Category Archives: VA

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 was insightful, a pioneer with vision to see how the internet would create stronger partnerships between patients and health providers. I met him years ago when he began Health Commons Institute, a Maine non-profit that spread the word about patient-computer-provider opportunity. He participated in the seminal effort of Healthcare in a Land Called People Power: nothing about me without me. Richard 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.

NHS and VA Sharing Experiences & Ideas in Digital Health

Last week I had the privilege to meet a group of leaders, clinicians and let’s-make-the-future-now thinkers from the U.K. – part of a 3-year collaboration between the National Health Service and the Veterans Health Administration. I can’t thank the members of this collaboration enough, for being able to participate in several days of discussions, walking and dinners. A downright lovely few days.

The opportunity for this exchange is described in Making Connections, a transatlantic exchange to support the adoption of digital health between the US VHA and England’s NHS, by John Cruickshank, Joanne Harding, Jon Paxman and Charlotte Morris. The aim of the Exchange Programme is

to improve clinical engagement, develop
confidence new technologies work, increase leadership to drive digital health into everyday use for the majority of patients.

While some health politics does vary on each side of the Atlantic, both health systems provide public services for large, complex and aging populations. Through our discussions it quickly became clear that the drive for improvement and patient-centered care are shared, and the day-to-day challenges of busy healthcare teams and hurdles of coordinating care are the same. So deep dives and hands-on collaboration only serve to strengthen the resolve to meet the needs of patients and caregivers by developing and disseminating digital tools that are useful and valuable. I was particularly intrigued to learn more about how the NHS embraces patient and caregiver input into care processes. They talked about how this is a required element for their care delivery. We need to learn more about this participatory experience, and I hope someday I can observe it real-time.

I wasn’t able to join their visits to VA facilities in D.C., Baltimore and Martinsburg, VA, but coordinated a trip to Kaiser’s Center for Total Health. Director Ted Eytan (@tedeytan) and International Liaison Joy Lewis (@joylewiskp) provided a thoroughly engaging tour, touting (rightly so) Kaiser’s online reach with patients over 65%, and how they’re driving more care into the remote and digital spaces.

At that visit, Neil Evans, Co-Director of VHA’s Connected Health Office and a general internist at the VA in Washington, D.C., and I keyed in on this theme: High Touch and High Tech…Anytime.

A huge thanks to Jo Harding (@jhardingNHS), who leads the NHS-VA collaboration, has helped UK transform to new models of care and promotes telehealth for people with long term conditions through the Department of Health’s 3millionlives programme. And here’s big shout outs to all who journeyed here: Martin McShane (@docmdmartin), Director Domain 2; Victoria Corbishley, Head of Change Management; Gail Beer, 2020health Facilitator; Jane Wells, Oxleas NHS Foundation Trust Service Director; Sian Howell, Southwark CCG Governing Body Clinical Lead; Matthew Hodson, Nurse Consultant Homerton University Hospital; Eileen Sutton, Assistant Director of Urgent Care NHS London; Josip Car, Director of Global eHealth Unit; Martin Kuper and Greg Battle, Whittington Health Medical Directors; Carol Gillen, Whittington Health Director of Operations; and Helen Taylor, Whittington Health Head of Pharmacy.

I’ll end yielding the floor to our UK colleagues, with comments from their daily blog posts–

“We could not have been made to feel more welcome and the fantastic day that they had put together and willingness to share demonstrated real pride in the service that they provide to their patient population.”

“We need to be the story tellers who convince anyone who will listen that this is a must do. We know the technology has come – email, apps, telehealth – whether we want it to or not. We know the patient centred benefits it can bring, if given time and investment to flourish. We have seen the benefits to health care professionals in releasing time to care. We need to support professionals and the public to adapt, adopt and accept the new world at our finger tips. As an American President said, ‘Change will not come if we wait for some other person or some other time. We are the ones we are waiting for. We are the change we seek.’ ”

Photos are from our visit to the Kaiser Center for Total Health.