Tag Archives: PHR

Open Notes Interview on Health Literacy Out Loud

I had the pleasure to do a podcast with Helen Osborne on OpenNotes, the online sharing of clinical notes with patients, and its relevancy to health literacy. Helen is well known in the world of health literacy, as a consultant, educator, and speaker. She is also an author, including the award winning Health Literacy from A-Z.

Open Notes: Building Transparency, Trust, and Better Health Outcomes (HLOL #154)

When Helen and I first talked, she had some questions on whether or not Open Notes was a good topic for her podcast. We talked about research showing that people who read their doctor’s note feel empowered and more control of their health, and better prepared for their medical appointments. I shared findings from our VA study, about how people think access to notes is a communication tool, and instances where patients improved the quality of their care by reading their notes.

Transparency leads to trust, and trust leads to better communication and better outcome, so it really behooves us all to be advocates.

Improving health literacy is more important than ever. Now that digital access and use of technology is essential, the worlds of literacy – from all angles and including technology – must come together. Broadband and technology proponents use the term “digital inclusion”, and literacy is but one component of that. Having unified language within the literacy and inclusion arenas would be highly valuable.

Thank you, Helen, for the opportunity to bring Open Notes to Health Literacy Out Loud.

Transcript of the Podcast

HIPAA is 20 – 10 million can get doctor’s notes online

Happy 20th Birthday, HIPAA. You are still misunderstood…

Do you know what HIPAA stands for? It’s the Health Insurance Portability and Accountability Act. Go to a doctor’s office, and it may cited as a wall keeping you from your record. Yet that’s not correct, and HIPAA just doesn’t get any respect.
opennotes_map_8.2.16-copy

The P means Portability. Meaning, being able to port or connect or carry health information from one place to another. That one place so important to people is THEM. Getting access to THEIR notes – including clinic and hospital notes written by doctors and nurses.

It’s great to see that through the OpenNotes project, 10 million can access to their clinical notes online. That would be through secure patient portals. It’s mostly larger systems, like the VA and Mayo and Beth Israel Deaconess. There’s a lot of room to move, though, since people largely go to smaller places or go to multiple places to get their care. So there’s a lot to do. If we look at the map of where we are today, there’s lots of pockets lacking note sharing. Sadly to say, Maine, my own state is one of them.

I’m having formal and informal discussions, and really have just started the conversations. As more evidence is coming in, people will take more notice of it. And since Maine is a great place to collaborate on quality (Quality Counts) and consumer engagement (GetBetterMaine) and electronic information sharing (HealthInfonet), I couldn’t be more pumped to get this party started!

The mission is simple: add notes to patient portals, no cost for sharing, have people read them, partner with clinicians!

I’ll be sharing evidence on experience and impact of sharing notes. There’s been recent papers on the effect of notification to go look at notes, recall to refill medications, and some fascinating work coming out of Portland, Oregon, on the impact in mental health – from patients and clinical team members. Stay tuned!

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.