Exploring barriers to nutritional support for oncology patients with Dr Mary Kennedy - Part 2

one of the other big components that came through in your paper was the need for more co-design.

And so I'm wondering if the co-design element here is going to be potentially one of the key elements in trying to plug all of those holes simultaneously.

Can you talk a little bit more about the importance of co-design and potentially is this something that's been lacking in the past?

Yes.

And look, I think co-design is such a buzzword right now in the research space broadly.

And when we talk about it in implementation work, I think what's really critical and a step that people often kind of skip is it's very obvious that we need clinicians and we need patients to be part of those conversations.

But something that we alluded to earlier, what we always demand in our co-design is that we have the administrative representation of um as part of our groups when i did a scoping review similarly in the exercise space and i actually coded all of the participants that came we had 50 papers in that review so it was much larger and we looked at all of the participants and Almost all participants were clinicians or patients.

I think there were three organizational representatives.

Yet, the biggest barriers came in the organizational space.

So there are issues around clinicians don't have the time, there aren't the workflows, there aren't the resources to refer to.

And so the problems, the holes that we're trying to plug in our leaky bucket are often due to administrative issues or organizational workflow issues, yet we're not talking to those people and they're not part of our co-design process.

And so it's a call out to all of us doing this kind of work.

Yes, it's critical to have the clinicians and the patients, but we can design the best system in the world.

It's the hospital service that needs to accept it and deliver it and it needs to be feasible for them.

And if those people aren't part of your discussions, then it's really not going to have an impact.

So we need to start being more creative about the people, or more intentional is a better word, about the people that are in the room for our co-design.

The other people that is a big call out to all of us to start to include are policymakers.

We need to be changing policies that can underpin the changes we want to make.

We want to be able to hire dietitians.

We want to have access and we need to understand the needs of the policymakers and too often we do our research, we have an effectiveness lens on it and we go to them and that's not what's going to change their mind.

What we found in our co-design work is if you actually include those people in real time as they're having the conversations, it's very different than if I have a meeting after the fact to go talk to them about my research.

I'll give you one example actually from this project.

So this was the funder funded an implementation project in the Southwest.

It's delivered across three different healthcare services.

So we had the administrators and clinicians from all of those services in the room for our co-design.

I presented the data that showed that basically no patients were talked to about nutrition and exercise.

It wasn't part of their care.

Our consumer team said we all fell through the cracks.

I presented that and the nurse manager, because she's so passionate about her job and very good at it, was very defensive and said, but I talk to everybody about it, but I do that.

But it was very hard for her to hear.

And it wasn't until a consumer raised her hand and said, I'm telling you, I went through your service and no one talked to me.

And when the consumer said it, it changed the whole tone.

Then the nurse was willing to hear it.

And she's been the biggest advocate.

It's a really tricky balance of finding the data, presenting the data, having people not feel defensive that they're not doing their job the right way.

And that takes a lot of relationship building and a lot of time.

And that's something that researchers really need to understand, that these are really tricky conversations to have.

And so you need to really be developing the relationships with the right people, getting the right people in the room, and having the conversations in a really thoughtful and meaningful way.

But yeah, we need to move beyond co-design that's patients, researchers, Clinicians, we need to be intentional and we need to think more broadly about what we want to impact and who needs to be part of that impact.

Fascinating to hear you say having the administrators involved in co-design.

It's so true.

They often know more about patient flows and what's happening with patients and how they go than anybody.

We think we do, but we don't.

And you can have the best design program in the world, but if it's not going to fit the reality of how the hospital works, patient flow works it's not it's not going to work so yeah

that that's exactly right and i think we not that clinicians aren't critically important you are but you don't actually get to make some of those decisions not as

important as we think we are sometimes

right so and to have that administrator say yeah actually i'll fund that or i'll make that change for you hugely and that's how we've we've been successful in our work so yeah call to researchers to think broadly about your co-design team