Elevating the Patient Voice: Building Partnerships in Care

00:00:00:03 - 00:00:17:10
Tom Haederle
Welcome to Advancing Health. Health care is both a science and an art. In this podcast, we hear the powerful story of a hospital and a caregiver who wisely recognized that patients and families also play a role in shaping successful care.

00:00:17:13 - 00:00:42:07
Kristin Priehs
Hi everyone. I'm Kristin Priehs, vice president of American Hospital Association and Health Research and Educational Trust, and I am so excited for today's conversation. Today, we're diving into a topic that is foundational to quality in health care, but one that is also evolving quickly: the role of patients and families in shaping care. We often talk about patient engagement and many organizations that are doing incredible work across the field.

00:00:42:07 - 00:01:05:02
Kristin Priehs
But through our work for the Quest for Quality, we're seeing some opportunities to change and advance the field. My partner here today has spent a lot of time with me on the road at site visits across the country, identifying and evaluating Quest for Quality site visits. And it's become clear that there is a significant opportunity to engage patients differently in the conversation and begin partnering with them in the way that care is designed, delivered and improved.

00:01:05:02 - 00:01:33:18
Kristin Priehs
So I'm joined today by someone who brings both a depth of expertise and a powerful personal perspective to this conversation. Caroline DeLongchamps, program director of Patient and Family Centered care at the Medical University of South Carolina Health System. Caroline has spent over a decade leading patient and family care efforts at the system level, and she's also been part of our Quest for Quality work, helping evaluate what leading organizations are doing in practice.

00:01:33:19 - 00:01:45:28
Kristin Priehs
So, Caroline, we're so glad you're here. I'm personally so glad you're here. I've known you personally for quite some time, and I've heard a bit about your journey. Can you share a little bit about the passion that you have for this work and how you got started?

00:01:46:01 - 00:02:08:19
Caroline DeLongchamps
Thank you, and thanks for having me, Kristen. It's a joy to be here. So what brought me to the work is a personal story. My son was 11 months old. I have three boys. My son Sam was 11 months old when he was struck by a car in our family driveway. I was in the front yard with my three and a half year old son, waiting for my eight year old son to get off of the school bus.

00:02:08:21 - 00:02:29:27
Caroline DeLongchamps
Every afternoon was a little bit like a party. All the kids get off the school bus and the parents come and get them, and this day was no different. I went to get the mail out of the mailbox, and when I looked up, I realized that Sam had escaped from his little plastic minivan where he had been playing, and my girlfriend had gone to leave, but she pulled in the driveway to do so.

00:02:30:00 - 00:02:49:20
Caroline DeLongchamps
And so when I looked up, his head was under the front right tire of an SUV. My first instinct was to try and pull him out from under the tires. Unsuccessful. My second instinct was to try and lift the vehicle off of him, which, looking back, doesn't make any sense. But eventually, you know, she got out to see where she was and got back in the car and backed up.

00:02:49:20 - 00:03:09:26
Caroline DeLongchamps
And I only share that to say this wasn't a brief moment in time. It was several moments in time, and we drove to the nearest emergency department where they really couldn't do anything for him except administer oxygen and call for a rig that brought us downtown to the peninsula and to the Medical University of South Carolina. There he was triaged and intubated.

00:03:09:26 - 00:03:35:14
Caroline DeLongchamps
They were ready and waiting for us. He was triaged and intubated. And then I looked around that room and saw tears from several of the folks caring for him, and knew we were in big trouble. Stan presented with skull orbital facial fractures and by frontal contusions and intracranial hemorrhage. He was transferred upstairs to the pediatric ICU. We were separated, and that separation allowed enough time for kind of like, the PTSD to sink in.

00:03:35:14 - 00:03:53:14
Caroline DeLongchamps
And so I could see and hear that you were talking if you were standing in front of me. But I couldn't actually make out the words. And I was scared because I know I was about to get really important information about his life that I quite literally would not be able to understand. And that is exactly what happened. Came out of the back door and she brought my husband and I in, and she left me sitting three feet at the foot of bed ten.

00:03:53:15 - 00:04:11:03
Caroline DeLongchamps
And I did not like his what I saw lying in bed ten. It didn't resemble Sam, but the bedside nurse picked up on what was going on, and she came three feet to the foot of the bed, and she took my hand, and she tucked it up underneath her arm and gave me a fist pump. No words, just a fist bump.

00:04:11:03 - 00:04:32:19
Caroline DeLongchamps
But to me, it felt like that fist pump was saying, I got you. If you even think about going down, I got you. And then she walked to the head of the bed and she said, I need you to talk to him right now. He needs to hear your voice, not mine. I'm only a stranger. And I think that triggered something in my brain that let me know I had a job to do.

