This weekend is momentous not only for the 2nd inauguration of the President. History will say the Veterans Health Administration is innovative, truly patient centered and even a bit risky. Today, VA patients can view, print and download ALL their health record data in their My HealtheVet personal health record. It’s the time when veterans can see clinic notes and test results – from their couch.
The full record data is available via the Blue Button. In 2010, the White House announced the Blue Button, lead by open data gurus Peter Levin, Todd Park and Aneesh Chopra. I tend to think of Blue Button as a door, allowing information to come out of a locked room (the record). Some think Blue Button means they get their entire record, but that’s not necessarily the case. It depends on how much the health system lets out.
The phenomenal thing about the VA is the sheer amount of information available:
- VA Demographics
- VA Problem List (active problems)
- VA Admissions and Discharges (Discharge Summaries)
- VA Notes (Progress Notes)
- VA Laboratory Results: (adds Microbiology)
- VA Vitals and Readings
- VA Pathology Reports: (Surgical Pathology, Cytology, Electron Microscopy)
- VA Radiology Reports
- VA Electrocardiogram (EKG) Reports (list of studies)
- VA Continuity of Care Document (CCD, standard sharable .xml file)
See that fourth bullet? Notes! Actual doctor notes! Game change! For patients, caregivers and for the healthcare team and administrators. VA joins the ranks of OpenNotes – frequently discussed on this blog and an essential movement to get us to New. Medicine. Now.
I haven’t looked under every rock, but I suspect VA becomes the system offering the greatest number of people the most complete access to their electronic record. Now, about 997,000 Veterans have capability to access all their data.
A million veteran march toward participatory care.
There’s more information about VA Blue Button on their website, and an example of text output (PDF posted soon). Many will say it’s text-heavy, confusing and not user-friendly. I say: the door is wide open, the room is filled, and we’re ready to design new ways to give consumers/patients their own health information in the most meaningful way.
On this lovely holiday weekend, the words of MLK ring true as applied to health care:
“Faith is taking the first step even when you can’t see the whole staircase.” – Martin Luther King Jr.
Congratulations to all the VA staff, developers and leaders — for walking up those grand stairs.
Disclosure: views are solely the author’s and should not be attributed to any organization or agency.
Great to see that OpenNotes is now available. The initial qualitative data hinted that patients will be more involved with their care. Is anyone tracking the clinical impact?
Yes, the OpenNotes study found similar patient experience at all 3 health systems, related to feeling more in control of health, and motivated to address treatment plans. With these clinical sites, and now the VA, there is huge opportunity to evaluation several dimensions — affects on business processes and workflow (e.g., requests to amend records), patient and caregiver participation and health outcomes, and clinical team impact. Whoever can pull off doing a large prospective cohort study will have lots to contribute to this journey..
Yes, BUT: It seems that the VA is still withholding older notes: “Initially, you will be able to view VA Notes entered into your VA health record from January 1, 2013 forward. In the future, you may be able to view more historical VA notes (written before January 1, 2013).
Your VA Notes are available for viewing seven (7) days after your VA health care team member signs the note.” (from VA Customer Service, via email)
When will the “7 days” get reduced, and whne will the older notes be available?
Good questions, and I can give you a very non-official answer. VA had to start somewhere. It may not be the perfect solution, but it’s sure a great one to start with. You know – the beginning, solid stairs of that very dramatic staircase. :-)
I could see the argument for only going forward because providers will know from that point that notes will be open and they can be written with patient viewing in mind. The recent study found that doctors changed their notes.
“I know I changed mine I wrote better notes. Notes written didn’t take more time; they were more educational – “take penicillin BECAUSE.”-Tom Delbanco, MD, Co-Principal Investigator, OpenNotes
This is a great start. But what happens when a wounded warrior sees civilian providers, as frequently happens? Are records and notes from out-of-network encounters included in the VA system? If not, the VA records are incomplete and so is the Blue Button-generated data.
Congratulations to the VA for continuing to show great leadership with Blue Button! Fortunately for all of us, the Office of the National Coordinator for Health IT (ONC) in the Department of Health and Human Services is now working to take Blue Button nationwide.
We’re building Blue Button patient access to data into the “Meaningful Use” incentive program for providers and hospitals — that means that within about a year all participating healthcare providers (the majority of providers in the US) will have the capability to enable their patients to view, download, and share their data electronically with others. One of the benefits of exporting data (in response to Merle Buskin) is that you–as the patient–can be the one to compile and share distinct pieces of your health information among your healthcare providers so you and they can get a more complete picture of your health.
Another benefit is that you can feed your health data into apps and tools that let you do cool stuff with it — understand it better, visualize where your health is relative to your goals, and check for (and address) errors or omissions in your medical record. To turbocharge development of great consumer applications, we’re writing technical guidance for providers and programmers that evolves some of the standards that support Blue Button. And we’re doing it with input from about 70 organizations. Through “Blue Button +” standards, patients will be able to get regular automatic updates of their health information electronically. That means programmers can build even better tools that really make the information useful.
There’s a lot going on with Blue Button–including a Pledge Program to support Data Holders who want to share their data: http://healthIT.gov/pledge, technical standards work: http://wiki.siframework.org/Automate+Blue+Button+Initiative, a design challenge to make the information usable (and beautiful): http://healthdesignchallenge.com, and a video challenge for members of the public http://bluebuttonvideo.challenge.gov
Follow the latest on Blue Button via http://healthIT.gov/bluebutton
Lygeia, thanks – any thoughts (Sue too) on Merle’s question about Blue Button data “porting forward” to non-VA providers?
Not sure I understand what you mean when you write “you–as the patient–can be the one to compile and share distinct pieces of your health information among your healthcare providers.”
If you mean that the patient must post info from their providers rather than the provider posting the info/notes, you will seriously undermine the value of the data. In my experience, docs want to know what docs say/write, not the patient’s interpretation of what the doc told him or her. Also, most patients won’t do it.
Additionally, I understand your enthusiasm for the potential of Blue Button but, in all candor, the reality isn’t even close to what you describe.
Eg., the information you get when you download your Medicare records using Blue Button is virtually useless to both patient and doc. It is insurer-type info listing the date, the provider you saw, the “Submitted Amount,” the amount Medicare allowed for the visit, etc. The text in “Procedure Code/Description” and the “Modifier Description” are generic boiler plate. The only substantive data are the “Diagnostic Codes” – which are meaningless numbers to patients and most providers.
Please keep in mind that myhealthevet blue button does not disclose all medical information. Furthermore, I suggest still filing a release of information for a hard copy of all and complete medical records from the facility you are treated. Then do a comparison, you will see more words and more pages and different information on the physical medical report over the blue button report you get offline.