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"The goal of co-designing is to create a better experience for the whole care team: patients, families, providers, and staff. The patient experience is not the only focus."
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The Evolution of Patient-Centered Care and the Meaning of Co-Design

By IHI Team | Thursday, September 14, 2017

Tiffany Christensen is the Vice President of Experience Innovation for the Beryl Institute. In an interview with IHI, she shared her unique perspective as a lifelong patient and a professional patient advocate.

How has patient advocacy changed over the years?

I’ve been doing this professionally since 2007, and it’s changed a lot in 10 years. When I started out, laypersons advocating for themselves was a relatively new concept. We’ve had patient-family advisors since the ‘90s, but they hadn’t yet caught on nationally. It was still pretty rare 10 years ago to have an organization with patient-family advisors.

We’ve now moved from advocacy to patient and family activation. All of the terms we now commonly use — “patient- and family-centered care,” “patient and family engagement,” “patient experience” — weren’t really used 10 years ago. Now we have patient-family advisors working on quality improvement, sitting in on root cause analyses, and working in a very sophisticated capacity. We’re making good progress in caring about the patient experience, and bringing in patient-family advisors and community members as partners.

We’re doing a good job working with patients as advisors, but we’re still struggling to figure out how to partner with them when they’re actively sick.

What distinction do you make between “patient-centered care” and “co-designed care”?
I respect and believe in patient- and family-centered care, but it’s something we can technically do without a patient in the room. We can be patient-centered by thinking about how we deliver care from a patient-centered perspective. On the other hand, you can’t co-design without a patient, family, or community member as a part of the process. That’s the big distinction.

The co-design language is new enough that people use the term to mean different things. In the way I practice co-design — whether it’s at the bedside or when working on policy — you need a patient, family, or community member as part of the process.

I use a model that we have seen very successfully implemented on a global level through the Point of Care Foundation in the UK called experience-based co-design. It’s a very structured process where we identify a problem by speaking with our patients, families, and community members.

Co-design means not coming in with assumptions. It means opening up our minds, and saying, “You tell us where we need to start. What’s the most painful part of this process for you? What do we need to change?”

This is in contrast to what we often see with patient-family advisory councils, for example, in which the staff comes to the council assuming that they know what bothers patients and families or what matters most to them. “We already know what the problem is. Now we want you to tell us what to do about it.” When we start with our assumptions, we may or may not hit on the most important or meaningful issues for patients.

Taking that approach is bound to bring to the surface some surprises.

Yes, that’s the beauty of it. And there may be surprises, but there are often simple solutions to those surprises. The key priorities patients and families typically describe tend to be things that aren’t outside the box. Some real examples include things like hanging clocks in ICU rooms, re-designing mammography gowns, and changing the time housekeepers empty trash containers on the unit. None of these are very costly or dramatic changes, but patients and families have said they mattered. It's also very unlikely that ideas like these would have been identified or implemented without the co-design process.

How would you describe the provider side of co-design?

The goal of co-designing is to create a better experience for the whole care team: patients, families, providers, and staff. The patient experience is not the only focus. The “co-” part of co-design is essential.

Co-design is exciting and important because working in health care is incredibly challenging in today’s climate. Burnout is a huge issue. We know that the provider experience is equally important to the patient experience, so together we have to figure out the co-design solutions that improve the work and the environment for everybody.

Part of the process is figuring out realistic priorities. What do we want to address, and what are the realistic ways to address them? When we work with patients and families in co-design, we’re clear that we may not be able to change every single item they bring to the table. We set expectations early on. We say, “Here’s how the process works. Here are our limitations” with regulations, the budget, staffing, etc. We may not be able to build a new building because of budgetary issues, for example.

The goal is not to have patients and families tell us how to do our jobs, but to make sure we haven’t missed important issues because of our extreme familiarity with the environment that we work in every day.

How do you engage people who are skeptical or cynical about collaboration with patients?

In my experience, skepticism usually comes from some kind of fear. Sometimes it comes from a fear of working with patients and families. Some people are afraid of getting beat up for things they can’t control.

Some people are afraid that patients and families will learn things about how health care works that could be upsetting to them. This fear is an easy one to address because, once you start working with patients and families, it doesn’t take long to figure out they already know the issues. They may not know the details. They may not know all the context, but they’re certainly not walking into our health care facilities thinking that everything is perfect and everything is easy.

The fear of patients and families telling us all the things that we do wrong sometimes comes from experience. When we started [patient advocacy] work, we didn’t always structure these interactions well, so some staff and providers have had disrespectful interactions with patients and families. If that’s been their experience, I explain how this work has evolved. We now understand that we need to create a safe environment for patients and families and our staff and providers. We know how to put together an experience-based co-design cycle so people have their own space to vent, and then come together and work as partners.

