Advocacy, Collaboration, and Co-Production

In 2012 Dr. Bass, a pediatric gastrointestinal physician and one of my heroes - as she takes beautiful care of my Prince and in turn my heart - asked me to join her on a path of improvement for kids with IBD.

See...don't we look uber professional?

In the beginning, as a very attentive and thorough improver, I made it a point to be "on" at every encounter inside and out of the clinic.  If it pertained to patients and/or families and their IBD care...you better bet I would notice.  

One day, in the waiting room I watched as a mom, dad, and little patient came through the doors and collapsed into chairs.  The little patient looked stable, so I wasn't feeling any urgency.  But something about the dad in particular struck me.  He was tired.  He was possibly crabby.  He was clearly overwhelmed.  Who knows why.  Maybe the parking lot was chaos.  Maybe the drive to clinic had been too long.  Maybe he was scared for his child.  Maybe his work day was rough.  Again, I don't know the story.  What I do know is he sat in a chair and looked around the waiting room of a clinic in a children's hospital and loudly said, "why are there no good magazines!  Do they think these kids drive themselves to the hospital?  I want something to read."  Now, it would have been easy to dismiss this dad.  His actions, tone and comments bordered on rude.  But his awareness and statement were actually really insightful.  He was trapped in this room.  His child had cartoons, colorful walls, crayons and picture books.  For one minute - possibly the only minute that day - he could have escaped into a magazine of his own.

I had found my passion.  

The Team...QI Rockstars

I could speak on his behalf.  I would make changes.  I would use my voice.  I would tell my version of this man's story. I would improve care for families of children diagnosed with IBD.  I was so excited!

As part of my new role, I attended quality improvement meetings with Dr. Bass, nurse practitioners, nurse coordinators, research managers, and an IBD psychologist.  A very impressive group.

It would be at the next QI meeting where I would speak up.  Tell the story.  Encourage and hopefully inspire change.  

And then the day arrived.  

I was new to the team.  I was still nervous. I wanted to be seen as professional and knowledgable.  I wanted the team to believe they chose well. 

So I told the story of a tired dad.  I laid the foundation.  I gave plenty of details.  I painted a picture to help my cause.  

And to seal the deal...

I asked that the IBD program strongly consider supplying the clinic waiting rooms with adult magazines.  

I literally said, "adult magazines."  And the team went radio silent and stared at me.  

Yes.  Adult magazines = porn.  

I can see that now.  

In hindsight, I should have said: Time, Good Housekeeping, and Sports Illustrated.

Details.  Geez. 

In all seriousness...

I am existing in this sweet spot of what I believe will be the end of one kind of health care experience and the beginning of another.  Not just for me.  And not just for one place.  I am talking about a sweeping change in health care to partner with families.

The trending vocabulary includes: collaboration and co-production.  I am certainly still wrapping my head around the definition as it is defined by the thought leaders in this movement.

But I am on the ground.  Right now.  Today.  Doing the actual work.

I am a warrior mom.  I am a persistent advocate.  I am bold enough to ask questions.  I am thoughtful enough to understand my role.  I am old enough to push for new definitions.  I am young enough to stay the course.

I am certain that the best sort of health care is the sort that comes from all the experts working together.  In my definition, the patient and family members are on the expert list.

Recently I had the opportunity to be included on an audio program.

WIHI: The New World of Co-producing Health and Health Care

While this was one of the most exciting public speaking opportunities I have had, it was the same story I have been telling - over and over - as often as I can since 2012, when my journey as a parent partner to a medical quality improvement team began.

What strikes me about the title for the audio program is the part that says: "The New World"

It could also say, "Unheard of" or "People just don't do this" or "Fantasy to reality" because this is how it's presented.

It's so foreign to so many people.

Yet, for me and the team I work with...it's sincerely a natural experience.

We are a team.

We have created community.

We communicate.  Sometimes we communicate poorly and sometimes we nail it.  But we keep doing it.

Here's the transcript from my talk.  Included in parentheses are additional thoughts I had to eliminate from the actual talk for the sake of time.  Yet, these were included in my first draft.

I am very honored to be here today. 

It’s incredibly exciting to hear any conversation around the topic of doctor and patient collaboration and co-production. 

So - As a mom, when I heard the words life-long disease for my child…the world definitely tilted (As you know, my son was diagnosed with Crohn’s Disease at a young age.  He was 4).  I dove in as: lay-researcher, advocate, and guardian of my family’s health care experiences.  I wanted best care at each visit from each provider.

 I found myself asking: “what is best care?”  “Who gives best care?”  “How do I find best care? (I was suddenly thrust into many roles that I wasn’t at all skilled for and, quite frankly, would have preferred to avoid.  But once the words, “chronic”, “life-long”, and “no cure” are spoken…the wheels are in motion.).

In many ways, Care for IBD felt like it was highly dependent on where we went, where we lived or could travel to, who we talked to, what magic formula of words we said, and other confusing factors.

Early in our journey, we did find a doctor whom I would argue is as good as they get for IBD care.   When Dr. Bass asked if I would be interested in joining a Quality Improvement Team to focus on improving care for IBD Kids…it was a significant shift in focus for me…so often I felt helpless, but now I was given the opportunity to act rather than to be acted upon.  And that felt huge.

We get to speak together about our Partnership and it's such a sweet perk!

I do think it’s true that parents of children diagnosed with a chronic disease assume they have substantial input already.  And I think it’s true.  I think that’s a great example of collaboration between one family and one provider…But I believe it’s different than what we are speaking about today.  In this case, Dr. Bass and the QI team invited me to became intentional about improvements that could impact most families at most visits across most providers in our program.  

(It was in the following weeks, as I stepped into the role of partnership with this QI team, that I learned several things.

First, They treated me like an expert.  Immediately.  And that was highly motivating to become as professional as I could possibly be.  I think it’s important to realize the unsung heroes in this process.  The research coordinators on the QI team began to include me in email conversations right away.  The administration and upper management for the clinics and hospital were not obstacles to be overcome, but supporters of our shared goals.  That is not to say that everyone agreed or that perspectives matched.  But disagreement didn’t mean the idea of partnership was wrong.  Disagreement meant more discussion was needed.  

Another important realization is Dr. Bass and the QI team didn’t pretend to already know my perspective.  In spite of the 600 families they care for, they openly admitted they needed added parent perspective.

And my favorite part of this entire experience is that...)

This team turned theory (maybe this is a good idea?) into action (It is a good idea…let’s do it!).  Very quickly.  I want to share one particular example today.

Meeting of clinical team and Parent Council.

A Little more than a year ago, I asked if we could expand our partnership beyond one parent with one perspective to a group of parents.  As is typical for our QI team, everyone discussed the possibility and decided to test the idea.  We found fast and enthusiastic interest and formed a parent advisory council really fairly quickly.  During one of our parent only brainstorming meetings, another parent on the council expressed the need for more formalized discharge planning following clinic visits.  As a parent council we discussed what is important to parents and families as they leave clinic visits.   I then took the idea and even an example form to the QI team.  The idea and template went through several iterations and a few back and forth looks by both the medical team and the parent council.  Eventually the result is a form available to all providers for discharge planning and in turn improving care for all families seen at CMH.  As a parent I am very proud to be a part of creating a tool for families- I truly believed would change their care.  And then Dr. Bass said, sort of in passing, this form has changed the way I practice medicine in my clinics for the better.  That comment was a game changer for me in the realization of what this partnership was all about.