - grunting/chewing, side stepping, and a bit of mouth foaming.
Here’s a photo of the pigs enjoying an organic Unity Farm pumpkin together on either side of a fence.
We’ve continuing to prepare the land between the Farm and the Sanctuary with new trails and roads. We’ve chipped all our old mushroom logs to create a base for new trails. The Sanctuary Road and Coyote Run are finished. We’ll work on the Pond Trail and Pine Loop once we take ownership of the Sanctuary property in December.
Kathy’s vision is to create large paddocks in the forest between the two properties over the next few years so that we’ll eventually have a much larger animal rescue capacity.
All of this takes careful consideration of how all the creatures will interact in a community, ensuring we have the time and resources to offer each an enriching life.
For the moment, we’re planning to add two donkeys, two ponies, and a horse. Although Kathy and I had significant horse experience as teens, that was 40 years ago. We’re comfortable around all barnyard animals, but we're not experts in equine care.
Choosing which animals to take on requires that we stay focused on our goals. Here’s what Kathy wrote to the adoption specialist who we’re working with at the MSPCA Nevins Farm:
“The mission of the Sanctuary is focused on rescue and education. Three experienced program advisors to our project will make sure we do not take on more than we can handle with respect to health, fitness, and behavior of the various animals.
I have two good friends who are experienced current horse riders who will volunteer at our sanctuary. My personal focus is not riding-readiness. Temperament is important because we want leading and grooming to be educational options.”
We continue to study all the possibilities and likely we’ll soon take on two Welsh Ponies who will retire to the Sanctuary and be companions to each other.
This weekend we'll visit a rescue horse in Southern Massachusetts. We're learning a lot about thoroughbreds, quarter horses, standard breds, arabians and Morgans as we expand our scope to include a more diverse array of inhabitants at Unity Farm.
As president of the Mayo Clinic Platform, I lead a portfolio of new digital platform businesses focused on transforming health by leveraging artificial intelligence, the internet of things, and an ecosystem of partners for Mayo Clinic. This is made possible by an extraordinary team of people at Mayo and collaborators worldwide. This blog will document their story.
Thursday, November 24, 2016
Wednesday, November 23, 2016
The BIDMC CareKit app
The following is a guest blog post from Seth Berkowitz, MD, who authors many of the innovative apps in the BIDMC Crowdsourcing program:
Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School, has developed BIDMC@home, a new app for engaging patients using Apple’s CareKit and ResearchKit frameworks and the HealthKit API. The app provides a flexible framework to help patients manage their health from home, as directed by their physicians. The app will be piloted in several specific patient populations and will eventually be offered to BIDMC’s entire network of over 250,000 patients.
BIDMC@home provides personalized home monitoring in many different conditions. HealthKit allows the app to collect data from various sensors and 3rd party apps to gain a holistic picture of health and help prevent hospital readmissions. Together with HealthKit-enabled wireless devices such as scales and blood pressure cuffs, patients with congestive heart failure can use BIDMC@Home to monitor vital signs and symptoms. Daily fluid, sodium intake and important predictors of fluid retention, can also be imported via HealthKit. Connected thermometers allow patients with autoimmune diseases such as lupus and rheumatoid arthritis to better predict infections and monitor inflammation. Outpatient chemotherapy is associated with varied symptoms and side effects. The app allows these patients to better monitor their health during treatment.
BIDMC@Home simplifies complicated post-operative instructions given to patients after orthopedic surgery by utilizing the dynamic care card and allowing them to track their recovery. Major bowel surgery can place patients at risk of severe dehydration. Connected scales and electronic patient reported outcomes will help prevent complications in these patients in between visits to the doctor’s office.
The app contains several key functions:
Care Card:
Every patient has a customized care plan that is seamlessly synced from the electronic medical record via FHIR interfaces. All outpatient medications are listed and updated in real time when a provider makes a change. Patients are encouraged to adhere to their prescribed medication regimen and can also track their intake of “as needed” medications. Providers can also define a care plan for non-medication activities, such as: diet, exercise, sleep or other instructions tailored to their individual care.
An essential part of staying healthy is the plan and thought process laid out in the health care providers’ notes. All too often these are hidden in the silos of individual electronic health record systems. BIDMC@home harnesses the capabilities of the Health app in iOS 10 to serve as a secure, patient controlled, shareable database of medical records. Under the umbrella of the Open Notes initiative pioneered at BIDMC, patients will be able to view and download their physician’s notes from BIDMC, transforming their phones into true personalized health records.
Assessments:
As part of each patient’s individualized care plan, he/she is prompted to provide subjective and objective data to monitor health. These data include values that are synced via HealthKit from connected sensors or other apps (e.g. weight, blood pressure, heart rate, temperature, daily sodium intake) and subjective assessments. Using the ResearchKit framework, the app collects meaningful patient reported outcomes using simple questions (e.g. shortness of breath on a 0-10 scale) or more elaborate validated survey instruments.
