Shared Health Data

design. deliver. better health with your own information

Shared Health Data - design. deliver. better health with your own information

New big kid on the block: VA joins OpenNotes as a partner. Tipping Point?

Today the MyOpenNotes website announced the Veterans Health Administration joining the Robert Wood Johnson Foundation initiative as a partner. Providers partners – Beth Israel Deaconess Medical Center, Harborview Medical Center, Geisinger Health System, MD Anderson Cancer Center – are fully committed to give patients online access to clinical notes.

ON Sharing VA

The VA’s more than 1 million authenticated users of My HealtheVet personal health record can use Blue Button ‘Download My Data’ to view, download or print all clinical notes in their health record, plus get test and imaging results. Plus a Continuity of Care Document summary of their health information. Does it include specialist notes? Yes! Mental health notes? Yes! Emergency room notes? Hospital discharge notes? Yes, yes and yes! How cool is that?

As the VA goes, so goes the nation? Hope springs eternal for 2013 to be the OpenNotes tipping point, leading to rapid dissemination of Blue Button WITH NOTES.

There are lots of people who had the vision for this, and have worked very, very hard over the years to make this happen. Just to cite a few:
- Rob Kolodner, MD, former CHIO, and Ginger Price, former My HealtheVet Program Manager;
- Theresa Hancock, Director, Veterans/Consumer Health Informatics Office (V/CHIO);
- Paul Nichol, MD, and Linda Kinsinger, MD, former Chairs, My HealtheVet Clinical Advisory Board;
- Kim Nazi, PhD, V/CHIO Analyst, PHR expert & researcher;
- Peter Levin, PhD, former CTO & Blue Button pioneer;
- so many dedicated federal leaders and workers;]
- Markle Connecting for Health Workgroup, original Blue Button Think-Tank.
- Carnetta Scruggs, My HealtheVet Development Team; and of course
- Veterans and families, who consistently ASK for access to their health information, including NOTES…

A huge shout out and thank you to all OpenNotes leaders, supporters, promoters, researchers, and users. In particular to the leadership of Drs. Tom Delbanco and Jan Walker!

I’ve commented before how Blue Button is just the beginning of the Deep Blue Sea (it’s a jelly fish, after all…). With the VA now meeting this audacious goal…the sea just got a lot less deep. The last mile is to make the information much more user-friendly…easy to use and easy to read and act on. In other words, have the notes and shared health data serve be flotation device as they go for a swim :-)

Million Veteran March Toward Participatory Medicine – VA OpenNotes

This past weekend, the Veterans Health Administration kept their promise of shared health data — substantially expanding health record information available to patients through the VA Blue Button in the personal health record. About 1 million patients can get their whole record via VA Blue Button.

Now, My HealtheVet PHR users can get all test results, from labs to radiology to pathology. Pathology! They can download and print providers’ clinical notes. Notes! It’s not real time, but it’s Real Big. Notes and results can be seen after 7 days. Pathology at 14 days.

VA Blue Button

As a clinical champion of this effort, I field questions and concerns. Angst is from mental health providers, with concerns about patients seeing their written assessments. Some believe it may negatively affect clinician-patient therapeutic relationships. I try to point out that (a) patients already have legal access to these notes, (b) VA opened records to >7000 patients for 10 years and not much happened (except people got empowered), and (c) research shows more benefit than expected.

We don’t have all the answers, and still have a lot to learn about this. But now there’s one very large place to learn from…

What do you think? How will patients and clinicians benefit? Will there be downsides? What about health systems, what will change? Let me know.

Additional comments posted on Society for Participatory Medicine blog.

Note: this post does not represent any organization or agency