Open Notes research: VA patients find their clinical notes helpful and don’t bother doctors much.

A new research study on OpenNotes, one I’ve had the joy to be part of, has been published in the Journal of the American Medical Informatics Association (JAMIA). VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes, by colleagues Kim Nazi, Carolyn Turvey, Dawn Klein and Tim Hogan, describes views of users of the VA’s personal health record MyHealtheVet. feat_bluebutton

MyHealtheVet has offered patient access to their electronic health record through Blue Button since 2010. In January 2013, that access exploded to include clinical notes. All the notes. Primary care, specialty medicine, mental health. Patients could also see reports of tests – from Xrays to CT scans to lab results. These can be seen 3 days after completion (except Pathology has a 14 day hold).

How are patients using access to clinical notes? What do they find? Do they contact their doctor? This study presents findings from the first 9 months patients could access clinical notes. Users find reading doctors’ and nurses’ of benefit, help explain things and reinforce discussions from visits. Most use the information on their own, with few contacting their doctor.

3 out of 4 patients did not contact their provider after reading notes, because they had no reason to. Patients planning to contact their provider wanted to learn more about a health issue, medication, or test result, or get an explanation about something in the note.

Read the full paper, PDF here, for detailed results from more than 28,000 who responded to the survey on the MyHealtheVet website June – September 2013. Here’s a few of the most interesting findings:

Among 6,810 who said they accessed VA Notes, approximately:
– 72% are age 60 or older
– 73% read the notes, 26% downloaded a copy and 11% shared notes with others
– Just under 6% discussed the notes with a VA provider or care team member
– 75% had no plans to talk to the provider
– 82% who didn’t plan to talk to provider said they had no reason to do so
– Of those who planned or did talk to provider, 87% do so to learn more

The study results offer more glimpses into this new world of OpenNotes. While some patients clearly feel that talking to their doctor about the notes ‘bothers them’, a few feel that provider discussion is needed to ‘correct’ the notes. I believe full transparency is absoutely the right thing to do, yet does require new kinds of thinking and acting. Notes have to be written with the patient and family in mind. Yet we need to go beyond the idea of acceptance, toward fully embracing such a shared contribution. OpenNotes are a great Shared Health Data journey – one I’m sure we’ll look back on and chuckle, wondering what all the fuss was about. Let’s get there now.

Welcome Home to Portland Maine.

I took a very long pause writing posts. Hey, it just happened. Life got busy. I moved. Both kids got planted in college life. And I’m firmly embedded back in New England.

I love Portlands. My first time living in Portland, Oregon was in ’79. It was way smaller then. Got a job in a research lab at the VA – #1 of several VA jobs. Then med school at OHSU, and primary care residency in Rhode Island. It didn’t take long to run back to the Northwest – with all the 365/24/7 green and those mountain glaciers. Learned to love rain. Came to Portland, Maine in ’97 – to combine research, practice improvement and medical education.

I soon met Richard Rockefeller, who introduced me to patient computing before most people owned a computer. He opened my eyes to possibilities of technology for health care and patient partnership. He introduced me to informatics, and was single-handedly responsible for shifting my career trajectory. I was fortunate to gain his support to study patient use of an early personal health record at Martin’s Point in Brunswick, Maine. Screen Shot 2014-08-27 at 3.04.29 AM The take home: people with chronic conditions used the portal as often or more often than the ‘worried well’ (those not with a chronic condition). That study was published in J. Medical Internet Research in 2004, “Using Claims Data to Examine Patients Using Practice-Based Internet Communication: Is There a Clinical Digital Divide?” These results were enough for me: I returned to Oregon for formal medical informatics education.

Now I’ve returned to Maine. The end of Portland-to-Portland transitions.

It was devastating to learn a few months ago about his tragic death. The world lost a wonderful creative soul and pioneer, passionate about improving peoples lives and connecting one another through the use of digital tools.
Richard, you are sorely missed, RIP.

The Society of Participatory’s Michael Millenson wrote a lovely blog post about Richard.