Insights:
To empower patients to take control of their own care, the app provides a dynamic graphing engine so that patients can see the relationship between measurements, medication adherence, or amount of “as needed” medications taken and the direct results. By reinforcing the relationship between treatment and outcome, we hope to reinforce positive behaviors and improve treatment compliance.
Connect:
The app syncs with our secure messaging system and allows patients to quickly contact their care team members.
Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School, has developed BIDMC@home, a new app for engaging patients using Apple’s CareKit and ResearchKit frameworks and the HealthKit API. The app provides a flexible framework to help patients manage their health from home, as directed by their physicians. The app will be piloted in several specific patient populations and will eventually be offered to BIDMC’s entire network of over 250,000 patients.
BIDMC@home provides personalized home monitoring in many different conditions. HealthKit allows the app to collect data from various sensors and 3rd party apps to gain a holistic picture of health and help prevent hospital readmissions. Together with HealthKit-enabled wireless devices such as scales and blood pressure cuffs, patients with congestive heart failure can use BIDMC@Home to monitor vital signs and symptoms. Daily fluid, sodium intake and important predictors of fluid retention, can also be imported via HealthKit. Connected thermometers allow patients with autoimmune diseases such as lupus and rheumatoid arthritis to better predict infections and monitor inflammation. Outpatient chemotherapy is associated with varied symptoms and side effects. The app allows these patients to better monitor their health during treatment.
BIDMC@Home simplifies complicated post-operative instructions given to patients after orthopedic surgery by utilizing the dynamic care card and allowing them to track their recovery. Major bowel surgery can place patients at risk of severe dehydration. Connected scales and electronic patient reported outcomes will help prevent complications in these patients in between visits to the doctor’s office.
The app contains several key functions:
Care Card:
Every patient has a customized care plan that is seamlessly synced from the electronic medical record via FHIR interfaces. All outpatient medications are listed and updated in real time when a provider makes a change. Patients are encouraged to adhere to their prescribed medication regimen and can also track their intake of “as needed” medications. Providers can also define a care plan for non-medication activities, such as: diet, exercise, sleep or other instructions tailored to their individual care.
An essential part of staying healthy is the plan and thought process laid out in the health care providers’ notes. All too often these are hidden in the silos of individual electronic health record systems. BIDMC@home harnesses the capabilities of the Health app in iOS 10 to serve as a secure, patient controlled, shareable database of medical records. Under the umbrella of the Open Notes initiative pioneered at BIDMC, patients will be able to view and download their physician’s notes from BIDMC, transforming their phones into true personalized health records.
Assessments:
As part of each patient’s individualized care plan, he/she is prompted to provide subjective and objective data to monitor health. These data include values that are synced via HealthKit from connected sensors or other apps (e.g. weight, blood pressure, heart rate, temperature, daily sodium intake) and subjective assessments. Using the ResearchKit framework, the app collects meaningful patient reported outcomes using simple questions (e.g. shortness of breath on a 0-10 scale) or more elaborate validated survey instruments.
Insights:
To empower patients to take control of their own care, the app provides a dynamic graphing engine so that patients can see the relationship between measurements, medication adherence, or amount of “as needed” medications taken and the direct results. By reinforcing the relationship between treatment and outcome, we hope to reinforce positive behaviors and improve treatment compliance.
Connect:
The app syncs with our secure messaging system and allows patients to quickly contact their care team members.
Thursday, November 17, 2016
Unity Farm Journal - Third Week of November 2016
This week we had the Supermoon - the largest/brightest moon since 1948
The pigs enjoyed basking in the moonlight while rooting and hunting for grubs/worms. Here’s a picture of hazel in the moonlight
Pigs are hedonists and there are three things that make them happy
1. Food
2. Warmth
3. Belly rubs
Here are a few pictures
Tofu enjoying a fall sugar pumpkin
Hazel stealing a piece of Tofu’s pumpkin
Hazel in the winter pig palace warming her posterior in the mid morning sun
A television film crew dropped by the farm this week to get closeups of the alpaca. Here’s what it looked like. The alpaca are demanding royalties.
We’ve racked our last cider of the season, and now all our fermented beverages begin their overwinter malolactic (secondary) fermentation until we bottle them in the spring. We’ll continue to brew honey lager over the winter and we’re studying how best to scale up our capacity to produce 5 kegs a week to meet growing demand.
At this time of year we’ve harvesting lettuce, spinach, and carrots for ourselves and the animals. We’re selling eggs, honey, and mushrooms. We’re preparing the farm for winter, keeping every animal area clean, dry, and filled with warm bedding. Our weekend work begins to shift indoors where we repair equipment, build new infrastructure, and catch up on paperwork. We're also making Unity Farm soaps and lip balms from honey, wax, and organic herbs.
Our sanctuary plan remains on track and we’ll double the size of the farm on December 15. We’re already beginning to plan events for the sanctuary - artists retreats, educational offerings, and infrastructure upgrades. Five years ago we were living in a small cape home in Wellesley and tending a small community garden. Who would have thought that we’ve been running 30 acres of agricultural production, caring for 150 animals, and producing organic fruits/vegetables/mushrooms while educating the public about sustainable agriculture. Truly, the journey in life, and not the destination, is the reward.
The pigs enjoyed basking in the moonlight while rooting and hunting for grubs/worms. Here’s a picture of hazel in the moonlight
Pigs are hedonists and there are three things that make them happy
1. Food
2. Warmth
3. Belly rubs
Here are a few pictures
Tofu enjoying a fall sugar pumpkin
Hazel stealing a piece of Tofu’s pumpkin
Hazel in the winter pig palace warming her posterior in the mid morning sun
We’ve racked our last cider of the season, and now all our fermented beverages begin their overwinter malolactic (secondary) fermentation until we bottle them in the spring. We’ll continue to brew honey lager over the winter and we’re studying how best to scale up our capacity to produce 5 kegs a week to meet growing demand.
At this time of year we’ve harvesting lettuce, spinach, and carrots for ourselves and the animals. We’re selling eggs, honey, and mushrooms. We’re preparing the farm for winter, keeping every animal area clean, dry, and filled with warm bedding. Our weekend work begins to shift indoors where we repair equipment, build new infrastructure, and catch up on paperwork. We're also making Unity Farm soaps and lip balms from honey, wax, and organic herbs.
Our sanctuary plan remains on track and we’ll double the size of the farm on December 15. We’re already beginning to plan events for the sanctuary - artists retreats, educational offerings, and infrastructure upgrades. Five years ago we were living in a small cape home in Wellesley and tending a small community garden. Who would have thought that we’ve been running 30 acres of agricultural production, caring for 150 animals, and producing organic fruits/vegetables/mushrooms while educating the public about sustainable agriculture. Truly, the journey in life, and not the destination, is the reward.
Wednesday, November 16, 2016
What Does the Trump Presidency Imply for Healthcare and Healthcare IT?
Many organizations have asked me to comment on the impact of the Trump Presidency on Healthcare and Healthcare IT. I served the Bush administration for 4 years and the Obama administration for 6 years. I know that change in Washington happens incrementally. There is always an evolution, not a revolution, regardless of speechmaking hyperbole.
What am I doing in Massachusetts? I’m staying the course, continuing my focus on social networking for healthcare, mobile, care management analytics, cloud, and security while leaving the strategic plan/budget as is.
I have no inside information and no involvement with the Trump campaign/transition team. From talking to people in Washington and reading publicly available resources, I believe there are 10 themes that will guide us over the next two years.
1. It’s likely that some corporate and personal taxes will be reduced, possibly increasing the funds available for innovation.
2. It’s likely that some regulations will be simplified, possibly creating more free time/attention span for innovation.
3. It’s likely that free market competition will increase and some of the political infighting around issues such as Medicare’s inability to negotiate drug prices may dissipate. I'm hearing that Medicare may be encouraged to negotiate drug prices in the Trump administration.
4. As corporate taxes are restructured, we may see repatriation of funds currently sequestered offshore. The tax cost of bringing such funds back to the US today is 40%. It may be 10% in the near future.
5. Although much has been said about replacing the Affordable Care Act, it’s likely that it will simply be amended to reduce the focus on Health Insurance Exchanges. There will be no “public option” for health coverage. Private payers will be encouraged to offer products across state lines. Pre-existing conditions will still be covered. Children will be covered on their parents health plans until age 26.
6. Medicaid will be moved closer to the states. States will have more funds to invest in innovation. Since states will directly benefit from cost savings resulting from investments in innovation incentives will be aligned.
7. FDA scrutiny of new products may be streamlined.
8. FTC enforcement actions may be relaxed.
9. NIH funding may be cut and projects like the Cancer Moonshot, Precision Medicine, and the Center for Medicare and Medicaid Innovation may be scaled back.
10. Most importantly, the transition from fee for service to value based purchasing will continue unmodified. This means that all the work we’re doing to improve quality, safety, efficiency, patient/family engagement, and population health will still be high priorities.
I recently spoke with administrators in Washington and they reminded me that although political appointees all resign on January 20th, career appointees will continue doing the work already in progress. Regulation can be changed in the medium term, but legislative changes (even with a Republican House and Senate) takes a long time. MACRA/MIPS is legislation. The Quality Payment Program is regulation implementing MACRA/MIPS. The career employees are on track to implement the Quality Payment Program as scheduled 2017-2019.
My advice is to remain agile, keep calm, and assume that many Obama era healthcare IT programs will persist. Focus on reducing total medical expense, measuring quality across the community, providing stakeholders with tools that are valuable to them, spreading the burden of data capture among teams of caregivers, and enhancing interoperability.
Working together and staying focused, above the fray of politics, we can make a difference.
What am I doing in Massachusetts? I’m staying the course, continuing my focus on social networking for healthcare, mobile, care management analytics, cloud, and security while leaving the strategic plan/budget as is.
