In this episode, we discuss how patient and family voices help shape better care at Stony Brook Medicine. Listeners will hear from a Patient and Family Advisory Council (PFAC) advisor at Stony Brook University Hospital, highlighting the essential role PFACs play in connecting patients, families and healthcare teams.
The conversation explores how patient feedback is transformed into meaningful improvements that enhance the overall care experience. Experts also share practical guidance on preparing for a hospital admission and point to a wide range of resources available to patients and families before, during and after care.
The Experts
Nicole Rossol, MS, CCLS
- Chief Patient Experience Officer, Stony Brook Medicine
Dan Hughes
- Patient and Family Advisory Council Advisor, Stony Brook University Hospital
Meg Stern, MS, CPXP
- Patient Experience Educator, Stony Brook University Hospital
What You’ll Hear in This Episode
- 00:00 Opening and Introductions
- 2:50 Patient and Family Advisory Councils (PFAC) at Stony Brook Medicine
- 3:20 The role of PFAC advisors
- 5:04 Turning feedback into impact
- 8:40 Checklist for being admitted to the hospital
- 13:55 Resources for patients and families
- 18:40 PFAC key initiatives
- 21:07 Additional resources for patients and families
- 21:53 Patient feedback
- 25:11 Closing Remarks
Full Podcast Transcript
00:00 Opening and Introductions
Description of Video Studio: News desk with Stony Brook Medicine logo on the front. A big screen is behind seated experts with the HEALTH Yeah! logo (red uppercase lettering with a microphone at the top of the “L”). Music plays as the announcer introduces the episode.
Announcer
Welcome to HEALTH Yeah! where experts from Stony Brook Medicine come together to discuss topics ranging from the complex inner workings of an infectious disease to tips and tricks for staying safe and healthy all year long.
Nicole Rossol, MS, CCLS
Hello. And welcome to HEALTH Yeah! I’m your host. Nicole Rossol, chief patient experience officer at Stony Brook Medicine and administrator of our Patient Family Advisory Councils.
I’m here today with Meg Stern and Dan Hughes. And before we get started, Dan, could you introduce yourself?
Dan Hughes
Sure. My name is Dan Hughes. I’m the proud father of two beautiful girls. My daughter’s birthday is today. Happy birthday, Abby. And I have lived in this area my whole life. Got involved in this about six, almost seven years ago. So it’s been very rewarding. And other than that and lacrosse tournaments and driving to lacrosse games, that’s about my entire life. But on the side, I own a small Home Remodeling Company.
Nicole Rossol, MS, CCLS
Great. Meg?
Meg Stern, MS, CPXP
Hi everyone. Thank you Nicole, and thank you, Dan. My name is Meg Stern. I am the patient experience educator for Stony Brook University Hospital, and I am also the co-chair of our Patient Family Advisory Councils. And I’ve been sitting on the council with Dan and the rest of our wonderful members for about seven years at this point.
Nicole Rossol, MS, CCLS
Well, today, we’re talking about something that affects all of us — navigating a healthcare experience, and how we can feel more prepared before we ever walk through the doors.
This conversation is rooted in the work of our PFACs, where we partner with patients and families to better understand what matters most and use those insights to improve care across our health system.
One of the biggest things we’ve learned is this: In our own healthcare experiences, we often don’t know what we don’t know, until we’re living it. So in today’s episode, we’ll talk about simple, practical ways to prepare for a hospital visit or healthcare event, whether that’s having the right information, identifying your support system or knowing how to communicate what matters most to you.
We’ll also share how our PFAC advisors have helped shape meaningful change in the patient and family experience. Because at the end of the day, our goal is simple — to make healthcare feel more human, more personalized and more supportive for everyone.
2:50 Patient and Family Advisory Councils (PFAC) at Stony Brook Medicine
Nicole Rossol, MS, CCLS
So let’s talk about our Patient Family Advisory Council structure. We have our Stony Brook Medicine Patient Family Advisory Council, which Dan you’re a part of, and it’s made up of advisors from Stony Brook Southampton Hospital, Stony Brook Eastern Long Island Hospital and University Hospital. And then we also have our Pediatric Patient Family Advisory Council, as well as our Cancer Center Council. And we work all together to really improve the care for patients, families and the community.
