My research buddies at the NIH mHealth Institute (#mHealth14)

This year at the mHealth Summit, I opted to attend the 2014 NIH mHealth Institute pre-conference. This 2-day session, lead by Dr. Wendy Neilson (@WendyNilsen) from NIH’s Office of Behavioral and Social Sciences Research, gives a view of app thinking from the perspective of research, focusing on ways to use and study mHealth apps for change. This space is so important but not easy to do. Developers tend to focus on functionality, researchers on populations and study questions. mHealth research has to be practical as technology moves swiftly. No 3-year randomized control trials need apply. True transdisciplinary efforts must create agile approaches done in scientifically robust ways.

Alain Koffi, MD, PhD, Johns Hopkins Bloomberg School of Public Health; Susan Woods, MD, MPH, Veterans Health Administration (@SueWoods), Linda Park, PhD, FNP-BC, U. California San Francisco; Dayo Ajayi-Obe, MD, SM, Imperial College Healthcare NHS Trust; Donna Spruijt-Metz, MFA, PhD, U. Southern California and NIH mHealth Institute Faculty (@metzlab); Amy Dunaway, MPH, MA, U. Missouri; Brad Tritle, CIPP, vitaphone e-health solutions (@BTritle); Zdenek Gutter, PhD, Czech National eHealth Centre, Stimcare; Sumal Nandasena, MD, MSc, MBBS, Sri Lanka Ministry of Health. Not in photograph: Robyn Stremler, RN, PhD, U. Toronto; EunSeok (Julie) Cha, PhD, MPH, RN, Emory University.

The best part of the experience was that it was shared. We worked in small groups at round tables coming up with problems to solve, and ideas and methods to study them. Our international group was collaborative, theorizing about serious stuff: pregnant women waiting for Medicaid eligibility assessment. What did we come up with? We decided to give women a smart phone, loaded with our ‘study app’ – connecting users to one another and to community information (Why not? It’s reasonable to think that handing out technology can improve health and cut costs, too). We were interested in studying effects of social networks and access to virtual resources — developed based on what was important in the women’s lives and designing to fit their needs. Lecturer “Billie” Nahum-Shani demonstrated her sharp methodology expertise, pushing us to ramp up our science-thinking.

We probably won’t write a proposal together, but some are sure to pursue mHealth research funding in 2015. We had fun thinking about how to dig into a rapidly growing field and learned from all the speakers. Thanks to all the mHealth NIH Institute faculty (check here for future trainings). Our group gives special appreciation goes to Donna Spruijt-Metz, who kept us on our toes our 2nd day group facilitator – thanks, Donna!

Wouldn’t it be fun for this group to come back together — like Oprah — in 5 or 10 years and see what everyone’s up to? Let’s stay in touch, team!

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.