I have no inside information and no involvement with the Trump campaign/transition team. From talking to people in Washington and reading publicly available resources, I believe there are 10 themes that will guide us over the next two years.
1. It’s likely that some corporate and personal taxes will be reduced, possibly increasing the funds available for innovation.
2. It’s likely that some regulations will be simplified, possibly creating more free time/attention span for innovation.
3. It’s likely that free market competition will increase and some of the political infighting around issues such as Medicare’s inability to negotiate drug prices may dissipate. I'm hearing that Medicare may be encouraged to negotiate drug prices in the Trump administration.
4. As corporate taxes are restructured, we may see repatriation of funds currently sequestered offshore. The tax cost of bringing such funds back to the US today is 40%. It may be 10% in the near future.
5. Although much has been said about replacing the Affordable Care Act, it’s likely that it will simply be amended to reduce the focus on Health Insurance Exchanges. There will be no “public option” for health coverage. Private payers will be encouraged to offer products across state lines. Pre-existing conditions will still be covered. Children will be covered on their parents health plans until age 26.
6. Medicaid will be moved closer to the states. States will have more funds to invest in innovation. Since states will directly benefit from cost savings resulting from investments in innovation incentives will be aligned.
7. FDA scrutiny of new products may be streamlined.
8. FTC enforcement actions may be relaxed.
9. NIH funding may be cut and projects like the Cancer Moonshot, Precision Medicine, and the Center for Medicare and Medicaid Innovation may be scaled back.
10. Most importantly, the transition from fee for service to value based purchasing will continue unmodified. This means that all the work we’re doing to improve quality, safety, efficiency, patient/family engagement, and population health will still be high priorities.
I recently spoke with administrators in Washington and they reminded me that although political appointees all resign on January 20th, career appointees will continue doing the work already in progress. Regulation can be changed in the medium term, but legislative changes (even with a Republican House and Senate) takes a long time. MACRA/MIPS is legislation. The Quality Payment Program is regulation implementing MACRA/MIPS. The career employees are on track to implement the Quality Payment Program as scheduled 2017-2019.
My advice is to remain agile, keep calm, and assume that many Obama era healthcare IT programs will persist. Focus on reducing total medical expense, measuring quality across the community, providing stakeholders with tools that are valuable to them, spreading the burden of data capture among teams of caregivers, and enhancing interoperability.
Working together and staying focused, above the fray of politics, we can make a difference.
Thursday, November 10, 2016
Thursday Unity Farm Journal - Second Week of November 2016
Yesterday in Massachusetts all my colleagues were fatigued from a long night of watching election results.
Everyone was asking about the impact of the surprising outcome. What will happen to the economy, the stock market, mood, culture, and domestic tranquility?
The questions we asked at Unity Farm were basic - should the election change our thinking about enhancing the farm and sanctuary? Will we be able to continue to fund the programs we’ve put in place? Should we continue to focus our efforts in the United States?
Our answer after speaking with career government employees, who will be serving the next administration, is to stay the course.
Continuing our mission of producing food, rescuing animals, and educating the public about sustainable agriculture is more important than ever. All of our plans and programs will move forward with enthusiasm. The relationship we have with our land, our community and our animals are stronger than any political event. We may focus more locally than on Washington DC over the next few years, but we believe we can make a difference.
Here’s what Kathy wrote on her Facebook page:
"My plans and dreams have not changed. I will not change the core of who I am. Here is where I will make my stand. I will not run, I will provide sanctuary and make that fight the important one. We have so clearly failed those that felt they needed such deep changes, we need to unite our world through the lifting of despair and feelings of unfairness or uselessness and fear. Leaving is not an answer, truly the grass is not greener elsewhere. Hating is not the answer, it will lead nowhere we truly want to go. Drowning out deep feelings with crutches like alcohol, mass entertainment, or drugs that blunt the emotions won’t solve the problems. Let us not fail the vulnerable - shelter them, speak for them. Stand, stay and fight for what you believe in even if it is hard. Courage; the efforts toward peace and unity are not the easy road."
What does life on the farm look like this time of year?
Here’s what the sunrise looked like on the morning after the election
Here’s what the coop opening looked like as the chickens and guinea fowl began their day.
Here’s what the paddocks looked like as the Fall leaves continued to fade.
This weekend, we’ll be racking cider, continuing our winter preparations and serving as a filming location for a TV show. You never know what each day on the farm will bring.
Be well.
Everyone was asking about the impact of the surprising outcome. What will happen to the economy, the stock market, mood, culture, and domestic tranquility?
The questions we asked at Unity Farm were basic - should the election change our thinking about enhancing the farm and sanctuary? Will we be able to continue to fund the programs we’ve put in place? Should we continue to focus our efforts in the United States?
Our answer after speaking with career government employees, who will be serving the next administration, is to stay the course.