3:20 The Role of PFAC Advisors
Nicole Rossol, MS, CCLS
So Meg, do you want to talk about the roles a little bit more of our advisors?
Meg Stern, MS, CPXP
So our advisors are really there to share their perspectives, to ask questions, to give us their feedback. And our roles on the Council are really focused on listening. So we try to bring those ideas, those questions, back to our healthcare teams so they can really translate those into meaningful projects and meaningful improvements for our patients and their families.
Nicole Rossol, MS, CCLS
So Dan, can you tell us a little bit about yourself and why being a member of the PFAC is so important to you?
Dan Hughes
Sure I’d be happy to. So, like I said, I’ve been on the PFAC for almost seven years, and it started because about seven years ago, my father-in-law was a patient here. He was not the greatest patient in the world, I will fully admit that, but there were a couple of hiccups along the way that I needed to step in and intervene and try to see if we could get things back on track. And in the course of that, I was introduced to Rosanna Ryan, who then asked me to become part of the PFAC that was being relaunched at Stony Brook.
At first, I was a little hesitant, because I didn’t know what it was. I didn’t know what its purpose was, how much time this was really going to occupy and to what end. But I have really found it to be tremendously rewarding. I’ve felt some great pride in the accomplishments that we’ve been able to make over the last seven years, small, steady, steady steps, but they’re steps, and they’re steps in the right direction, I feel.
Nicole Rossol, MS, CCLS
Great.
5:04 Turning Feedback Into Impact
Nicole Rossol, MS, CCLS
So could you share an example of one of the projects that you felt was very meaningful and that had (an) impact?
Dan Hughes
Sure. Well, first and foremost was our first one, and probably the one that I feel really captures what we’re trying to do, and that was the communication boards.
One of the problems when I was here with my father-in-law was the boards were never filled out properly and very rarely updated. And it was frustrating as a family member to walk in the room and not know who is in charge, who to reach, to reach out to, who to look to for answers.
So when we had the opportunity to redesign that, that was something that we really jumped right on.
And that was a common thread among all the other PFAC members as well was that issue. So we all unanimously said, ‘Yeah, this is the first thing we want to attack.’ So seeing that come to fruition, and see those boards be designed and made and implemented, and the continuing education to make sure that staff is updating those and, you know, unfortunately, my father-in-law has been back in so walking in and seeing it filled out was great. That was a great feeling.
Nicole Rossol, MS, CCLS
And I know you work closely with the care team to really decide what should be on the board, the really important pieces that would make a difference for patients and families, and making sure that communication was present for everybody that comes in and out of the room.
Dan Hughes
Absolutely. Anybody should be able to walk in and kind of have an idea of, obviously not confidential information, but you should be able to, as a family member, walk in and say, ‘Okay, who’s the doctor that’s in charge? Who’s the nurse? Was there any update or change from yesterday to it that I notice on that board?’ That’s important as a family member to walk in (to). It instills confidence in the care that your family member is receiving. And as a patient, thankfully, knock wood, I haven’t been that patient yet, but I would have to imagine that helps them as well.
Nicole Rossol, MS, CCLS
And the ‘What matters to you section?’ Do you want to talk a little bit about that?
Dan Hughes
We struggled for a while coming up with the wording for that section and what it should mean, and it’s come up a lot in subsequent meetings of not knowing necessarily how to fill it out. But that kind of was the point. The point was it needs to be determined by the patient, because what matters most to them could be their family, could be something specific with their health. It could be anything. It could be seeing the sun, you know, and making sure the shades are open — whatever it might be, that’s what’s most important to them. And at the end of the day, there isn’t a definition of that. I think that’s important as well — that it is constantly changing. It changes for every patient. So there should be questions from everybody of how that’s supposed to be filled out, because that means they’re really trying to get the answer.
Nicole Rossol, MS, CCLS
Yeah, that connection between the patient and the family and the staff is so critical. So that’s one way to really make sure that we’re having those conversations.
