NOTE: This post is intended as a companion post to the session recap from Doctors 2.0 & You here. Untitled

I recently published a recap of Doctors 2.0 2013. I’m no Bob Woodward, but I tried to take a neutral observer role in relating the content of the panel. When I asked for feedback, my friend Liza suggested my personal passion around the topic was missing.

challenge accepted

In early 2013 I wrote to conference organizer Denise Silber and suggested a panel discussion around patient-designed care. It was a nascent idea then, largely still is.

I keep telling this running joke (and it keeps flopping. Note to self…): there’s probably a German word for that concept of once you understand an idea, its hard to imagine a time when you didn’t think that way, and it probably has 7 syllables.

Yeah, not that funny, is it? But the point is still true. The term patient-designed care came out of the first Medicine X IDEO Patient Design Challenge. Through Stanford’s Medicine X program, about 40 conference goers spent a day collaborating with ePatients and IDEO designers. I was lucky enough to observe. As the group was wrapping for the day, one of the designers remarked:

"I think this is the first time we’ve had the people we design for participate in a design challenge. We hear a lot about patient-centered care…” one designer started, “but that’s kind of a hollow phrase. What we discovered today was something new: Patient-designed care”.

The idea has grown, and is still pretty simple. Involve patients in designing anything affecting them. It might be a process, or tool, or space, or service offering, or strategy. Whatever it is, make sure there are patients on the committee.

How could it be any other way?

Regrettably this is still a pretty novel idea to the healthcare industry. I’m as guilty as anyone. I can think of dozens of projects during my time working in hospitals where we set out to do patient-centered things. We had the best intentions. Let’s make this bill more patient friendly… or Let’s add patient-centered training to our new employee orientation.

That kind of work, despite noblest intentions, is inherently based on assumptions. We made assumptions about what patients would want. They’ll love this furniture… and If I got this bill, I’d want it to say….. Don’t get me wrong, that’s not a bad start. It’s still an empathic approach. But why didn’t we involve patients, asking them about their experiences and to share their suggestions?

It’s time to start.

I’ve been using the phrase patient-designed care for almost a year now. I’ve also been trying to put it into practice. For example, In 2012 I was still in an operations administration role in a hospital. When it was time to schedule an off-site team meeting, I invited a former patient to come speak to our group and participate in the meeting. I met the patient when she came to my office to voice a complaint one day. She went on to become a strong proponent of our department.

In my role helping lead a start-up focused on staff and patient experience, we’ve included ePatients in all of our project proposals. We sneak them in as experts consultants, or sometimes directly identified as ePatient experts.

On a personal level, I count many ePatients among my personal board of advisors. (How fun is that term? You should have a personal board of advisors too, if you don’t already.) When I’m stumped and need to bounce ideas around, I call on my friends. When I’m excited and need someone to share with, or poke holes in an idea, I call on my friends.

Here’s the bottom line: I cannot, anymore, imagine doing anything in healthcare which affects patients without involving patients. And that’s the idea I wanted to explore at Doctors 2.0 this year.

My hope for the panel was an honest conversation involving ePatients. I knew some of my Medicine X friends would understand the term. And others, despite doing participatory design work, may not know it yet. I wanted us to get representatives from those groups together.

Largely, I think we pulled that off. The discussion was made richer and more well rounded by our moderator, Michael Seres. Michael is an ePatient - sometimes he prefers iPatient - who takes an active role in designing his care plan. Liza Bernstein, a student of product design, understands the concept inherently. She sees how patients can play an active role in the design of processes and things affecting patients. Kathy Apostilidis is using her patient-acquired expertise to participate in designing European policies.

What’s next?

Maybe we need to find that german word I jokingly alluded to earlier. It’s hard to convey in a talk or panel discussion something so profound (and yet so simple). From my perspective, the next big hurdle is getting healthcare provider organizations (hospital, health systems, clinics, etc) to really embrace this concept. I’m unsure if we need to increase awareness, or reduce fears, or facilitate the formation of formal ePatient hospital advisors.

Hospitals have focus groups and patient advisory boards today. Those are admirable starts. But doesn’t it seem silly to have a meeting about improving the experience of a department or facility without including the people who have been through as patients? It’d be like going to a restaurant where the chef assumes what you want to eat without asking.

Panels like ours help start the conversation. And they broaden it. While I’m focused on integrating patients in hospital process and service design (strategy), others are focused on policy, or research or treatment plans. We need to have these conversations and I’m really glad Doctors 2.0 & You and Medicine X are among the first programs to host these dialogues.