Continuing our mission of producing food, rescuing animals, and educating the public about sustainable agriculture is more important than ever. All of our plans and programs will move forward with enthusiasm. The relationship we have with our land, our community and our animals are stronger than any political event. We may focus more locally than on Washington DC over the next few years, but we believe we can make a difference.
Here’s what Kathy wrote on her Facebook page:
"My plans and dreams have not changed. I will not change the core of who I am. Here is where I will make my stand. I will not run, I will provide sanctuary and make that fight the important one. We have so clearly failed those that felt they needed such deep changes, we need to unite our world through the lifting of despair and feelings of unfairness or uselessness and fear. Leaving is not an answer, truly the grass is not greener elsewhere. Hating is not the answer, it will lead nowhere we truly want to go. Drowning out deep feelings with crutches like alcohol, mass entertainment, or drugs that blunt the emotions won’t solve the problems. Let us not fail the vulnerable - shelter them, speak for them. Stand, stay and fight for what you believe in even if it is hard. Courage; the efforts toward peace and unity are not the easy road."
What does life on the farm look like this time of year?
Here’s what the sunrise looked like on the morning after the election
Here’s what the coop opening looked like as the chickens and guinea fowl began their day.
Here’s what the paddocks looked like as the Fall leaves continued to fade.
This weekend, we’ll be racking cider, continuing our winter preparations and serving as a filming location for a TV show. You never know what each day on the farm will bring.
Be well.
Wednesday, November 9, 2016
What is Patient and Family Engagement?
I recently participated in a nationwide (not the United States) healthcare IT planning effort and one recommendation was universal availability of patient portals. Several reviewers commented that patient portal is a loaded term - it implies that clinicians control the data and patients are given a view into it. One person said, “that’s so 10 years ago”
BIDMC has been working with patient/family shared medical records, Open Notes and various consumer-facing apps since 1999. Over that time we've discovered that patients typically do not want raw data, they want something actionable - the tools necessary to assist their navigation through the healthcare process.
A few years ago, Adam Bosworth, the leader of Google Health and later KEAS, met with me to explain his journey with patient and family engagement. He spent a few million in venture funds to build a website that helped patients understand their lab results. Patients visited once and never again. He then spent a few million creating online care plans. Patients visited once and never again. He then spent millions creating a social network for healthcare that enabled teams of people to come together to support each other’s wellness. That worked!
Our challenge is that we do not know precisely what patients want. It would be hubris for any IT leader to speak for all patients. We need to try many different technologies and let the patients decide.
My friend e-patient Dave pointed out in a recent post that my comments about downloads sounded very patient unfriendly. I explained that the context of my comments was a reaction to the Meaningful Use requirement for View/Download/Transmit. I completely support the notion that patients and families should have fluid access to all their data, but in 2014 when the Meaningful Use Stage 2 regulation was written, it felt too early to dictate just how that should happen and I commented that download and transmit required more thought.
I made the comment that no patient at BIDMC has asked for the CCDA download of their medical record, a raw xml file of data, since there are few tools that make such a download useful. Patients do ask for improved healthcare enabled by technologies that turn the data into wisdom.
Now that it’s 2016 and we have more experience, we’re seeing the emergence of apps such as Apple’s Healthkit and CareKit that put the patient in charge of healthcare data downloaded to their phone. I wrote this about HealthKit's ability to make View/Download/Transmit truly useful to all. We’re releasing our first HealthKit/CareKit app and here’s a description of some of the “data spigot” features:
“Every patient has a customized care plan that is seamlessly synced from the electronic medical record via FHIR interfaces. All outpatient medications are listed and updated in real time when a provider makes a change. Patients are encouraged to adhere to their prescribed medication regimen and can also track their intake of “as needed” medications. Providers define a care plan of non-medication activities that are part of a patient’s treatment. These may include diet, exercise, or special instructions.
An essential part of staying healthy is the plan and thought process laid out in the health care providers’ notes. All too often these are hidden in the silos of individual electronic health record systems. BIDMC@home will harness the capabilities of iOS 10 HealthKit Health Records to serve as a secure, patient controlled, shareable database of medical records. Under the umbrella of the Open Notes initiative pioneered at BIDMC, patients will be able to view and download their notes from BIDMC, transforming their phones into true personalized health records, and giving patients control of how their health data is shared.”
The BIDMC approach is to create application programming interfaces (APIs) using FHIR for structured data, unstructured data, and images that enable an ecosystem of crowdsourced apps to put the data under patient control. In my discussions with e-patient Dave, he pointed out that FHIR does not yet include every element in the health record. He's right but we need to pick some standard for information exchange and I believe FHIR is our best hope for data liquidity. Today it includes the Meaningful Use Common Data Set and with every HL7 ballot its completeness will improve.
If anyone interpreted my comments about downloads to mean that patients don’t want shared medical records, I apologize. I meant to say that I believe patients want more than raw data - that they want tools that help them more easily interact with the healthcare system. As BIDMC moves beyond portals to patient controlled apps, we hope to make that happen.