Dan Hughes
Absolutely. That means the care team is really interested in the patient, and they’re digging deeper than just what’s your name, what’s your date of birth. They’re digging deeper than that, and that’s important.
8:40 Checklist For Being Admitted To The Hospital
Nicole Rossol, MS, CCLS
And I understand that you and the advisors now are working on a new project, something to really help our community in terms of preparing them for a healthcare experience. Could you talk a little bit about that?
Dan Hughes
It’s a loose framework still that we’re working on, but it’s something of like a first aid kit for entering the hospital, whether it’s for the patient, for the family members, something that will be a guideline for people — kind of boxes to check off, so to speak, of things to know and be prepared for before you get to the hospital. Because when you’re in that situation, it’s stressful, it’s hard. There’s machines making noise, there’s questions, there’s family members calling you for updates. It’s stressful, it’s hard. The more of these things that you can have written down and know ahead of time, makes that whole process a lot easier. And obviously that also helps the care team take care of the patient as well, because now they have all of that critical information.
Nicole Rossol, MS, CCLS
Yes, so almost like how we prepare for a hurricane and we have our kit at home ready to go. This is something to just help people to start thinking about what to expect and what to plan for if they have a health care crisis.
Dan Hughes
So I have a terrible memory. So every time I have to go on a trip for a lacrosse game or something like that, I literally have to put a note in my phone of things that I have to remember to bring. And I do that. But if I was coming to the hospital, I wouldn’t necessarily do that, but we should.
Nicole Rossol, MS, CCLS
Right.
Dan Hughes
It also starts a conversation. You know, it starts conversations between family members and the patient, things that maybe the family doesn’t even know that the patient wants to know. They might think they do, but they may not really know the true answer.
Nicole Rossol, MS, CCLS
Yes. Much better to have those conversations before you’re in the situation where you may not be able to communicate in the same way. So important to have those.
Dan Hughes
Absolutely.
Nicole Rossol, MS, CCLS
Anything else that you think should be included in that preparation kit for patients and families?
Dan Hughes
So there’s a lot of things that need to be in there. It’s obviously going to change for every patient. Every family is going to be different. Every dynamic is different. There’s a few things that, just right off the bat, need to be there.
- Medication lists. That’s an important one. The doctors, the nurses, everybody needs to know what medicines the patient is taking.
- Allergies. Allergies are a huge one that can make a tremendous difference in how somebody is responding, especially if the patient can’t say what’s going on. Maybe they can’t communicate that they’re having some kind of a reaction. If everybody knows ahead of time.
- Healthcare proxy or advanced directives. Those are important to have in a place that everybody knows where they are and knows what they are. They’re uncomfortable conversations to have, unfortunately, but they’re conversations that people do need to have.
- Access to the patient portal. That’s an important one. If the patient can’t communicate with the care team, they also can’t communicate with their family members to tell them, ‘Hey, can you get on my portal and look for this MRI?’ or whatever the case may be. Those are again, difficult conversations to have, because nobody wants to be in that position where they can’t do that, can’t communicate that, but it is important to have that conversation.
- Care partner. That’s another thing that we’ve talked a lot about in PFAC, and that’s something that’s near and dear to my heart, because I am not my father-in-law’s healthcare proxy. He likes to call me his consigliere. One too many Mafia movies, maybe. But that’s kind of the term that we kind of came up with before we knew about that. It’s somebody who can step in and listen and hear medical advice, hear medical diagnoses that maybe isn’t that healthcare proxy, that maybe can have a little easier time to hear all of that while maybe not necessarily making that final decision, hearing it and processing that information.
You know, I’m a step removed from the children of my father-in-law, it helps me to hear hard things that they necessarily can’t hear or don’t want to hear. So that’s an important one. - Pharmacy information.
- A plan for dependents, children, pets. You know what’s going to happen if you’re in the hospital for longer than you think. Who’s taking care of these things? What needs to be taken care of?
These are all very difficult conversations to have, because nobody wants to think about being in a position where they can’t do that, but you have to. You just have to.
