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.

Change doctors’ minds on OpenNotes in about an hour

My prediction for 2014 is that it’ll be a blockbuster year for OpenNotes – sharing clinical notes with patients online.

For providers who want that level of transparency, yet find physician attitudes can be a roadblock – take heart. We can move the needle and change minds. I observed this during Medicine Grand Rounds at Oregon Health & Science University (OHSU).

Tom Yackel, MD, MPH, OHSU’s Chief Medical Information Officer invited me to join him to give a talk on OpenNotes. It was a easy ask; I’m a huge champion of the Veterans Health Administration’s Blue Button offering OpenNotes, now one year and counting. Sharing notes is also an area of my research, particularly from the perspective of patients and caregivers.

Grand Rounds was just before the holidays, so I worried about attendance. Turns out it was well attended. Maybe the topic raised curiosity. We gave out audience response gadgets to poll attendees at the beginning and end of the talk. Early on, we asked people their agreement with the question, “I think sharing progress notes with patients in MyChart is a good idea”. Purposely not displaying results the first time, we asked again after the presentation & discussion. The proportion who agreed sharing notes was a good idea increased from 54% to 80%.

It’s hard to know if the patient experience stories hit home, or maybe people were leaning to support OpenNotes in the first place. Perhaps a crucial moment happened when the discussion focused on provider workload and a physician leader said:

“We’ve been doing this for 10 years at the VA, and I’ve never had any problems from a patient being able to read their notes. We need to get over this and move on.”

Here’s our results — Before and After Grand Rounds:
DMICE Grand rounds 2013

When it comes to OpenNotes, engagement with Patients starts by Engaging with Providers. Yes! We Can!

Link to Grand Rounds video is here.

Here are the slides we presented: