For episode ten of our podcast, we were joined by Kathleen (Kathy) Carberry, Assistant Professor at the Dell Medical School and Outcomes Program Officer at the Value Institute for Health and Care. She has been a registered nurse for 20 years and was the founder and director of the Texas Children’s Hospital Outcomes & Impact Service that was dedicated to helping patients, families, and clinicians make better healthcare decisions using outcomes information. Carberry is a recipient of the Healthcare Informatics Innovator Award and the Good Samaritan Foundation Excellence in Nursing Award.

Our hosts for this episode, Steven Cutbirth (who is also Kathy’s former student!) and Stephanie Pawlowski, discuss why measuring healthcare outcomes is so hard, the importance of value-based care, and why she is committed to improving the support system for caregivers.

You can listen to the whole episode here or on Spotify, Apple Podcasts, or wherever else you listen to podcasts. If you’re short on time, we’ve included a few highlights from our conversation below:‍

Stephanie: “Do you think value-based care is the best way to ensure good clinical outcomes across healthcare? Why?”‍

Kathy: “I don't know if there's a best way because I think there's lots of partnerships that have to happen and alignments that have to happen in the space for it to work. But having said that, you know, value-based care fundamentally is about improving patient outcomes. It is about the outcomes that matter to them, getting people back to doing what they want to be doing as quickly as possible. I'll give you an example and I think it speaks to what we’ve kind of been talking about value-based care being applied everywhere in healthcare. So I have a family member who's having terrible sciatic nerve pain right now, just terrible. Elderly senior who is very spunky, but recently had to go to the emergency room because he couldn't get in [to a doctor’s office] to get anything. His pain is still not under control. He doesn't know where to go. And I think to myself, ‘Sciatica is not a new problem.’ I mean, think about how many people have sciatic nerve pain, how many people actually know how to improve it, improve care, and help people. And that's the kind of thing where I thought to myself, ‘Why couldn't someone say, I've treated this many patients with this treatment and these are my results for success.’ Honestly, that's all we're asking for with value-based care. I'm simplifying it, but you know, improving outcomes is teams knowing ‘I helped someone.’ Or, ‘Did I not help someone? If we're not helping anyone, what are we doing and how do we change that?’ It's a realignment of incentives and focus on what the healthcare system should be about.”‍

Steven: “We hear you may be working on a book focused on outcomes measurement? Is that true? Could you give our listeners a taste of what will be covered in the book and why you are writing it?”‍

Kathy: “I just wanted to create a simple handbook, a guide to help. First, it was really for clinicians to help them measure their outcomes. And it came up because when we had established our service at Texas Children's for outcomes and impact, and measuring that. I had so many teams come to me and clinicians say, ‘Well, how do I do this? How do I measure outcomes?’ I had administrators eventually asking too, like ‘We are committed to measuring outcomes. How do we do that?’ And so I was inspired by a book that my colleague gave to me on how to write. It was literally called ‘How to Write.’ And I picked it up and I thought it was such a brilliant idea to have just a little bitty handbook that you could reference on how to do something.There was not a manual type of book that someone could just have on their shelf and reference and say, ‘Okay, I want to measure this. How do I even start?’ And it's very hard. It's an overwhelming process. And there's lots of excuses people could come up: I don't want to do it, I can't do it, I don't have time. And so I wanted to make it simpler for people. So that's the hope for this book, is that it’s just a handy manual to help people understand and apply outcomes measurement.”‍

Stephanie: “We saw you recently received a grant from the Episcopal Health Foundation to improve health outcomes of children with medical complexity by improving parent caregiver well-being. Congratulations on that! Can you tell us more about the work you will be doing?”‍

Kathy: “I'm so excited about it, Stephanie, and I'm so honored to be part of it. So I have the chance to work with a brilliant pediatrician who runs the comprehensive care clinic at Dell Children's. Her whole team there is phenomenal. We are partnered with two incredible parents of children who are seen there, and we are co-leading this together. And I want to stress that because they aren't providing advice per se, in many ways that patient advisory groups are used today, they have real input into the design of what we're going to do. What we're planning to do is really reimagine how the, what is usually called the well-child check for children with medical complexity is done. And the first thing we did, and this was based on a parent suggestion, was change the name of that, well-child check to whole-child visit. Let me give you a little context about children with complex medical needs. So they represent really only like less than 1% of the pediatric population, but they incur probably over a third of the cost. And that's because of all of the services that they need, the equipment, technology, and things like that. They require a lot of sub-specialty care oftentimes, and there's lots of different segments within that group. So I'm generalizing a bit, but just to give you a sense that one patient might have a neurologist, a neurosurgeon, or an orthopedic surgeon, as well as the primary care doctor. And if you can imagine that patient and parent has to load up into their van or other automobile, and or bus, and try to get to every single visit to try to coordinate care for their child and each visit they're explaining over and over what's going on, right. They are the only bearer of all that communication. What we intend to do is bring all of those people together in one virtual visit and come together around: what are the goals for that child? What does the parent want to achieve in terms of health goals for that child? And how we're going to address the wellbeing of the parent is by addressing their isolation in feeling like they're the only ones fighting for the health of their child. I'm not trying to use generalities, it’s just that this is some of the feedback that we've gotten from our families. In particular, that they feel isolated from the healthcare system. You know, once they're discharged from the hospital, it's like, you're on your own. Call so-and-so and call this so-and-so. And so what we're trying to do is support them and their wellbeing. And then finally, really create a partnership and a connection between the clinical care provider team, as well as the parent and the child. It's even deeper than empathy, it is really about recognizing that this person has values and intent and has a worthwhile perspective that needs to be incorporated into the care planning.”

To hear the whole conversation, click here for the full podcast episode. You can also hear more from Kathy by connecting with her on LinkedIn and visiting the Value Institute for Health & Care website.