"We don't have to put the Patient at the Center - The Patient IS the center of health." - Farzad Mostashari
Today the Consumer Health IT Summit - 2012 kicks off at the Hubert Humphrey Building in Washington DC.
HealthCa.mp is taking part by running one of the tracks in the afternoon work sessions.
Peter Levin is here to talk about the BlueButton Initiative
"People like Todd Park, Farzad and Aneesh Chopra provide Air Cover that lets you take risks in Government"
BlueButton came from a "Why Not?" question.
In Memoriam - Jim Speros - Blue Button is here because of the work he did.
The idea of BlueButton was conceived in New York in January 2010 at a Markle Foundation meeting where Public and private sector folks could engage in dialog.
The ONC is running with BlueButton to turn it in to a National Initiative.
The VA Expected may be 25,000 people would be interested in BlueButton. The VA reached that in 3 months. That number, less than 2 years later is over 1 Million.
Remember: By Law patients have the right to their medical records, when available. The challenge is making sure those records are available.
Randy Watson - A Veteran and proponent of the BlueButton - is a Facebook junkie and friended the VA page on Facebook. Little did he know that Peter Levin was one of the moderators of that page.
Peter Levin recruited Randy to try the BlueButton. Randy used to have to go a VA hospital and pay to get copies of his records. Randy is dealing with multiple chronic conditions. His file with the VA is over 600 pages just for his heart disease. Now he can access all of his data in seconds.
Patients NEED TO ASK FOR THEIR RECORDS!
Randy "I have a right to my records. I have the iPhone App that lets me access those records from anywhere. You have to look after yourself."
Next up: Farzad Mostashari and Lygeia Ricciardi
Lygeia: "We are not the Government leading the way. We are the Government as Catalyst. It is a partnership of the public and private sector."
Last year there were 30 pledging organizations and this is now over 400.
Two types: Data Holders and Non-Data Holders: http://www.healthit.gov/pledge/
The three A's of Consumer engagement:
1. Access
Meaningful use is meant to drive access. 66% of hospitals met the measure to give people access to their medical records - But no patients asked.
In meaningful use stage 2 there is more accountability in driving hospitals and doctors to encourage use. Stage 2 will measure that at least 5% of their patients use the tools to gain access.
2/3rds of patients would consider changing doctors in order to gain access.
We therefore have a disconnect.
2. Action
Look at your records, Check for errors, share it with others.
The other side of action is engaging the developer community.
Many developers in health care are engaged because of a personal story. Watch out for BlueButton Developer Challenges.
3. Attitudes
Do you feel uncomfortable asking for your health information.
Farzad - The chart was the only place where all the information came together. Each doctor only has one piece of the puzzle. The Chart has it all.
Our data is for us and about us.
Video Challenges have been created to encourage people to ask.
Alex Drane of Eliza: Created a video to educate people about accessing and sharing our health information.
Ask your Health Provider how they use HealthIT.
Check out the video: HealthIT.gov/4Uvideo
The ONC is looking for input on the Three A's strategy.
BlueButton - What's Next?
Farzad and Peter Levin are back talking about the next phase of BlueButton.
We don't just want to do BlueButton inside the Government. We need to do it outside the Government.
We want Health Citizens to ask for their health data.
The objective is to grow from 1 Million users to 100's of millions.
Turning the BlueButton from a noun to a verb!
We have to make the BlueButton more usable. It needs to be both Human and Machine Readable.
Meaningful Use includes the concept of allowing consumers to transmit their health information to a third party. This moves us to a concept of a personally controlled health record.
There are already 100M americans with electronic health records. We need to unlock those records for the patients.
Cerner, NoMoreClipboard publicly declared support for BlueButton View Download Transmit by early 2013.
The three BlueButton Initiative Presidential Innovation Fellows are here at the summit. These three are driving the promotion of BlueButton turning it from a noun to a verb.
Todd Park - Driving openness and the power of data.
Why is BlueButton one of these major initiatives? Because patients are the most underused resource in Health Care.
Getting access to your own data isn't an abstract thing. It can be the difference between life and death.
BlueButton absolutely transforms the life of Americans.
Access to data is driving transformation across many industries.
Patient Engagement is the blockbuster drug of the Century.- Leonard Kish
Access to our Health Data is enshrined in the HIPAA law of 1996.
Cignet Health in Prince George's County just got fined $4.3M for not allowing patient access to their Health Data.
There is a wide perception that HIPAA is a barrier to patients accessing their data. HIPAA is about using health data for the benefit of the patient and only the patient.
BlueButton at Center For Medicare and Medicaid Services: BlueButton is giving people the raw materials to manage their own health.
The Automated BlueButton Initiative is moving this to allow automated push and pull of BlueButton data. CMS has been an early adopter of BlueButton. CMS now provides access to 3 years of Part A/B data.
