To start a movement, tell a story

I was recently asked to talk about why I became an advocate for change in healthcare. I could have shared statistics about how patient engagement leads to better outcomes and safer care, but instead I told a story about an evening I had in a hotel bar that changed my life.

My son was about nine years old, and I was attending a training program for parents of children with complex healthcare needs. I was exhausted and overwhelmed, having spent years doing whatever the doctors told me to do—refilling prescriptions, booking appointments, and organizing health records into huge binders that I carried with me to every healthcare visit. On the outside I looked like I had it together, but on the inside, I felt anxious and afraid. Would he ever learn to walk? To read? Would he grow old enough to fall in love? There was so much that wasn’t clear. The fear left me disconnected from myself and from him.

The training involved an overnight in a hotel and I was so happy to get away. In the evening I sat in the hotel bar with another mom, and I made a comment about how hard our lives were. “Cristin,” she said, “if you want me to listen to you talk about how hard this is I will, but if you want to talk about how to make things better, I’m really much better at that.” I was flooded with embarrassment. Over the next few days, the shame turned to hope. How might things be different if I stopped focusing on how hard and scary things were, and instead focused on what I could do to make things better?I

I told how within a year, my life had completely changed. I was able to find a diagnosis for my son—something his geneticists hadn’t in 9 years. I had advocated for a better school and for activities where he could make friends. I connected with some strong, fun-loving parents who faced challenges but didn’t let it define them. We got organized with other families and went to visit our politicians in Washington to make health care affordable, so that families like ours could be safe and healthy. It felt so good to get in the driver’s seat – and it’s something I want to help others to feel.

In healthcare, we talk a lot about evidence. We believe that by telling people the facts, they will change how they thinkand more importantly, what they do. We talk to their heads, using reason and logic. Facts matter when it comes to healthcare. Scientific inquiry has helped us live longer, healthier lives. But why doesn’t knowing the facts always lead people to change?

“It’s not a movement unless someone moves,” it is said. We can’t think our way to action. Knowing is important, but at some point, we must also do. Finding the strength and courage to take action almost always requires more than statistics and facts.

Activists, advocates and change agents are increasingly using their own personal stories to awaken leadership in others. Stories speak the language of emotion, the language of the heart. They not only teach us how to act, but also inspire us with the courage to act. Our stories help us translate our values into action by accessing our emotions.

How we tell our story matters. I’ve been to conferences and meetings where a patient or family member was there to tell their story, but rather than moving people to change, the story left listeners feeling accused, resentful or frustrated. I’ve done it myself. Telling my story was hit-or-miss, and I couldn’t quite put my finger on why it sometimes worked and sometimes didn’t. And it wasn’t just from a stage; I would use personal stories in meetings and sometimes got a great response, sometimes lost the listeners entirely.

A couple of years ago I learned about a specific way to use my story to create change. In community organizing, public narrative is a practice in which we exercise leadership by linking our own story to the stories of others and to the story of what is needed in this moment. Public narrative involves motivating others to join you in action on behalf of a shared purpose. These stories have detail and structure. They paint a picture of a problem, a choice and an outcome. Listeners see a way forward and are are moved. Told well, moving stories start movements.

So when I told my story recently, I knew that data and evidence was important. But it wouldn’t be enough to move the listener to action.

How do you use your story to create change? Does it feel too personal or inappropriate? What moments show rather than tell what you care about? Learning to craft your story is a leadership skill. Listen to the stories that are being told and see how they affect you.

Do you want to learn how to use your story to create change? I’ll be teaching a class in Stockholm on June 12, 2019. The aim of the program is to help change agents, improvers, advocates and activists learn the skill of using their story of self to connect with others to awaken leadership and engagement. Find out more about the one-day program Public NarrativeUsing story to recruit leaders and build relationships. Contact me for a discount code for my blog readers and other friends. If you’re in Sweden, I hope you’ll join me and my colleagues.

