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Patient Designed Care or Doctors 2.0 & You redux

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.

The one where I sketchnote some big personal news...

I don’t mean to toot my own horn, but let’s be honest, it’s hard to top sharing news through the media of 80’s sitcom themes. With that bit of self-imposed pressure in mind, I’ve been sitting on some news I’m excited to share. The problem has been: how to share it? My wonderfully supportive and creative wife Susan, suggested a sketchnote. So, without further delay, I present to you Nick’s update sketchnote

sketchnote: making a move

I know. I mean, I’m modest, but it’s pretty incredible, right? Now, now, please don’t compare me to Monet or Picasso. Yes, I see the resemblance….

Oh. What’s that? It’s not good? The drawing doesn’t make sense?



You see the hospital, right? It’s the thing on the left. It kinda looks like a hospital right? Never mind, it’s a hospital. And then in the middle, that’s me wearing my smarty pants designer-style glasses. They don’t have frames, I’m told that’s something designers like. In the bubble, that's me thinking about empathy and innovation (a CF light bulb). And over on the right, those are people. They could be patients, families, visitors, or caregivers. After all, we’re all likely to be at least one of those things during our lives.

Now, see the arrows?

That’s right! In January 2013, I’m over-the-moon to report, I’ve accepted a role with Frontier Health Consulting. Frontier Health is a new startup consultancy and design firm focused on improving patient experiences. I’m coming in as the lead experience designer. It is, frankly, a bit of a dream role.

Along with a small core group, we’ll be working with healthcare providers to inspire and support patient-centered design, spaces, processes, communications and experiences.

Moving into the consulting world wasn’t an easy choice. It means leaving the provider setting where I had the opportunity to affect staff and patient experiences directly. But the truth is, right now in the industry, those opportunities are too few and far between for someone who thrives on them. And, we need that focus more than ever. We’re making the turn, and, as an industry, acknowledge  the importance of patient experience; but, today it’s rarely something provider organizations dedicate entire roles and teams to.

For me, Frontier Health represents a chance to have a bigger impact, and on a bigger scale. We’ll be inspiring, coaching and supporting whole organizations. We’ll be working with patients as expert resources. And, if we are successful, we’ll be touching a lot more lives, more quickly. I can get behind that!

What’s all this mean for Susan and I logistically? In the next few months, we’ll be slowly migrating back towards Richmond. We’re excited about that, although we’ll be sad to leave Charlottesville and our friends here. But, as we pointed out when we moved here, we’re only an hour away.

And, because I acknowledge 80s sitcoms are still the best means to convey anything, I leave you with this gem…

Confirming what we already know: eMail is impersonal, draining and outdated

According to Mashable's Sarah Kessler and Boomerang*:

Baydin’s average email game player deleted about half of the 147 messages he or she received each day. Ninety minutes of the two hours he or she spent on email each day went to just 12 messages.

Increasingly, I'm less and less a fan of email. The root of the problem is also the root of the word - mail. Because it's an electronic form of an old modality, we think of it in old context. We spend a lot of time reading, sorting and composing email. We put a lot of pressure on getting email right. Pretty soon, we've spent more than two hours on email.

What's the big deal, why is a nice cordial greeting and a thoughtful message such a problem? Am I really this grumpy? Not at all!

What do you do? Oh, I sort email. 

What I dislike about email is how it has become the work product for so many of us. Who's job description starts with: responsible for managing their Outlook inbox. Would you take a job that did say that? Yet, it's what so many of us do. eMail has become, largely, the product of knowledge workers, and that is dehumanizing.

Take your primary care doctor, you probably imagine them in a white lab coat, next to a patient, providing care. Guess what, they are probably spending over two hours of their day mired down in email just like the rest of us. Where's the care in that? From their perspective, where is the join in doing two hours of email. I doubt it's why they become a doctor.  (And for a bit of levity, Dr. Mike Sevilla shared this slightly less scientific "infographic" about a doctor's day).

Hey you, stop what you are doing and deal with me! 

Sending someone an email is sending them a task. And, according to the folks at Boomerang, it's pretty complicated task. We don't have control over our inbox. Anyone can push a task on the top. You have to read it and act on it, even if the action is to delete the note. That's a pretty impersonal thing to do, even if it's masked in the prose of a long-hand style letter.