In the meantime, we do make the Meaningful Use downloads available in our patient portal, Patientsite for those who want the CCDA-based XML summaries of each visit. We also have the tools to create a download of a patient’s longitudinal record in the CCDA XML format upon request. We’re all on this journey together and just as the early Blackberry was replaced by the modern iPhone, I’m guessing that CCDA view/download/transmit will be replaced by apps that deliver great functionality to patients from APIs for data access.
BIDMC has been working with patient/family shared medical records, Open Notes and various consumer-facing apps since 1999. Over that time we've discovered that patients typically do not want raw data, they want something actionable - the tools necessary to assist their navigation through the healthcare process.
A few years ago, Adam Bosworth, the leader of Google Health and later KEAS, met with me to explain his journey with patient and family engagement. He spent a few million in venture funds to build a website that helped patients understand their lab results. Patients visited once and never again. He then spent a few million creating online care plans. Patients visited once and never again. He then spent millions creating a social network for healthcare that enabled teams of people to come together to support each other’s wellness. That worked!
Our challenge is that we do not know precisely what patients want. It would be hubris for any IT leader to speak for all patients. We need to try many different technologies and let the patients decide.
My friend e-patient Dave pointed out in a recent post that my comments about downloads sounded very patient unfriendly. I explained that the context of my comments was a reaction to the Meaningful Use requirement for View/Download/Transmit. I completely support the notion that patients and families should have fluid access to all their data, but in 2014 when the Meaningful Use Stage 2 regulation was written, it felt too early to dictate just how that should happen and I commented that download and transmit required more thought.
I made the comment that no patient at BIDMC has asked for the CCDA download of their medical record, a raw xml file of data, since there are few tools that make such a download useful. Patients do ask for improved healthcare enabled by technologies that turn the data into wisdom.
Now that it’s 2016 and we have more experience, we’re seeing the emergence of apps such as Apple’s Healthkit and CareKit that put the patient in charge of healthcare data downloaded to their phone. I wrote this about HealthKit's ability to make View/Download/Transmit truly useful to all. We’re releasing our first HealthKit/CareKit app and here’s a description of some of the “data spigot” features:
“Every patient has a customized care plan that is seamlessly synced from the electronic medical record via FHIR interfaces. All outpatient medications are listed and updated in real time when a provider makes a change. Patients are encouraged to adhere to their prescribed medication regimen and can also track their intake of “as needed” medications. Providers define a care plan of non-medication activities that are part of a patient’s treatment. These may include diet, exercise, or special instructions.
An essential part of staying healthy is the plan and thought process laid out in the health care providers’ notes. All too often these are hidden in the silos of individual electronic health record systems. BIDMC@home will harness the capabilities of iOS 10 HealthKit Health Records to serve as a secure, patient controlled, shareable database of medical records. Under the umbrella of the Open Notes initiative pioneered at BIDMC, patients will be able to view and download their notes from BIDMC, transforming their phones into true personalized health records, and giving patients control of how their health data is shared.”
The BIDMC approach is to create application programming interfaces (APIs) using FHIR for structured data, unstructured data, and images that enable an ecosystem of crowdsourced apps to put the data under patient control. In my discussions with e-patient Dave, he pointed out that FHIR does not yet include every element in the health record. He's right but we need to pick some standard for information exchange and I believe FHIR is our best hope for data liquidity. Today it includes the Meaningful Use Common Data Set and with every HL7 ballot its completeness will improve.
If anyone interpreted my comments about downloads to mean that patients don’t want shared medical records, I apologize. I meant to say that I believe patients want more than raw data - that they want tools that help them more easily interact with the healthcare system. As BIDMC moves beyond portals to patient controlled apps, we hope to make that happen.
In the meantime, we do make the Meaningful Use downloads available in our patient portal, Patientsite for those who want the CCDA-based XML summaries of each visit. We also have the tools to create a download of a patient’s longitudinal record in the CCDA XML format upon request. We’re all on this journey together and just as the early Blackberry was replaced by the modern iPhone, I’m guessing that CCDA view/download/transmit will be replaced by apps that deliver great functionality to patients from APIs for data access.
Thursday, November 3, 2016
Unity Farm Journal - First Week of November 2016
Now that I’m back from my Asia Pacific travels, I’m hard at work in the evenings and weekends catching up on the farm work I missed. The storms of Fall have caused a lot of fallen branches and trees. The 5 inches of rain (so much for the drought), have created a soup of mud, hay, and poop in the animal paddocks.
We’ve created the mother of all brush piles - 50 feet long and 20 feet high from all the fallen branches and debris in the forest around the barnyard. We’ll grind it next week and use the chips on all the trails we’ll build on the new Sanctuary property when the transaction closes in December.
For the paddock, we’ve added 20 yards of loam and sand. The alpaca are helping mix the amendments into the existing mud every time they walk and pronk (jump) through it. We’ve spent a lot of time thinking about water flows around the farm, using grading, gravel, and soil additions to create a healthy environment for the animals.
