Tag Archives: Maine

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.
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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!

Atul Gawande on healthcare: 15 Cooks in the Kitchen and Nary a System in Sight

Maine’s Quality Counts! just had their annual conference. The statewide aggregator for health improvement, blessed with great leadership, partnership and a following, did a fantastic job getting 1,100 people there and bringing in phenom speakers.

A conference highlight was Atul Gawande @AtulGWande. Dr. Gwande, renowned in healthcare and quality circles, a surgeon at Brigham and Women’s Hospital, writer for The New Yorker magazine and best-selling author of 3 books (Better; The Checklist Manifesto; and Being Mortal: Medicine and What Matters in the End).

You can watch his full Quality Counts! presentation on YouTube:

Gawande talked about how healthcare has become so sophisticated, with 4000+ procedures and 6000 medications (is that all?), has tremendous science, with a capability to provide care to almost every person in every town. Yet we continue to drive up costs and resource use. He said that in 1970, for patients with pneumonia and heart attacks, it took 2.3 FTE of care. Now for the same patients, we need 15 FTE. 15 people who all know the plan. We’ve become specialists – but silo’d, and separated from communities. Most importantly, we don’t really have a system. We have to put health and healthcare together.

We have extraordinary technology. We are the best trained, over-educated, but with no sense of how it comes together.

Gawande spoke about how we’ve become obsessed with having the best components in healthcare. But patients may not necessarily care about living longer. How do we find out what people really want? Their goals? Priorities? Then he said an amazing thing: ASK THEM.

To do this, we as health professionals need to stop talking. We have to stop being “explainaholics“.

Some of his comments had inherent tensions. Data, measurement, quality, checklists. Then, he mentioned rigid rules for older folks in nursing homes. Rules for eating. Rules for movement. Rules for behavior. He noted what people want is to optimize their autonomy, as long as they can. Being able to eat a cookie (or have a refrigerator to open when they want) can be a simple solution with key rewards. Tangible and intangible, if you ask me.

Can we measure and focus on data, at the same time also really care? I think we have some ways to go. To measure what people value, rather than to value what we measure

Gawande had some great things to say about Maine, where we have some great improvement efforts and tremendous collaboration.

I look forward to curling up and reading Being Mortal, which I picked up at the conference. I don’t mind, though, that he slipped out of the Civic Center before he signed my copy. It was a treat to have him in Maine. To Lisa Letourneau, Director of Quality Counts: strong work, girl! 😉

Read – Jackie Farwell’s post, What Atul Gawande, medicine’s rock star, thinks about Maine health care

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.