There’s great innovation happening here, and I look forward to jump into the fray. VA Maine and the VA Office of Rural Health recently embarked on connecting with the statewide health information exchange, HealthInfoNet. Maine’s HIE is a national leader, with aggregated data on the great majority of residents from all hospitals and most care sites. Using an opt out model, clinicians from across the state have real-time data at their fingertips. I look forward to helping with clinical adoption at Maine VA, and learn much more about shared health data that’s actionable for clinicians.

Next stop: HIE facing the consumer? Maybe not today. It’s still summer, the sun is shining and it’s a good day for a quick kayak in Casco Bay. Always nice to be on the water in Maine, but sad that there’s one less sweet soul with whom I planned to reconnect.

HIMSS and HERS – On The Cusp Of Something Big

HIMSS 2014 just wrapped up in Orlando. My 4th HIMSS in 6 years, I found the usual: crowded, vendor centric, sterile massive location. Food was costly and not healthy. My feet hurt. Typical, right?

But there were also diamonds, too – real signs of great things emerging. Namely, more women, more patient & consumer focus, and maturing capabilities where new models of care will blossom. Here’s some thoughts..

HIMSS Holliday HIMSS and HERS


1. Women are in the Health IT House!
We’re hearing from, and following more women in #Health IT – and it’ll keep going. Artist, Patient Advocate & worldwide speaker Regina Holliday set up her easel at the Connected Patients and Families Center and said, “Why HIMSS? What about HERS?” Reggie always reminds us of who we are and where we need to go. Her painting is comical while it cuts to the chase!

Former Secretary and Senator Hillary Clinton gave a rousing plenary to a packed crowd, talking about her healthcare journey and boosting attendees’ confidence that the health IT field will help improve health care while making it easier for patients and families to have a better experience. I’m optimistic but worry about HIT adding costs, something she didn’t mention. I suspect most of us were surprised when she gave us insightful fireside comments on geopolitical events. She ended by reminding us that women have come along way, but work is far from done. She recently launched No Ceilings, a project to support full participation of women and girls in the 21st century.
HIMSS clinton
Many other women champions and thought leaders were at HIMSS14, too many to list. A few in the public sector include the VA’s Theresa Cullen, ONC’s Judy Murphy and Lygeia Ricciardi, and of course new National Coordinator Karen DeSalvo. In the private sector, women leaders such as Humetrix CEO Bettina Experton are fierce and visionary but way too scarce.

More to Go: We need more women leading HIT companies, on Boards and advisory teams. Men: Hilary Clinton said that everyone plays a role and that everyone benefits!

2. Patients and Caregivers pounded the HIMSS Runway.
The Connected Patients and Families Learning Gallery was incredible. In the vendor area was significant square footage, carpet, lounge chairs, a big screen and continuous presentations. Consumer Voice is still modest compared to Big Software, Big Hardware and Big Data…but it is getting watered! With HIMSS also announcing the Connected Patient Committee – participatory design is set to grow. HIMSS Senior Director Mary Grizkowitz has been a passionate leader driving Patient Voice and participatory medicine at HIMSS. Other champions include Kate Berry, Leslie Kelly-Hall, Kate Christensen, Laura Adams and so many others. 
HIMSS Connected Patient view

More to Go: Connected Patients & Families gets a central location inside the Vendor area, co-located with patient-facing tools. 

3. Data exchange is finally trickling down to the consumer. I spend time learning what people want from health care and thinking about solutions to meet these needs. Consumers, patients and families don’t necessarily say ‘I need a list of my meds and allergies’ but do say, ‘help me take care of myself, and don’t make it hard for me to get information.’ A big part of that is health record access – shared records. ePatient Dave DeBronkart gave a talk Let My Data Go! in the Interoperability tent == a very high visibility area at HIMSS. He adeptly advocated for Blue Button and OpenNotes. Way to go, Dave!

More to Go:
all I can say is, Move Over Moses – Let our data go (and be entered!)

There was so much information and chats at HIMSS (and HERS!) that it’ll take time to digest, review and follow-up. At least my feet are OK now, and I just had a salad for dinner. :-)

Regina Holiday’s slides can be found here.

Danny van Leeuwen and MaryAnne Sterling’s slides focused on Caregiver Contributions can be found here.