The other skepticism I hear is when people say, “We’re already patient- and family-centered. I think about my patient and family perspective every day. Why would I need to bring patients and families in?” I’ve also heard, “Aren’t we all patients and families? Why would I need to bring in community members?”

To that, I say that what we’re partnering with patients and families to bring in what I call “the eyes of innocence.” Once you’ve seen what goes on behind the closed doors of a health system or a hospital, you are no longer naïve. We partner with community members to bring in people who aren’t familiar with the complexity of health care because they see things from a very different perspective. They see the forest through the trees. They see what we, as people who work in the environment day in and day out, don’t see.

For example, when I served as a patient-family advisor, I remember the hospital was trying to rename their Rapid Response Team to make it more patient-friendly. The idea was to encourage patients and families to call their own “Condition H” if they felt no one was listening to their concerns. It was a great idea. The problem was that there was confusion about what “Condition H” was. Most people didn’t know that “H” stood for “Help.” Once we understood that, it made more sense. Our feedback was that “Condition H” sounded like complicated medical language. We recommended calling it something more straightforward, like “Call for Help.”

Given the pressures and constraints that so many clinicians face, how can they build a trusting relationship with patients when they often have so little time with them?

This is a huge challenge. I don’t want to diminish how hard it is to come into an exam room or a hospital room or an ER bay and try to connect with someone in a matter of seconds. I would say, though, that there are two things providers don’t do consistently that could help: 1) match the tone of the patient and family; and 2) acknowledge what patients and family members say.

For example, I was recently in the hospital, and I had two people come into the room and tell me that they were going to do a blood gas. Prior to that, no one had told me I needed a blood gas. I didn’t know why I needed it, so I was confused and somewhat irritated by that.

I’ve had many blood gases in my life, and they’re incredibly painful for me. After we talked, I eventually understood why they needed the blood gas and consented to having it done. Ironically, it was the best blood gas I’d ever had. The pain was minimal. They did a fantastic job. But because I’ve had so many painful blood gases done in my life, my body reacted to it, and I just started sobbing. I know that didn’t make sense to the two people in the room. They were probably confused about why I was so visibly upset.

Instead of matching my tone, instead of acknowledging what they saw, they instead continued to talk to me as if I were not crying. They continued to talk to me as if it was a cheerful moment. That was very disorienting for me. I have experienced that multiple times as a patient.

To help align you with a patient, to help them feel more comfortable with you, gauge their tone. Are they cheerful? Then match that cheerfulness. Are they low energy? They may not be feeling well, so match that quiet energy.

It’s also important to acknowledge what you see. “You look like you’re in pain.” “You seem to be upset.” “I see that you’re crying. Is there something that you want to tell me?”

Those small acknowledgements of what’s happening in the moment builds trust, allows that patient to see that you care about them. I am much more likely to trust somebody who has acknowledged what they’re seeing.

You talked a bit about burnout earlier. Have you experienced it? How can we address it and prevent it?

When I became a professional patient advocate in a hospital setting, my colleagues worried that I would be so empathetic to the patients that I may not be able to do my job. I was shocked to find that it was quite the opposite. I struggled to keep up with the daily amount of work, and the level of emotionality that I was experiencing from patients, families, and staff. I found it discouraging that people were routinely disrespectful and unkind. When you work hard day in and day out trying to do your best, and people don’t seem to appreciate that, it’s hard to go into work every day. It did not take me long before I began to feel burned out.

There’s a lot of fatigue in health care. We all wear a lot of hats. We have very full schedules. Many people in health care work very long hours. Then, on top of that, you’re working in an environment that is emotionally stressful and deals with life and death circumstances.

There are a few things we need to do to address burnout:

  • Our leaders have to invest in improving the staff experience. They have to support their staff — this means, for example, putting enough nurses on a unit so we’re not stretching our personnel so thin that they can’t cope with their workload.
  • We need to get back to thinking of ourselves as healers. I know this can be easier said than done given all the pressures and demands on us, but there is a level of satisfaction that we’re missing out on when we look at our computer monitors, and not into the eyes of our patients.
  • We need to build a culture that helps us to support each other and honor the sacredness of the work. There is so much stress in health care and we sometimes take that stress out on each other. Sometimes we forget that what we’re doing is so crucial to the lives of the people we serve.
  • Finally, we have to activate our patients. Activated patients who are able to take some responsibility for their health and health care can help take some of the burden off of those delivering the care. As we continue work at engaging patients and families and improving patient experience, we also have to help those patients and families become more involved members of the health care team.

Note: This interview has been edited for length and clarity.

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