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The tyranny of Norman doors

As a person who considers herself often on the threshold — though of what I’m not always sure — doors and doorways catch my attention. They create a boundary between here and there, allowing us to be in one place while looking into another

One particular style of door fascinates me. It’s best summed up in this photo of a door at my office with its many pieces of flair. It has a button with a key on it to show us where to unlock it, and a sign and arrow telling us to do so. There is another lever that releases the lock but should only be used in an emergency, hence the running guy icon. There is also a button to open the door and hold it open, for example if one is wheeling through a cart or wheelchair; this button needs to be held open for a longer-than-obvious period of time, so it too has a note on it telling us how long to hold it. And because we frequently trigger the alarm by standing with the door open too long, there are not one but two signs in English and in Swedish telling us to get a move on. It’s a wonder we ever get out.

Yesterday I learned that this type of door has a name — the Norman door.

A Norman door is a poorly designed door that confuses or even tells you to do exactly the opposite of what you’re supposed to do. It was named after Don Norman, the researcher, professor and author of The Design of Everyday Things, the bible for the field of human-centered design. This video, It’s not you. Bad doors are everywhere. tells the story of Norman doors and the principles behind good design.

It turns out that through their design, objects subtly communicate instructions to people on how they should be used. Certain handles just feel like they should be pushed, and others pulled. Bad design sends us signals that are confusing.

And when things go wrong, it’s usually the user who is blamed, not the designer. Sometimes we even shame the user, as in this Far Side classic. I remember a coffee shop in my old neighborhood that had this panel taped to the door because so many people opened the door incorrectly. But it wasn’t the door’s fault, it was ours.

In the film, Don Norman reflects that “if you continually get it wrong and if other people get it wrong, that’s a sign that it’s a really bad door.”

Swedish designer Sara Tunheden shared the video this week and challenged those of us working in health care to think about the services we deliver and design. Are they really as great as they think we are, or are they Norman doors?

As a person who works within the health care system to improve it, I know I want patients and families to experience health care as a place of partnership, agency, responsibility, power and health. As a patient and family member, sometimes I can get there. Though often the door is surrounded by confusing and unintuitive mechanisms that keep me scratching my head, struggling needlessly, or even worse, locked out.

Good design, according to Norman, offers discoverability (the ability to discover what operations one can do) and feedback (a signal of what happened). For those of us in a position to be offering a health care service, we can ask ourselves some questions:

Are the doors people need to pass through to reach us easy to open, or are they overloaded with gatekeepers and signs in the forms of wait lists, complicated referral or intake processes and inefficient booking systems?

Does the entrance feel truly welcoming for everyone, regardless of race, gender, sexuality, language, intellectual ability and culture? Are people treated with dignity and respect, or as if they should be grateful to have been let in at all? Does the door actually open when the person does all the things they are asked to do? And if it doesn’t, do we blame — or even shame — them for not getting in?

In my experience, we spend a lot of time thinking about what we want patients and families to do, how we want them to behave and act. This isn’t just about access, but even about following our instructions, being engaged, and taking responsibility. When they don’t do that, maybe it’s worth considering that it there may be a Norman door in their way.

Please subscribe, share or comment. I’d love to hear what you think.

Hello, hello

It’s been so long since I shared any writing here that I need to say hi before diving into my own stuff. Hello. How are you? What’ve you been up to? Are you taking care of yourself?

Speaking of hello

Last week I took my son to a pre-surgery appointment at the hospital. We hadn’t even reached the main lobby and I was feeling anxious and stressed about the upcoming surgery, and frustrated that I had to take him out of school for a visit that we probably could do over the phone. A cloud of general dread was also hanging around mostly because of lingering emotions hanging around from the six weeks we had spent there last year, triggered by the smell of the parking garage and the sound of the music in the elevator hall. Let’s just say I was not my best self.

And then something happened. Sitting on stool off to the side behind the front desk, a janitor was chatting with the receptionist. As we approached, he looked at my son and greeted him by name. “Hey buddy, how are you doing?” I hesitated for a second and the man looked at me and said, “I remember him from when he was here before.” It was really remarkable.

While it’s really impressive that he remembered us, I thought even more about the fact that he said hello at all, and how that made me feel. Saying hello can seem like a token transaction, but really it’s a way to let others know that we see them. My shoulders loosened. I was reminded of the importance of kindness.

Hälsa means both health and say hello

There is a beautiful word in Swedish — hälsa. As a verb, it means to say hello or to greet. As a noun, it means health. The words are connected etymologically from the word hel, which means whole and even perhaps from helig or holy, sacred. To say hello is to wish someone wholeness and wellness. How wonderful to be reminded that all these words are connected! A simple hi can say much more than we think.