CDC is excited that the rest of the world is catching up to providing data. We are facing a 50 year high of Whooping Cough. Adults need a booster but only 8% of adults have. Wouldn't it be nice to be go online and check!
Indiana has implemented MyVax to allow residents to get information on their vaccinations. Next week in Minnesota abnother 9 states are looking to learn from what Indiana has done.
MyVaxIndiana
NIH Cancer Institute: 575,000 people will die of cancer this year. About half of those deaths are unnecessary.
84% of patients think their docs are using electronic medical records.
Docs sharing information electronically. 92% of patients said this was very important
90% of patients thought the ability to download their health data was very important.
Todd Park: The main action with BlueButton is happening in the private sector.
Lygeia Ricciardi is now introducing a panel of private sector organizations that are working with BlueButton.
- Bill Feller, Vice President of Innovations, UnitedHealth
- Clay Patterson, Vice President and General Manager, Cerner
- Becky Sykes, Chief Information Officer, Catholic Health Partners
- Susie Hull, Consumer e-Health Engagement Task Force, Alliance for Nursing Informatics
- Alan Blaustein, Founder, CarePlanners
- Loyce Pace-Bass, Director of Policy, LIVESTRONG
When Patients are engaged they are healthier. Over half of consumer outcomes are driven by their decisions.
UnitedHealth have given 17M members access to their health records via BlueButton. On track to reach 26M users of their 77M members.
Clay Patterson - "You can't change healthcare if the patient is a passive participant."
In the Patient Engagement business at Cerner: Implementing View Download and Transmit BlueButton ASAP. Bluebutton download is happening in their next release. Cerner are also hosting the Partnership with Patients Summit on Sept 21-23 and HealthCa.mp/KansasCity is a part of that.
Catholic Health Partners is deploying consumer portals. Catholic has gone from not wanting to give access to encouraging it. They have even adapted their patient workflow to sign up the patient as part of their first visit.
ANI: Represents 3.2M nurses. Part of an Alliance to bring a unified voice for nurses. Nurses are in a unique position with their relationship with patients. This week 3.2M nurses are being asked to stand up and ask for their medical records.
CarePlanners: Kudos to the HHS team and Todd Park - for their collaborative spirit which is transformative. If more people were like this we would be a much better society. Alan Blaustein had a rare cancer (only 500/year). Found himself at the intersection of competitive interests in health care.
Access is not the only issue. The next phase is navigation, organization and coordination of care. Want to help people better curate their health information.
Helping people to Avert a health crisis.
"There are legions of entrepreneurs ready and waiting to attach these challenges. We have the technology available. We need to make the information available."
Livestrong: It is all about the patient. 2010 survey: Patients want their data, take it with them, share it.
They want to USE their data. They want to feed it in to applications so they can ACT on it.
In the area of survivorship: IOM - Lost in Transition survey. Very little information about the path after a cure.
Livestrong is syncing their care plan with various cancer registries so that information can be imported and acted upon.
What can Providers do to help Patients use Health IT.
Catholic Partners are piloting video discharge instructions.
Clinicians can invite their patients in to a conversation. What is their data telling them. How do they coordinate care across providers.
Care Plans have been the domain of the provider/nurse for an episodic visit. THere is work to evolve a longitudinal care plan.
We need to write care goals in the patient's language rather than the provider's language.
What advise would you give to others to get involved:
Keep it simple. People don't understand the acronyms. Think in terms of stories.
Ease of access. Easy to understand. Use terms consumers understand.
Not a one time message. Keep reinforcing.
Don't make a token effort. Not a tick box commitment. Be engaged.
Provider should try using the tools they are giving to their consumers.
Entrepreneurs need to understand what they are building. Understand the problem they are solving.
We need educated consumers. Don't dumb down the information to meet the consumer. Help them understand so they can take care of themselves.
There is a Medicaid pilot in Michigan for BlueButton.
Closing Remarks, featuring Dr. Bill Moreau, Managing Director of Sports Medicine, United States Olympic Committee and Farzad Mostashari, National Coordinator for Health IT, HHS
Health isn't just about sickness. It is about being able to lead a healthy life.
The USOC has one of the most transient populations.
Their health IT platform was archaic back in 2009. The average olympian has 8 clinicians dealing with their care.
The new Health IT system went live in time for the London Olympics.
The Lesson - If you want to get it done you can - if you put the effort in to the implementation.
The Athletes were able to fill in their own health record. Every clinician had access to all of the information - at any time.
The Athletes can download their data. They can create a jump drive with their data which they can carry with them.
Farzad gives a reference to @QuantifiedSelf.
The new Health IT system gives the US Olympic Committee the ability to help their athletes better understand their performance.
Farzad: "Patients' Access to their data is not just a right. It is the right thing to do"