Every week the farm and animal sanctuary grows. This week, a few ducks were dropped off because they needed a pond (which we have) and more space. One of the ducks is a male - the first drake at Unity Farm. So far, so good. The 7 female ducks have welcomed him into the flock.
All of these animals require food and we’ve moved beyond wholesale purchases of supplies to working directly with manufacturers. Today, for example, we received a 2500 pound delivery of organic poultry grains. As I’ve said before, farming is just like gardening, just multiply the scale by 100.
The donkeys arrive in mid-December, as soon as we close escrow on the sanctuary property. We were thrilled to see this article about donkey rescue in the New York Times. We look forward to caring for these intelligent animals that live 40 years and like pigs, are smart enough to make decisions on their own.
This weekend, we’ll be crushing another 500 pounds of apples, planting more winter lettuce/spinach, and continuing to prepare the bee hives for winter. We’re still selling mushrooms, eggs, lager, cider, and honey but as we approach the winter, the harvest is done and the sales of produce will slow until our spring crop arrives in March.
We’ve created the mother of all brush piles - 50 feet long and 20 feet high from all the fallen branches and debris in the forest around the barnyard. We’ll grind it next week and use the chips on all the trails we’ll build on the new Sanctuary property when the transaction closes in December.
For the paddock, we’ve added 20 yards of loam and sand. The alpaca are helping mix the amendments into the existing mud every time they walk and pronk (jump) through it. We’ve spent a lot of time thinking about water flows around the farm, using grading, gravel, and soil additions to create a healthy environment for the animals.
Every week the farm and animal sanctuary grows. This week, a few ducks were dropped off because they needed a pond (which we have) and more space. One of the ducks is a male - the first drake at Unity Farm. So far, so good. The 7 female ducks have welcomed him into the flock.
All of these animals require food and we’ve moved beyond wholesale purchases of supplies to working directly with manufacturers. Today, for example, we received a 2500 pound delivery of organic poultry grains. As I’ve said before, farming is just like gardening, just multiply the scale by 100.
The donkeys arrive in mid-December, as soon as we close escrow on the sanctuary property. We were thrilled to see this article about donkey rescue in the New York Times. We look forward to caring for these intelligent animals that live 40 years and like pigs, are smart enough to make decisions on their own.
This weekend, we’ll be crushing another 500 pounds of apples, planting more winter lettuce/spinach, and continuing to prepare the bee hives for winter. We’re still selling mushrooms, eggs, lager, cider, and honey but as we approach the winter, the harvest is done and the sales of produce will slow until our spring crop arrives in March.
Wednesday, November 2, 2016
On the Road
Over the past few months, I’ve been in England, China, Denmark, New Zealand, and Canada.
Each of them is rethinking their healthcare IT strategy and is not entirely satisfied with past progress.
I’m often asked by senior government officials to help harmonize IT strategy at the country level. That I can do. I’m also asked to discuss the US Presidential campaign, but that defies rational explanation.
I frequently say that healthcare IT issues are the same all over the world. Here’s a few common observations
1. Top down never works
In every country I’ve visited (there are 195 in the world right now and I’ve been to about half), I’ve never found a healthcare IT program that succeeds by disenfranchising stakeholders and imposing a solution from above. Asking users what the want/need, then working collaboratively to deliver a workflow solution that enables them to practice at the top of their license tends to overcome any resistance to technology implementations.
2. A single EHR for a state, province our country never works
The VA, Kaiser, and Department of Defense are completely vertically integrated which means that payers and providers in all sites of care (inpatient, outpatient, emergency, urgent care, long term care) are part of the same organization and management structure. A single EHR platform works in those circumstances. However, when a country has private payers, private providers, or a mixture of a public payer with private providers, there is not a single command and control structure. There will be heterogeneity in requirements and care processes. A single EHR vendor cannot support all use cases. Similarly having 50 different EHRs is unlikely to provide the data integration and care coordination needed by a regional group of healthcare organizations. The right answer is a parsimonious approach - the fewest number of EHRs and technology tools to meet the needs of the region - not 1 and not 50. In Eastern Massachusetts we use about 6.
3. Interoperability needs a business case, a workflow and good policies
I was recently asked to define interoperability. I suggested that interoperability is having access to the data you need to coordinate care when you need it without a lot of effort or cost. If clinicians are paid more for repeating tests, they will repeat tests. If sharing records requires a convoluted workflow using some application outside of the EHR, clinicians will rarely take the time to exchange data. If privacy policies do not clearly define consent and allowable uses of data, clinicians will be too intimidated by compliance issues to embrace healthcare information exchange. Make data sharing part of the job/pay program, make it integrated into the EHR, and standardize the process for making data available to all stakeholders who need it, then data will flow.
