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StopThoughts: how to improve healthcare through reverse culture shock (or why CBPR matters)

note. introducing a new category on this blog: < /stop> thoughts. < /stop> thoughts are those ideas you hear that make you stop, cock your head, blink a few times and then feel goosebumps while your brain goes in a different than you had thought about before. In < /stop> thoughts, I’ll share concepts, often loosely defined, which I think have massive potential to disrupt, improve or otherwise positively effect healthcare.

NIH

Yesterday, I had a phone call with someone who I’ve gotten to know as a big thinker around socioeconomic determinants of health. That’s a mouthful of a phrase which I love. During our conversation, she introduced me to the concept of Community-Based Participatory Research, or CBPR.

From Wikipedia:

Community-based participatory research (CBPR) is a partnership approach to research that equitably involves, for example, community members, organizational representatives, and researchers in all aspects of the research process and in which all partners contribute expertise and share decision making and ownership.

From the National Institutes of Health:

Community-based participatory research (CBPR) is an applied collaborative approach that enables community residents to more actively participate in the full spectrum of research (from conception – design – conduct – analysis – interpretation – conclusions – communication of results) with a goal of influencing change in community health, systems, programs or policies.

And, from AHRQ:

In CBPR, community-based organizations (CBOs) or groups (such as churches, church members, neighborhood organizations, community residents, and other social organizations) help researchers to recruit subjects. But they do more than that. Community-based organizations play a direct role in the design and conduct of the research study by:

  • Bringing community members into the study as partners, not just subjects.
  • Using the knowledge of the community to understand health problems and to design activities to improve health care (interventions).
  • Connecting community members directly with how the research is done and what comes out of it.
  • Providing immediate benefits from the results of the research to the community that participated in the study.

Why isn’t very hospital service conceived of, planned and executed according to CBPR?

I know, some of you rival my cynicism (and mine pegs the meter). You’ll say but Nick, these organizations are more interested in the almighty dollar… And, perhaps they are. But, wouldn’t they stand to make even more dough by building and providing services which communities actually want and need?

Fundamental to the idea of CBPR is moving past assumptions. Designers call this co-design. I’m proud to serve on the board of the Society for Participatory Medicine —an organization which, among other things, promotes the mantra let patients help! So, this idea isn’t entirely new.

Here’s the < /stop> thought:

What’s exciting, indeed the < / stop > thought here, is how simple doing CBPR is, and how doing it would inherently cause a culture shift in healthcare.

Imagine hospital executives, planners and clinical leaders spending as little as 10% of their time visiting the communities they serve, and asking “what needs do you have, and how can we, as your local hospital, fill them?”

Wow!

Take it as given that we’d see new, community and people-centered services. Maybe we’d see hospitals move to all organic, plant-based menus. Maybe we’d see them open medically supervised fitness centers. Maybe we’d see them move health services out of the hospital and into schools and churches. We might also see programs for mental health grow. Who knows‽

But we’d also see how the community would affect the hospital leadership and its culture. Do communities speak about health and wellbeing using the same terms hospitals use? Do most people in a community look, dress, act and present like hospital leaders?

Can you imagine the reverse culture shock?

And here’s the best part, I suspect, for those willing to embrace CBPR, it would feel good. Revenues will probably follow, but even better, I bet there’d be more joy for everyone involved and almost certainly better outcomes.

I’m reminded of how my friend Jason Albrecht closed his recent talk at Medicine X:

“Once you start this, you don’t want to stop. It feels good. It feels good because if feels right… it leads to a much greater sense of joy for everyone involved in the care process.”

—Jason Albrecht, MHA at Stanford’s 2013 Medicine X program

Together, we can make it better

There’s a former patient outside who needs to see you I’m on a call with my boss when Carol, one of our patient access team members, slips the note onto the desk I’m borrowing. My office is 12 miles away, but I’ve got a meeting in our urgent care center. I’m thinking to myself, ‘doesn’t like their bill….we took too long….whatever it is, I need to put on my mea culpa face…’

Brace for impact. I opened the door.

Do you remember me?

Instantly, I rewind three weeks to a day I hope I never forget.

I was sitting in the waiting room of one of our urgent care clinics; head down, cranking out email. When I need a place to churn through office work, I often like to sit one of our waiting rooms. It is a fantastic way to observe patient flow, the physical space, and general design components of the care environment. It is also a place with remarkably few distractions.

Ma’am, our nurse whispered, I’m sorry to say we think you would be better served by going to the ER. Truthfully, if I were not setting right next to the nurse when she said it, I would not have heard it. The patient’s privacy was, for all practical purposes, in tact. The disappointment, on the other hand, was quite palpable. I simply cannot go there, please don’t make me leave… the patient protested.

Why don’t you come to the back and lets talk about it

I followed them, at some distance. The nurse sat the patient down in a quiet, secluded area. With your history, and the symptoms you have today, we know the doctor is going to want to order tests we cannot do here. Really, you need the next level of care and we think you should consider going to the emergency room. Our physician stood looking on and agreed, the ER was the best bet.

Crestfallen doesn’t fully describe our patient’s reaction. The patient, head in their hands, began to cry softly. Please, I know it will take a long time if I got there and I really need to be seen… She also understood the practical reality of the situation – the doctors needed tests which can only be preformed at the hospital. Her disappointment was much about the situation as anything else. It is not that the ER is a bad place, it was just another stop on a long train ride of misery. Our patient accepted the rationale, but it didn’t mean she had to like it. And I didn’t blame this patient.