00:04:32:20 - 00:04:49:07
Caroline DeLongchamps
And then she said, this blue tube is a ventilator, and it's allowing his major organs to rest while we do the hard work for him. And this little tube coming out of the top of his head is called a ventricular, and we're pulling the blood off of his brain as fast as we can to help alleviate what will certainly be significant brain damage.

00:04:49:09 - 00:05:12:14
Caroline DeLongchamps
And all the while, this nurse, Lisa, was taking care of a critically ill, dying patient while literally and figuratively holding me up with the other one. And I just share that brief story to say that Lisa was the most powerful human being I'd ever met up to that point in my life. This act of taking my hand and tucking it up underneath her arm changed the way my husband and I viewed our role at the bedside

00:05:12:18 - 00:05:33:08
Caroline DeLongchamps
throughout the duration of his care. I knew I had a job to do. This pump engaged my brain in a different way that engaging us and including us in what was going on with him, I really believed, wasn't just a nice thing to do. It really helped change the outcome. I like to think that we had a part of what was ended up being a successful outcome.

00:05:33:08 - 00:05:43:28
Caroline DeLongchamps
He was expected to herniate. We were told he probably would not survive, but he did survive. And I like to think that it was because of the partnership that was created in the moment that he was admitted.

00:05:44:01 - 00:06:12:24
Kristin Priehs
First, thank you for sharing that story. Hearing you go through it is incredibly powerful and personal and that it's led you to the champion that you are for so many others. It's just an incredible asset. So I just wanted to say thank you first and foremost again. I know, after being out in the field with you for now, several years, I've seen some of that passion come through as we're talking to hospitals of all different sizes and types across the country for the AHA Quest for Quality Award.

00:06:12:24 - 00:06:29:24
Kristin Priehs
And I want to pull up one of the last points that you made about it felt like a true partnership, because I think having the patient engaged with hospitals and health care systems at all different disciplines as a partner is incredibly powerful from the example that you shared. So can you talk a little bit now that you're in this field as what that looks like?

00:06:29:26 - 00:06:56:09
Caroline DeLongchamps
I love these site visits. It's been such a gift for me to be a part of this prize committee. The site visits continually remind me that excellence is it doesn't show up in a in a single program or a metric or a presentation. It's revealed in the consistency that we see between what an organization says it values and what we see and what folks actually experience.

00:06:56:09 - 00:07:22:19
Caroline DeLongchamps
And I mean both their employees and their patients and families experience. And so from a patient and family centered care perspective, the question isn't whether or not patients and families are present, or even patients and family advisors are present, but whether they're partners, and that distinction is what I think separates the good organizations from the truly exceptional organizations, because we're getting more mature about this.

00:07:22:20 - 00:07:47:08
Caroline DeLongchamps
A lot of people can say, we have a PFAC, but what are you doing with your Patient and Family Advisory Council? So what's really fun about that is while the committee evaluates strategy and operations and outcomes and process improvement, I feel like my role is to assess whether that the quality is being achieved with patients and families, rather than just for patients and families.

00:07:47:12 - 00:08:15:03
Kristin Priehs
That's perfect. And having seen so many hospitals that are on their own Quest for Quality really listen to you and your own perspective on these site visits, I think has been groundbreaking. You have been such an advocate for how this field is evolving and going beyond patient and family engagement, and PFAC specifically into a much deeper partnership. I'd love to hear from you, because we talk so much about quality roles all the way from the board to the bedside, where you're seeing leadership engagement, specifically in patient engagement.

00:08:15:03 - 00:08:24:15
Kristin Priehs
And how do hospitals do that sustainably as they have new leaders that come on board or as leaders are really developing what their patient engagement strategy looks like and patient partnership.

00:08:24:18 - 00:08:45:03
Caroline DeLongchamps
You can put anything on paper, but it's different when you see it in action. And what I look and listen for is are they talking about it? Are they talking about patient and family centered care? And again, not just patient engagement. The terminology "patient engagement" is funny to me because it sounds to me like it means the patient is supposed to do something.

00:08:45:04 - 00:09:14:21
Caroline DeLongchamps
The patient is supposed to engage in their care? And it's not the patient's responsibility. It's our responsibility as a provider, as a health care system, to lean in, not to sit on the trash can in the room and say, what's your favorite color? What did you do this summer? But to meaningfully and intentionally lean in and ask questions. I'm constantly distinguishing in my organization at least, the difference between patient and family centered care and patient and family advisory councils, and those get used interchangeably a lot.

00:09:14:22 - 00:09:36:15
Caroline DeLongchamps
Patient and family center care is the culture of creating these mutually beneficial partnerships, not just what's good for patients and families. It has to work for providers and others as well. So we can we can partner in the in the delivery of care. So how do we do bedside shift report and physician rounds and how are our leaders holding us accountable for those things that make us a patient and family centered care organization?