Some alternatives to eMail:

  • Text messages and Twitter DMs - since they aren't rooted in old traditions, people are freer to get to the point and move on.
  • Google Docs, Dropbox, iCloud, SharePoint - eMail is an ineffective way to share files. In effect, it copies them, forking their contents and versions across each recipient. Instead, we can use document collaboration and management tools.
  • Facebook and Twitter - low barrier to messaging and low barrier to consumption. You don't have to act on a facebook or twitter post, you simply read it and move on. There's no filing, replying (unless you want to), sorting, deleting, etc. Time it takes to check facebook: 10 minutes. Take that eMail!
  • Secure portals (EG: Electronic Medical Records w/ patient access) - sometimes you need to send a note and sometimes security and privacy matter. Keeping health-related dialogues within the patient record also help keep the record contiguous.
  • FaceTime, Skype, Google Plus Hangouts - hey, at least its more personal than email. Just don't call me before I've had my morning dose of caffeine please.
What do you think about eMail?

*Boomerang is apparently a commercial service add-on for Google's Gmail.

eMail Info Graphic

Want People to Return Your Emails? Avoid These Words [INFOGRAPHIC].

Elsewhere: "I fear to be a patient" by Don Berwick

For my elsewhere series, I like to highlight content from others from around the web. Usually, I preface those blurbs and links. Sometimes something is so powerful it can and should stand on its own. Don Berwick is a pediatrician and the current Administrator for the Center of Medicare Services (CMS) by appointment of President Obama.

Its not what you do, its why you do it

My new friend Ashleigh, a branding/experience/design guru, recently shared a concept with me. She told me about the golden circle theory from Simon Sinek. He says: "people don't buy what you do, they buy why you do it." Sinek cites Apple as a prime example of the golden circle way of thinking. I'm pretty fond of the little California design company as well. If you've run out of Ambian and read this blog as a substitute before, then you'll know I frequently draw on Apple as a source for inspiration in healthcare innovation.

This isn't a tech blog so I'm not really interested in how many thunderwire ports the new iWidget has and why google's robophone is superior because it has 1.21 gigawatts of magic dust inside. Sinek takes the same approach, focusing on the culture of Apple (and others like the Wright brothers and Martin Luther King, Jr). Sinek says most of us, and most companies, think from the outside in. We think about what we do, then how we do it and finally, maybe we get to why we do it. In the video, Sinek argues innovators like Apple reverse the process, they think about why they do what they do and move outward towards what it is that they do.

Sinek says Apple first says 'we exist to think different, to make things better, we are a design company who happens to make easy to use computers.' As consumers we identify first with their core beliefs and secondly with their products. We think 'I like to think outside of the box too!' Apple could innovate, design and produce running shoes and they would probably be equally regarded as innovators in that space. It is not what they do, but how they do it. (I'm practicing, Sinek repeats that line over and over, its and effective technique.) He counters with Dell's attempt at making an MP3 player to compete with the iPod. Consumers reacted by asking ' why would I buy an MP3 player from a computer company?'

An un-named Wall Street analyst quipped General Motors is a "hospital that makes cars on the side." While that quote is clearly drawing attention to the employee benefit structure GM has cited as a source of financial hardship, it is nonetheless poignant. Could anyone say the same thing about a hospital or other provider - that they are something else first and care givers on the side?

I optimistically think most hospitals and providers really are in the business of caring for patients. Find me a provider who doesn't list patient services as the largest source of revenue. A senior hospital executive once told me he liked working in healthcare because you can run a cafeteria one day, be an architect the next and work with doctors on the third day. While I think that kind of diversity excites a lot of people (myself included), those are all things we do, not reasons to do them. I believe most hospitals and providers really have the core beliefe they exist to care for people, to make them well and bring them comfort. So why are we so bad at expressing that as an industry?

I've written about "healthcare highway" before. A stretch of road which had billboards for every major provider in the area. Dan Dunlop regularly posts examples of hospital ads on his great blog. All of these, the print ads, healthcare highway, all talk about what the providers do. Some have the best cyberknife for brain tumor treatment. Others boast their rankings and awards. Others are the fastest. Almost none talk about why they do what they do. There is biology at work too; we can understand the sign that says "top 50 hospital", but we don't have an emotional reaction.

The message to consumers, Sinek says, is filtered through our biology. We are programed to understand the complex ideas and statistics these "what we do" ads throw at us. However, none of them go past our brain's basic stage of reading the words and understanding them. When companies and individuals talk about why they do something we register it differently. It is what we call a "gut reaction." We resonate with beliefs because, for many of us, we believe the same thing.

As always, I'm not sure what the solution is. There are plenty of ads for providers which talk about how much they care. I'm not sure that is the same thing in Sinek's world as talking about what they believe, what drives them to care. Sinek does give credence to the importance of the message in who you hire and how they ultimately help drive those beliefs. That resonates with me.

What do you think? Do you have any examples of healthcare providers who speak and work from the outside in? Are there hospitals who first say "we exist to change the patient experience, and we happen to heal people in the process?" Is the opposite happening? Are consumer's looking at ads featuring healthcare technology and asking 'why would I get care from a technology company?'