Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and host of this podcast series, Health Literacy Out Loud. In these podcasts you get to listen in on my conversations with some truly remarkable people. You will hear what health literacy is, why it matters and ways we all can help improve health understanding.

Today I’m talking with Marlene Fondrick who helps patients share their stories as a way to advance the practice of patient and family-centered care. This work builds on Marlene’s clinical and administrative experiences as a nurse and hospital vice president. Marlene also brings into this mix her personal perspective as a grandmother of a young child who was diagnosed with cancer.

Welcome, Marlene.

Marlene: Thank you, Helen. Good morning.

Helen: You and I both know and value the power of stories. I tend to ask professionals to share their experiences, just as I’m doing on the podcast with you right now. You invite patients to tell their stories about treatment and care. I’m intrigued. Why do you value stories so much?

Marlene: I learned a long time ago in my management roles that the power of having patients tell their own stories got a lot more done than in me trying to tell their stories. The patient’s family sharing their stories directly brings out a passion that staff and other administrators just can’t ignore. They feel and listen to what we do that works and what we do that doesn’t work so well in our organization.

Helen: I hear about two sides of this. I hear about the passion in the patient’s stories. I also hear who they were telling them to, the staff and administration. I’m curious about both ends. Let’s start with the patient part. Who do you get to tell their stories, and what exactly are they talking about?

Marlene: First of all, they’re talking about their own healthcare experiences. They’re not sharing stories they’ve heard from someone else. Usually when they’re telling those stories, they’re told with so much more passion and interest because they’re firsthand stories.

Who I get to tell those stories is all dependent on the kind of stories that we want to be told. In other words, if you’re looking for stories that will change process in a particular kind of unit, then you look for patients and their families that have experienced that kind of unit. It’s really looking back to what their experience is and what kind of stories they have to tell you.

Helen: Do people want to share these stories?

Marlene: Yes. The thing I’ve heard so often is, “I can’t believe someone is actually listening to me and making changes based on what I’ve told them.” This is the patient speaking, not me personally.

They just feel that so often they come in and use our services in a healthcare organization, and people do it to them or for them rather than with them. It’s like people don’t really want to hear the impact of that.

When we find ways to listen to those stories, the patients are so appreciative of being part of any changes that might be made based on the stories they tell.

Helen: These stories aren’t just a complaint session, are they?

Marlene: Heavens no. There are two very simple questions I will ask the patients or their family to share stories about. One of them is to tell a story about something that went well in their healthcare experience. What did the staff, physicians or whoever they interacted with do that made it a good experience where they left feeling like they were respected and really listened to?

On the other side of that, I ask them to share a story or two or three where things didn’t go so well. The real learning point is that in addition to sharing what didn’t go so well, if we could go back and do it over again how would they like to have it done?

Helen: You’re putting both spins together on that.

Marlene: Exactly.

Helen: I’m curious to hear a story. Before we get there, I want to hear about your audience. You bring a range of perspectives. I know your work is in patient and family-centered care. You’re experienced in many levels of healthcare, including a very senior level. Representing the listener audience, how do these stories matter?

Marlene: What I hear them say is that for many staff and people who work in healthcare organizations, they don’t have an opportunity to hear directly from patients and families about the impact of the care that is provided.

They will often get feedback from patient-satisfaction surveys or letters that patients write. If something negative happens they feel like they always hear that, but they don’t get the things they’ve done well.

We try to get patients and families to share stories. It’s fun in a variety of ways. As an administrator, I use patients and families to tell stories about what type of equipment or changes would make an impact when we’re developing an annual budget.

Helen: I didn’t expect that you were going to talk about budgets. I expected patient-care issues. Do stories matter in budgets?

Marlene: Certainly. It’s about patient care issues, but it’s also about when we’re thinking about spending money in the organization, what types of equipment, programs or anything might improve patient care? Yes, your story impacts the budget. We might as well put the dollars that we have some control over in the places that really make a difference to patients and their families.

Helen: Now I see the connection there. Tell us a story about how you put the patients and their stories together with administrators. I’d love to get an example of this.

Marlene: This isn’t specifically a budget thing, but I remember when we were redoing some floors in the children’s hospital where I worked. We had brought some patients and families in to look at the floor plans.

I can tell everyone now that you don’t wait until you have the plans all done. You bring them in before you even start. We were learning at the time and we were feeling really good about getting them involved at that level at least.

