In Their Own Words: the Only Way to a 3-D Patient View

It’s the end of the year, and for my last post in 2010, I want to talk about patient narratives – and how important and transformative it is for people to contribute their own health information.

If you don’t know about physician and filmaker Gretchen Berland, MD, you should. I wasn’t aware of her extraordinary work before getting the news that she received the Esther Pohl Lovejoy Leadership Award for 2010 from Oregon Health & Science University. This award honors a graduate (OSHU ’96) who demonstrates exceptional leadership and service to the medical profession on a national or international level.

This is a remarkable woman. The day after receiving her second Emmy (for NOVA films) at the age of 28, she enrolled at OHSU and became a doctor. During her residency and then on faculty at Yale, her unique filmaker perspective found where healthcare falls short: gaining the patient perspective. In her words,

Institutions tend to define people in one dimension, and there is sometimes a discord between how the system sees them and how they see themselves.

Dr. Berland gave patients (troubled teens) a camera to tell their story – their way. She says “Looking at the footage they shot gave me three-dimensional insights into their lives.” She’s continued to make participant-filmed video, with profound results. She gained wide acclaim in the 2004 documentary, Rolling, which tells the stories of three people who use wheelchairs. The film was shown on PBS and garnered awards from the Film Society of New York and the Lake Placid Film Festival.

As a primary care provider, I often imagine learning more in 5 minutes with a video of a patient in their home than hours of interviews in an exam room. OK, it’s not practical and the privacy officer would have my head on a platter…but Dr. Berland knows it’s true.

So how do we get to 3-D? How do patients and families share information that has meaning and impact?

Here’s a start to get to a 3-Dimensional Journey to Participatory Medicine.

A “Patient Info” Dashboard with a picture, nickname, family/caregivers, preferences.
Secure email.
Secure email with attachments.
Shared progress notes.
Shared problem lists.
Shared care plans.
Patient-entered data.
PHR links to health-related social networking.
Video visits.

Have a healthy and happy New Year with your friends and loved ones,

Sue

Prediction with Open Medical Notes: A Grand Slam for Patients

OK, I’ll admit it. I’m a Red Sox fan. I was born at Beth Israel Hospital, grew up near the Orange Line. So I’m not in bad company when rookie Dan Nava hits a grand slam on his first at-bat (and first pitch!). But that’s not the only great story in the Boston Globe lately.

The Open Notes project I talked about here and e-patients.net posts of here, is a Robert Wood Johnson Foundation project studying patient access to medical records and providers’ notes.

I’ve been studying this subject, interviewing patients who have been able to download a lot of their electronic record from the Veterans Health Administration (the first “version” of MyHealtheVet, VA’s personal health record). I haven’t completed all the focus groups yet, but so far the discussions have been exciting and illuminating. Open Notes is a much larger study, so my contribution is likely to pale in comparison. Nevertheless, I’ll throw some predictions out there on this field of study:

1. Once patients see the real thing, they really like having access.
2. They expect medical jargon but it doesn’t get in their way: they just Google the words and abbreviations.
3. Some content surprises – at first – but then people deal with it.
4. Many say content is wrong. They want it corrected.
5. Many feel it helps them “manage” (our word, not theirs) their medical problems better.
6. It’s uncommon for a person to be distraught.
7. Many feel more prepared for in-person visits.

In other words, shared health records/data is a Grand Slam!

While the fans might be wild and happy, the players (doctors and other record ‘writers’) won’t all be happy about it. It will be a GAME CHANGER. How do you think our notes will change?