Thread by @ekeeleymoore

I’m getting tired of all things published on coproduction being told only from the perspective of learned expertise and not lived expertise when the actual essence of coproduction is everybody working together on an equal basis… 1/

https://twitter.com/madgekap/status/1498694658381262855

…to create a service or come to a decision which works for them all. Is the problem in how we are defining start and end of working together? Because when my actual blood, swear, and tears (aka lived expertise) are put into coproducing better health outcomes 2/

with a care team (aka learned expertise), I don’t consider that coproduction to end when we leave the office. I live with and think about this disease all day everyday, and am constantly thinking about working with you, for my son and for other peoples sons and daughters…3/

Everything I think and all that I do contributes learning about this disease, and builds lived expertise. It informs care decisions and predicts health outcomes at least as much as bench science IF NOT MORE…4/

…yet when that knowledge is shared in medical journals and on podcasts and at international conferences, in international classrooms teaching the next generations of [learned experience] care providers…5/

one of those two parties working tirelessly to coproduce the service of better health is not just underrepresented but flat out imaginary in existing resources on the topic. Shame on you academia. I’m fucking tired of it.

There’s more

While I learned much from and with Paul Batalden, in fact having him open my mind to the topic when I had been having similar ruminations shortly after the birth and subsequent diagnosis of my son with #cysticfibrosis and the complexities of this new healthcare world 6/

that we had been thrown into, in equal parts both inside our hospital and inside our home, but with support from the learned expertise only helping us with the very technical aspects of this disease when, the other 99% of our time, health and care happen in our home. 7/

We learned how to live with this disease from other parents and other people living with this disease every single moment of their lives. It took no time to build trust - whether it was comfort or solutions, when help was needed it was provided. 8/

Consider the lifesaving value of that knowledge. Now consider how we have to go about finding it, every single time we need it. There are no best practices - it’s throw out the bat signal when a need arises and hope you serendipitously intersect with helpful lived expertise,… 9/

also awake in the middle of the night with a very sick baby, sick with a disease you’re still learning. And the kicker here is that there is already a largely respected, widely disseminated format and mechanism for sharing such rich knowledge in this industry…10/

in an effort to spread and scale and impact the most lives in the best ways but patients aren’t invited to share this knowledge and maybe don’t even know these exist DESPITE the fact that they’re often the subject matter being discussed. /