4. There may not be a measurable return on a healthcare IT investment
One international hospital I recently visited said their hospital information system was a failure because they did not see a return on investment one month after implementation. Another I visited said they would reduce costs by shifting all the work to the clinicians, saving on administrative costs. Both are completely unrealistic expectations. In my 20 years of traveling the world, I’ve seen healthcare IT projects that improve quality in measurable ways - reducing readmissions, enhancing medication compliance, and improving processes. I’ve seen safety enhancements that markedly reduce errors. I’ve seen automation such as complex order sets that improve efficiency. However, Ive never experienced an IT project that reduces costs when all expenses of implementation and operation are accounted for.
5. The experience of past patients can inform the care of future patients. Different countries have different terms for this idea - big data, precision medicine, a learning healthcare system, population health, care management. If a society pools clinical data, financial data, social determinants of health data, government services data (food stamps, criminal justice, family services), and patient generated data, it is possible to ask questions about care already delivered to refine care yet to be delivered. Many societies are thinking about the benefits of population level data aggregations that may be anonymized to protect the privacy of individual patients.
Over the next few months I’ll visit Israel, Scotland, and Japan. You’ll see the details about their healthcare systems and the healthcare IT I discover in my “Dispatch from…” series. I’ll even go as far to suggest the best model I’ve seen that aligns incentives, embraces innovation, and balances burden/benefit. At the moment, I think the Nordic countries have done a good job and New Zealand has a chance to eclipse them all. But there are miles to travel before I decide on the winner for 2017.
Each of them is rethinking their healthcare IT strategy and is not entirely satisfied with past progress.
I’m often asked by senior government officials to help harmonize IT strategy at the country level. That I can do. I’m also asked to discuss the US Presidential campaign, but that defies rational explanation.
I frequently say that healthcare IT issues are the same all over the world. Here’s a few common observations
1. Top down never works
In every country I’ve visited (there are 195 in the world right now and I’ve been to about half), I’ve never found a healthcare IT program that succeeds by disenfranchising stakeholders and imposing a solution from above. Asking users what the want/need, then working collaboratively to deliver a workflow solution that enables them to practice at the top of their license tends to overcome any resistance to technology implementations.
2. A single EHR for a state, province our country never works
The VA, Kaiser, and Department of Defense are completely vertically integrated which means that payers and providers in all sites of care (inpatient, outpatient, emergency, urgent care, long term care) are part of the same organization and management structure. A single EHR platform works in those circumstances. However, when a country has private payers, private providers, or a mixture of a public payer with private providers, there is not a single command and control structure. There will be heterogeneity in requirements and care processes. A single EHR vendor cannot support all use cases. Similarly having 50 different EHRs is unlikely to provide the data integration and care coordination needed by a regional group of healthcare organizations. The right answer is a parsimonious approach - the fewest number of EHRs and technology tools to meet the needs of the region - not 1 and not 50. In Eastern Massachusetts we use about 6.
3. Interoperability needs a business case, a workflow and good policies
I was recently asked to define interoperability. I suggested that interoperability is having access to the data you need to coordinate care when you need it without a lot of effort or cost. If clinicians are paid more for repeating tests, they will repeat tests. If sharing records requires a convoluted workflow using some application outside of the EHR, clinicians will rarely take the time to exchange data. If privacy policies do not clearly define consent and allowable uses of data, clinicians will be too intimidated by compliance issues to embrace healthcare information exchange. Make data sharing part of the job/pay program, make it integrated into the EHR, and standardize the process for making data available to all stakeholders who need it, then data will flow.
4. There may not be a measurable return on a healthcare IT investment
One international hospital I recently visited said their hospital information system was a failure because they did not see a return on investment one month after implementation. Another I visited said they would reduce costs by shifting all the work to the clinicians, saving on administrative costs. Both are completely unrealistic expectations. In my 20 years of traveling the world, I’ve seen healthcare IT projects that improve quality in measurable ways - reducing readmissions, enhancing medication compliance, and improving processes. I’ve seen safety enhancements that markedly reduce errors. I’ve seen automation such as complex order sets that improve efficiency. However, Ive never experienced an IT project that reduces costs when all expenses of implementation and operation are accounted for.
5. The experience of past patients can inform the care of future patients. Different countries have different terms for this idea - big data, precision medicine, a learning healthcare system, population health, care management. If a society pools clinical data, financial data, social determinants of health data, government services data (food stamps, criminal justice, family services), and patient generated data, it is possible to ask questions about care already delivered to refine care yet to be delivered. Many societies are thinking about the benefits of population level data aggregations that may be anonymized to protect the privacy of individual patients.
Over the next few months I’ll visit Israel, Scotland, and Japan. You’ll see the details about their healthcare systems and the healthcare IT I discover in my “Dispatch from…” series. I’ll even go as far to suggest the best model I’ve seen that aligns incentives, embraces innovation, and balances burden/benefit. At the moment, I think the Nordic countries have done a good job and New Zealand has a chance to eclipse them all. But there are miles to travel before I decide on the winner for 2017.