Nicole Rossol, MS, CCLS
Thank you so much.
Dan Hughes
No problem.
Meg Stern, MS, CPXP
Yeah, and it’s also important to remember that it’s not only okay, but we encourage you to ask questions, involve your care team in those questions. And it’s not just for your comfort, but it’s also for your safety. We want to be involved. We want to know those things so that we can prioritize your care.
Dan Hughes
Absolutely.
13:55 Resources For Patients And Families
Nicole Rossol, MS, CCLS
And many people, patients and families, are not really aware of all the resources that are available to them. You know, we have lots of information, of course, on our website about things like visitor policies and different resources that we have here at the hospital, contact information and what to expect. You know, (that’s) one way of really preparing. But I think the list that you’re talking about is really helpful to even start to prepare before you’re here.
Dan Hughes
Yeah, it’s again, nobody wants to think about that. But when I first became a member of PFAC and was asked why my standard line was — I grew up and still live in the shadow of those two towers. I’m gonna probably end up here sooner or later, unfortunately, hopefully for nothing serious, but I’m going to probably end up here. So it’s a reality of life is that you’re going to need some healthcare. So the more people know what your wishes are and the critical information that’s going to help you get better, the better off everybody’s going to be.
Nicole Rossol, MS, CCLS
And everybody’s so different, right?
Everybody has their own story, their own personal things that they need to really consider when they’re a patient here. So it’s important to have that perspective that everyone is different. (It) doesn’t necessarily work the same for every person.
Dan Hughes
Correct. My list would be very different from your list, from my kids list, you know, my kids list would probably make sure they had a charger. You know, my list would be a little bit different. But that’s the point (of) having that conversation.
Unfortunately, I had to go through it later on with my wife. She became critically ill and ended up in a different hospital system. But the things that I learned here, I was able to take and apply there. And I know it made (a difference). Unfortunately, it did not work out. My wife did pass, but it helped me so much while I was there — things that I knew, things that I could ask for, things that I understood because I asked. Those made a tremendous difference in our experience. It would have been so much more difficult to go through had it not been for that knowledge.
Nicole Rossol, MS, CCLS
Yeah, and thank you so much for sharing that. I know we’ve talked a lot about it in the past, and you know we’re just so glad we’re able to support you in any way that we can. So we’re sorry you had to obviously deal with that, but we absolutely are glad that you had some resources to be able to navigate, which was such a difficult time.
Dan Hughes
And again, that list, if I guess in my head, that was kind of what I was always trying to say. But until — I forget who brought it up in the PFAC meeting — the idea of a kind of survival kit for entering the hospital, that was what I had. I just didn’t know it.
You know, there were some things that I still didn’t know that I wish I had asked ahead of time, but I knew so much because of my experiences here. And the hope is that, if we can bring that knowledge forward and get people to have these conversations, it can make everybody’s experience — again, it may not work out necessarily the way you want it to — but it can make that hard experience that much easier by just not having to have all those questions unanswered.
Nicole Rossol, MS, CCLS
Yeah, and how we comfort our patients, right? If they have dietary needs, all those types of things. Even that simple information can make such a difference in keeping patients comfortable and helping to reduce their suffering while they’re here in the hospital.
Dan Hughes
Preferences, just basic preferences, you know? And again, some of this is for when somebody can’t necessarily communicate … but it’s also important when they can, because maybe they don’t speak up. You know, there’s a lot of people who are intimidated to say something when they’re the patient. That was my father-in-law — he would just sit there and listen. He didn’t always listen very well, but he would sit and listen, and he wasn’t an active participant in it. So even though he could communicate, it wasn’t much help.
18:40 PFAC Key Initiatives
Nicole Rossol, MS, CCLS
So it sounds like a lot of these experiences that you’ve had really directly impacted some of the key initiatives that we’ve worked on for PFAC.
Dan Hughes
For sure, I try not to monopolize things when I’ve been there, but I feel like that sometimes. I told Meg earlier this week that I feel like sometimes I’m the ball hog. But, you know, they’re important things to me, and if we can make a difference, let’s make a difference.