Bringing back hello to healthcare — The 10/5 Rule

I remember reading about hospitals in the US launching campaigns to bring back saying hello in health care environments. Inspired by the service industry, they began adopting the 10/5 Rule, or the Hospitality Principle, to help instruct their staff on how to provide courteous service through greeting. The 10/5 basically recommends that when within 10 feet (3 meters) of a guest or patient, staff should smile and make eye contact; when within 5 feet (1.5 meters), staff should say hello. This also means that staff should stop their conversation with each other in preparation to greet.

What does this mean for health care?

The 10/5 Rule, with its roots in companies like Walmart and Disney, can seem like an American attempt to commodify courtesy or institute robotic friendliness. At the same time, I know that my experience as a caregiver and patient matters. When I’m treated well, I also treat others well, which must be better for staff in the long run.

So much of what we’re doing in hospitals these days when it comes to improvement is really expensive. New buildings, new IT systems, more staff. As a parent and patient, I know what feeling invisible, afraid and alone feel like, and sometimes I think healthcare is missing out when it focuses on the big ticket items and skips over delivering common kindness.

Personally this has gotten me very curious about how I say hello, and what it means to those around me. I’m going to be experimenting with how I can sincerely show the people around me that I see them and care about them. I’ll keep you posted. Until then, bye!

Other resources for “Say hello” campaigns

Implementing the 10/5 Rule in Nursing homes

A video from Children’s Hospital of Pittsburgh

Here’s a very enthusiastic training video from ASMMC Medical Center

Reflections from Tufts University professor on the power of saying hello from Psychology Today

Amy Rees Anderson shares background on the evidence of saying hello from Forbes magazine.

Getting off on the wrong foot

Skärmavbild 2017-04-03 kl. 19.29.30.png“Louis, this feels like the beginning of a beautiful friendship” says Humphry Bogart as Rick Blaine in Casablanca. I don’t recall what Louis had said or done to prompt Bogie’s remark, but it certainly wasn’t whatever happened to me today when my son’s new doctor’s office called.

Walking to the bus on my way home from work, my phone rang. Blocked caller ID, which for me means only one thing—health care. I answered despite walking on a dusty, busy highway with a nearly dead cell phone. “Hello, this is the XX office at YY hospital. Your son had an appointment today at 1pm. I’m calling to find out what happened.”

My mind started racing through the pile of mail on the kitchen counter. No, I would have remembered if we had been “summoned,” as I like to call it; in our new country, the overwhelming majority of health care follow-up and specialty appointments are scheduled by health care letter that lands without warning, sometimes with as few as three days notice of the appointment but usually about two weeks. The assumption must be that people are happy to take off work to go to these appointments, because the process of rescheduling them usually involves finding one’s way to a phone during a very limited “phone time” window, nearly always during business hours. Busy signals, call back queues–and most perplexingly, sometimes the only option is to cancel the appointment and then wait for another summons, hoping that the next appointed time spat out by the scheduling roulette is better. If not, see step 1.

But back to the dusty highway. Later searching of the kitchen counter pile confirmed that I had in fact never received notice in the mail, and I confidently said so. “So you’re saying you never got our letter? It was mailed out on March 14,” the nurse said curtly. Clearly, she didn’t believe me. “Well, I guess we’ll have to reschedule it,” she said. “I guess so,” I said, equally incredulously. What exactly was she hoping I would say? “No, let me fly counter-clockwise around the globe and reverse time?” She said she’d send a new time by mail, and I managed to get her to schedule the appointment right then, to avoid having to move heaven and earth at work at a later date. She curtly said she’d still send me the mail, and follow up with a text reminder. “Fine, do whatever you want.” I’m sure she could hear my eyes roll.

I’d hazard a guess that hundreds of thousands of health care visits were missed around the globe today because patients didn’t know they had one, didn’t understand why they needed to be there, or found the rescheduling process impossible. Or maybe because they hadn’t even had a chance to open the mail. Hundreds of thousands of hours of wasted clinic time. Irritation and suspicion all around, at the tender point in the relationship when we should be building trust and confidence. 

Patronizing finger-wagging and mistrust on her end.  Irritated petulance on mine. Is this the best way to start a beautiful friendship? I don’t think so. I wonder what Bogie would say to that.