 

When I was in the waiting room at Johns Hopkins, almost a year ago today, I met K (whom I wrote about shortly after). K is a patient care coordinator. One of the things I remember most about K was how she addressed patients and visitors. She always positioned herself at their eye level. If you were sitting, she knelt down. If someone was standing, she stood. It sounds like a simple thing, but it makes a world of difference in how someone perceives your presence.

 

So I knelt. I crouched down to be on eye level with our sobbing patient. Ma’am, I know this isn’t the best news, let’s see what we can do to make a little better. We are gong to call the ER and let them know you are coming and to be ready for you….

 

I just want one day off! One day when I don’t have cancer, just one day then I don’t have to think about being sick. It wasn’t an interruption. It was part of the patient’s condition –her emotional needs were in as much distress as her physical concerns. This was a time to listen.

 

I cannot begin to understand how hard this all is, I offered. Would you be willing to tell me more about you story? She looked up with red, wet eyes and for the next ten minutes told about one of the most remarkable patient journeys I have ever heard of.

 

Almost two decades ago this new friend was diagnosed with a cancer. Rather than retreat into the world of sickness, she stabbed straight into the gut of their predicament. She started a support group, the first in the area. A call tree was constructed. I’ve been through this, the weepy eyes said, let me help you go through it to. That’s what she told others. Then she lobbied.

 

This remarkable person went to the state General Assembly and showed the scars from procedures she had and compelled law makers to amend regulations. The support group grew. There were t-shirts made, walks walked, funds funded; lives saved and some lost.

So when I heard this real, passionate, alive human say to me, I just want a day off, I could only understand a wisp of what that must feel like; But, it a wisp of something so pungent and acrid, that was all it took to plunge me into their world, even if only briefly. What do you say, when you hear someone’s story like that? The best lesion I have ever heard is to simply be grateful. Thank you, I started, thank you for sharing your story with me. You’ve reminded me why I come to work every day and the purpose of the work we do, and for that, I cannot thank you enough.

 

You have a good mother don’t you? We both laughed and I agreed.

You are the expert, you have been through this more times than I have. What should we do? Do you want to try and be seen here, or is the ER a better option?

 

I think I should go to the ER. But, can you promise me it will be better?

 

I can only promise you I will do everything I can, and so will every member of this team. Honestly, it was a non-promise. What do you say? Providers know better than to promise an outcome. Surely I, Mr. Beancounter, am the least qualified person in the room to make any guarantees.

 

When the rescue squad came for the transport, our patient asked me and our nurse for hugs. We exchanged warm embraces and helped see them into the ambulance.

I had a few more meetings that day, but couldn’t shake the sense I may have sent someone out with a promise I wasn’t sure I could keep. I don’t work in the ER, I’m not a doctor. When my last meeting wrapped, I headed over to the ER and asked if she was still in the department. Someone showed me to her exam room.

What are you doing here?

 

I had to come check in, and besides, you didn’t finish telling me about this support group you started? Would you mind if I sat and visited a while?

We continued to chat for several minutes until a provider came in. I wanted to respect her privacy and left.

I went home that night and told my wife about my experience. I told her how it genuinely reminded me why I work in healthcare. It’s easy to get lost in the daily work of being part of a large team of providers, staff and administrators. For must of us, we never fully lose sight of the mission and underlying human aspects of healthcare. Although we can easily forget how emotionally and spiritually challenge it can be to be a patient.

It’s three weeks later, and this amazing person is back in front of me asking if I remembered them. How could I not? I told her story to anyone who would listen. We borrowed an office and I invited her to have a seat and chat.

Like our previous encounter, eyes began to water. You saved my life, and I needed to come here and tell you that.

 

Well, people don’t say that to administrators often. For practical starters, we really aren’t involved with direct patient care. I thanked her for the unbelievably kind words and challenged them. I certainly did not, but I’m glad you are feeling so much bet…

 

No, you did, and so did the nurse here and your amazing staff. I was so sick that day and didn’t even know it. From the ER, I was admitted for ten days. I mean, I was really sick. I’ve just been cleared to drive again and I knew my first stop had to be here to tell you all that you saved my life.

That was all it took, I welled up too. Here we were, sitting in a borrowed office, sharing a box of tissues and connecting over a special moment.

She continued, I told you how I have been fighting for nearly two decades. One of the things I have learned about being a patient is how much control I am allowed to have. You and this team didn’t do anything to me…you asked me what I wanted to do.

 

I have this expression I used with all of my support group members, it is a reminder that we are a part of our own care…  She went on. Together, we can make it better. It was uttered again, slowly, deliberately. Together, we can make it better…. and that is how you all treated me, you let me decide.

 

Do you ever have one of those profound moments when you recognize what is happening is bigger than your ability to absorb it, or even react to it? That’s where I was; almost out of body. What a profound thing this visitor just shared.

I asked my guest, and by now I think it is safe to say, friend, if I could borrow her line.

The next week, during our staff meeting I shared the story. I told them about this patient’s experience. And, I shared our new mantra: Together, we can make it better.

Since then, we have ordered t-shirts and buttons with our new raison d’être. We start and close all of our team communications with our co-opted phrase. It reflects how we should treat each other as team members, it tells us how to involve our patients in their care and most importantly it reminds us every patient is on a journey. In listening to their story and seeking to understand them, together, we can make it better. 

 

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