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

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.