They looked at the plans and said, “What is that room for?” We said, “That’s the parent lounge that is already there.” The parents said, “We never use that.” We got to talking about it. They said, “We would like to have a room that’s got a washer, dryer, telephone, computer, coffee pot and microwave.” They were going through this whole list of things.

Of course the staff’s immediate reaction was to say, “That’s not in the budget.” The development person was sitting there, and she said, “No, this really matters to patients and families. Let’s figure out how to find the money,” and they did.

Helen: Wow. Did you as an administrator ever think that a family member would be interested in having a washer and dryer right there?

Marlene: I suppose in the background I did because we had many families with children who were hospitalized for long periods of time who talked about how difficult it was not to be able to get clean clothes or things like that. I can’t say that we really considered it and said, “Maybe we ought to get a washer and dryer.” It was the stories told by the parents that really encouraged us to do that.

Helen: Thank you for sharing that. As you’re telling that story, I’m thinking about what I do when I work with groups to write written materials. I always talk about the fact that it takes a team to write material that people can really understand and use. That includes bringing in our reader as early in the process as possible. It sounds like that’s the equivalent of what you are doing as you’re even designing your building.

Marlene: Exactly. Looking at any program, even down to reviewing or developing educational brochures, developing a new service, revising an old service or just wanting to improve a program, don’t wait until all the ducks are in a row. Get them involved right at the beginning of the process. Get two, three or four patients or family members involved, not just one.

Helen: That brings me to what I was getting curious about. You say that people like telling their stories. I’m assuming some patients are better storytellers than others. It’s the way we all are. Some people are better storytellers than others.

How do you choose the patients and help them get ready to be at a budget meeting or help in a facilities planning or whatever else you do? What is that behind-the-scenes process that you do?

Marlene: First of all, I’m no longer in an administrative role. I do a lot of work with an organization called The Institute for Patient- and Family-Centered Care. Now I’m working a lot through recommendations of staff.

In order to find patients and families for these various types of storytelling things, such as a panel of three, four or five patients or family members, I’ll ask the staff to identify some patients or families who are able to articulate their stories in a way that people can learn from.

I’ll spend some time with them just having them tell me their experiences and stories. There are different ways to tell those stories so that they can be a learning experience. I prepare them by helping them understand who the audience is and what kinds of stories we want them to tell or about what kinds of experiences. That’s basically where I get the people.

Helen: You choose people with a story to tell that’s consistent with the point you’re trying to make.

Marlene: Exactly.

Helen: You talk with them about the power of stories and how to tell them during the session. That’s kind of the “what you do before” part. What do you do while they’re telling the stories?

Marlene: Mostly I’m listening. I’m like a facilitator of the story. I will tell them that I’m going to be asking them questions. I will tell them ahead of time what the questions are.

I encourage them to bring notes if they want to. Sometimes you get up in front of a group and your mind goes blank, so I just ask them to jot down some notes. Frequently they’ll bring pages and pages of notes they have worked on to get their stories down. Others will come and speak very impromptu.

As you said, there are different levels of skills in telling stories, so I do anything I can to make that easier. Sometimes they’re telling stories before a small group of staff, maybe 10 or 15. Sometimes the group is as large as 500 or 600 people.

They need to know what the room is going to be like, where they are going to be sitting, or if they are going to be on a stage so that when they come in they feel comfortable with the environment. That will help them in telling stories.

Helen: Please do share a story about how this really made a change in an organization.

Marlene: I was working with newborn intensive care unit. In that unit, the parent satisfaction scores with the care and service were the lowest in the hospital, which is kind of unusual for that kind of unit. The relationships between the nurses and the parents were very poor. Many times the nurses were taking over the parenting role and not getting parents involved.

We had a panel of five parents, four moms and a dad, who came in. They came in at 7: 00 in the morning to meet with the staff. We videotaped it.

The staff was very hesitant because they were feeling kind of beat up. They were getting a lot of messages from administrators that said, “You’ve got to turn these satisfaction scores around. You’ve got to fix things.” I don’t think the staff knew how to fix things.

On this particular panel, the parents talked about what worked, what didn’t work and what they would like to see improved. There was a huge impact on the staff. First of all, they heard some of the good things they were doing so it wasn’t all negative. Then there some stuff about what would make a difference and improvement.

What was interesting is that the nurses went back to the unit and told the other nurses, “You have to watch this video. It’s really good.”

Helen: Was it the video of these stories?

Marlene: Yes, it was the video of the panel. That was the beginning of the staff working with the parents to develop some programs that were models of collaborating and working together. It changed staff attitudes toward parents. It changed parent’s attitudes toward staff. There were a number of things that were developed as a result of that.