00:09:36:15 - 00:10:02:13
Caroline DeLongchamps
And then how do we partner with patients and families in the planning and evaluation of care? And that's where your patient and family advisory councils come in. And again, anybody can have a patient and family advisory council. But how are you utilizing your PFAC, or Patient and Family Advisory Council? And it can be a grassroots effort. It was a grassroots effort in our organization for quite some time, but at some point it has to be it has to come from leadership.

00:10:02:13 - 00:10:20:25
Caroline DeLongchamps
They have to talk about it. They have to utilize it. They have to cascade it to their leaders and make sure that folks are utilizing that. Because to create effective councils, it can't just be bringing the patient perspective in. And that's where I think my voice is helpful or my ear is helpful on some of these site visits

00:10:20:25 - 00:10:47:20
Caroline DeLongchamps
is that - sure you have a council. How are you orienting them to the organization? So they're bringing their patient perspective, but it's really your job as an organization to add layers to that perspective, to help teach them who you are as a health care system so that they can become effective advisors. So you're really adding on to that perspective so that they can inform you about what's next.

00:10:47:26 - 00:11:07:02
Kristin Priehs
I love that, and as we think about leadership specifically, there's a lot that leaders are handling right now. And at the core of it should and always is patient care. And I know one of the things that is a very deep conversation and an evolving one is around the role of technology in patient care. Patients have more information at their fingertips than they ever have.

00:11:07:08 - 00:11:29:15
Kristin Priehs
We're now seeing how predictive analytics and AI and EHR coordination, virtual care is all evolving quickly. So can you tell us from the patient centered care perspective, with the patient being a true partner with hospitals and health care systems, how is technology evolving to ensure that they are true partners at the table and decisions that affect their care?

00:11:29:18 - 00:11:52:24
Caroline DeLongchamps
It takes me back to an example that came out of Covid, which I'm not equating Covid to AI, but what happened during Covid is we had a leader in our organization say, wow, things are changing rapidly right now and we are going to make mistakes. I am certain of that. But in order to course correct very quickly, the monthly PFAC meetings are not enough.

00:11:52:24 - 00:12:14:20
Caroline DeLongchamps
I want to make sure I'm engaging with patients and families on a regular basis. So he set up weekly calls with our members of our Patient and Family Advisory Council just to make sure he knew what was happening on the front line. And he heard from a parent who said, I brought my child in for a Covid test in preparation for a heart cath, and we were separated.

00:12:14:22 - 00:12:35:03
Caroline DeLongchamps
And I understand the reason for the separation. I have heard that in PFAC meetings,  you guys have educated me about - we're trying to reduce the risk of transmission of this very scary virus. But I live with my daughter, and if I'm willing to assume that risk, I can help reduce the risk to one of your very precious, precious nurses who we really need to come back to work tomorrow.

00:12:35:06 - 00:13:07:19
Caroline DeLongchamps
That was a really important example because we changed a policy immediately following that. So I think when it comes to AI, it's important to remember that patients and families are not the end users of AI. They are the stakeholders. So if you're establishing AI committees or you're working on things about what this is going to look like for your organization, embed your patient and family advisors on those teams at the beginning before the decisions are being made, so that they're a part of that, so that they're partnering with you and that you're building trust.

00:13:07:19 - 00:13:22:02
Caroline DeLongchamps
And that's what AI is supposed to do. It's supposed to reduce burden. If AI is creating time for providers so that they can have face to face conversations, build trust and create connections, then we're on the right track. But if it's not doing that, then we're missing the mark.

00:13:22:06 - 00:13:41:15
Kristin Priehs
Well, we're certainly not missing the mark when it comes to you being on the Quest for Quality committee. So thank you for that. This is, as always, been one of the most energizing and thoughtful conversations that I've had. I thank you again for sharing your history and your story and where you see patient engagement and partnership going, because I think the field will always have a lot to learn from you.

00:13:41:20 - 00:14:05:04
Kristin Priehs
One of my biggest takeaways is that the work is not about checking boxes. It's so much more about having the right structures in place, the right leadership, and really ensuring we're creating cultures where patients, families and caregivers are truly partners in designing care. And health care continues to evolve, especially with new technology and innovation. The opportunity is really in being intentional about bringing those voices into the process from the start.

00:14:05:04 - 00:14:23:20
Kristin Priehs
And for those listening, I really encourage you all to really think about how patients are being engaged in your own organization and move beyond engagement to true partnerships in meaningful way that continue to improve care. So, Caroline, thank you so much for your leadership and for sharing your perspective with us today. And thank you to all of you for listening.

00:14:23:20 - 00:14:25:24
Kristin Priehs
We will see you next time.

00:14:25:26 - 00:14:34:19
Tom Haederle
Thanks for listening to Advancing Health. Please subscribe and rate us five stars on Apple Podcasts, Spotify or wherever you get your podcasts.