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,