One example is that they really improved the parent lounge and put in things that really made a difference to parents. For instance, there were vending machines so they could get some food and drinks where there had been nothing available before.

Within about six months, the satisfaction scores started to turn around. Within 18 months, they were the top scores in that hospital.

Helen: What a beautiful story.

Marlene: They really felt that a lot of it had to do with the initial stories of those five parents changing attitudes.

Helen: I’m closing the loop. Did those five parents ever find out what a difference their stories made?

Marlene: I don’t know how much they found out. I know they did find out some things. Their babies were no longer in the unit, so they didn’t have an ongoing experience like you might have with an advisory council that’s ongoing.

Since I wasn’t working with that organization anymore, I was there in a consultant role. I wasn’t there as an administrator. I’m not exactly sure, but knowing the nursing director that was in charge of that unit, I can’t believe that it didn’t go by without some recognition of how that all started.

Helen: What a beautiful circle of change and improvement. For our listeners who might be inspired to try this, or to keep going if they’re already doing this, what recommendations would you have?

Marlene: I think the best thing to do is improve listening skills. That’s probably one of the things that is most key in the work that I do. I need to be able to listen and key in on the key topics that they’re bringing up. I think there are specific ways or classes that people can take to do that.

I also think it helps to work with someone that has facilitation skills. In other words, if someone is a manager of a unit, a vice president, director or whatever, bring someone in to facilitate a panel of patients and their families, and learn to listen to their stories.

One of the things I think is absolutely key when this is happening is that someone needs to facilitate to make sure that things stay on track.

Let’s imagine that someone in that group of patients or family members is really angry about something. When that anger starts to come out, it really needs to be held in check. During a panel is not the place to take care of the things that patients and families are most angry about.

That’s what I mean by listening. I will listen for cues like that, and I will say, “I can tell that you’re really upset about this. This isn’t the place that we can deal with that, but after this panel I’m going to get you connected with a manager, social worker or someone that can actually deal with the issue.”

Helen: Will you do that during an actual presentation or panel?

Marlene: Definitely. You cannot let someone who is really angry begin ranting and carrying on. Nothing will destroy staff listening more than a patient or family member that gets carried away in being really angry.

Honestly Helen, that’s only happened one time like that where I had to intervene, and I’ve been doing this for years. It is still something that you need to be sensitive to, and it’s one of the things to think about when you’re choosing patients to be on a panel or to speak before a group of staff or administrators.

Helen: It sounds like it takes a certain kind of patient. It could be most patients, but you have to be prepared. It sounds like you almost need the same set of skills for the facilitator as well. Many people can do it but perhaps not everyone. They may have a different agenda some way or another.

Marlene: That is so true.

Helen: How can people learn more about this?

Marlene: One of the things is that I would encourage them to check the institute’s website.

Helen: The Institute for Patient- and Family-Centered Care?

Marlene: Yes. It’s www.IPFCC.org. There are a lot of tools there for storytelling, panels and advisory councils, and for picking the right people to be on these councils. There is a lot of stuff on that website.

Helen: Thank you. We will have a link on the Health Literacy Out Loud website as well.

One last question for you is when you’re sitting in an audience five years from now, what story would you like to hear about patients telling their stories?

Marlene: I would like to hear that in every single organization there is some avenue for patients to share their experiences in addition to patient-satisfaction type questionnaires where they are actually able to come in and share their stories, and people will listen to them.

A number of organizations that I work with are now starting all of their meetings with a patient story. I know one organization that has a patient come in and tell a story before every senior leadership meeting, board meeting and every team meeting of managers. The story might be just three to five minutes long, but the patients are going to share both good stories and not-so-good stories.

That’s what I mean by avenues for staff and administrators to really connect with patients and their families in a way that they’re able to share from their perspective. We want to get to the point where we’re collaborating with patients in a different way. Instead of doing to or for the patients and their families, we’re working with them in the provision of care.

Helen: Marlene, you really exemplify that. I’m just thinking about some verbs that I got from you. Aside from your passion for sharing the stories, you talked about connecting, listening and sharing. That’s what patient- and family-centered care is all about. Thank you so much for sharing this with the listeners of Health Literacy Out Loud.

Marlene: Thank you for letting me be a part of it, Helen. I really appreciate it.

Helen: I learned so much from Marlene Fondrick, and I hope that you did too.

Health literacy isn’t always easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, “What’s New in Health Literacy Consulting.”

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Did you like this podcast? Even more, did you learn something new? I hope so. If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.