Nicole Rossol, MS, CCLS
What are some of the other initiatives that you’ve worked on?
Dan Hughes
Recently, we’ve been working on a restfulness packet. That’s an important one. Everybody who’s ever spent time in a hospital knows it’s not the most restful place in the world. So, and (with) more information coming out about the importance of sleep and performance and recovery, being able to get that rest, that’s an important one that we’ve been working on very recently. We’re closing in on the end of, I think we’re getting real close on that one. That was a big one,
Nicole Rossol, MS, CCLS
Fall prevention. That was one.
Dan Hughes
Fall prevention. Yes, that was a big one. Yes, that was, again, near and dear to my heart. My father-in-law was very unstable on his feet. So that was a big one.
Nicole Rossol, MS, CCLS
And then rapid response.
Dan Hughes
Oh, yeah, rapid response. So that was something that none of us had any idea was even available. Again, just, you know, hopefully nobody wants to think about being in these things, but the fact that a family can call for that, you know, the rapid response you see on every hospital show, the family can call for that if they feel that there’s a need. You don’t have to go get the doctor and wait for the doctor. And you know that’s an important piece of information for people.
Nicole Rossol, MS, CCLS
Yes.
Dan Hughes
That’s information that just isn’t out there, and through no fault of Stony Brook’s, it’s not like they haven’t been telling people that it’s there. It’s just people aren’t aware that it was.
Nicole Rossol, MS, CCLS
Yeah, helping to keep everybody safe. You know, we want our patients and our families to really feel that, as well as our staff, you know, trying to really reinforce that with everybody. So it’s important people know that that’s an option for them when they’re here.
Dan Hughes
And it helps the family know that they have a role in this as well, and they’re not just, you know, outside observers as well.
21:07 Additional Resources For Patients and Families
Meg Stern, MS, CPXP
And I think too, while we try to be proactive with sharing all of these resources, it is hard, and it’s hard to remember all of these things when you’re a patient or a family member in these situations. So we have resources like our patient advocacy department. We have our nurse leaders that round on our patients regularly. So there are resources out there for patients to utilize to get more of this information, or to, you know, get a refresher on this type of information. And these are resources that we really want our patients and their loved ones, their visitors, their families, to take advantage of.
Nicole Rossol, MS, CCLS
Yeah, at the end of the day, you’re a part of the care team. Our patients and our families, you are, and we want to make sure that we’re hearing your voice. Really important.
21:53 Patient Feedback
Meg Stern, MS, CPXP
So we get a lot of feedback from patients, and a lot of that feedback is positive, and it is so impactful for our staff to be able to not only see and hear and read that positive feedback, but I think it really hits home to the why for them. It reminds them why they went into this, why they’re doing what they do, and being able to share that patient voice in that manner with so many of our staff is is really such a powerful thing, and it’s something that we really aim to do here at Stony Brook Medicine, is to get that patient voice back to all of the staff, especially the staff that had a direct impact on that patient care.
Nicole Rossol, MS, CCLS
Yeah, and in addition to the advisors and the great feedback that you give us, we also collect surveys. We make sure we’re looking to see what those comments are. We do real-time rounding on the units, so we talk to patients, we talk to the staff. So we’re really trying to get feedback constantly so that we can really use that to make necessary improvements.
Meg, is there anything else you’d like our viewers to know?
Meg Stern, MS, CPXP
Yeah, I want our viewers to know how much their voice matters, how much their experience matters to us, right? And I’d be remiss if I didn’t. Thank you, Dan and the rest of our incredible patient and family advisory council members. I mean, we would not be able to do and elevate the patient voice the way we do without your continued support, your engagement, your encouragement.
So really, I mean the way you share your stories, the way you bring it to life, the way you make it so understandable for us that we can then bring that back to the health team. That’s incredible, and that’s really what allows us to care for our patients and our families in the way that we do, and continue to bring and elevate that patient voice and keep that at the forefront. So thank you.
Dan Hughes
Well, you’re welcome. It’s a pleasure. I’m happy to do it because, again, I want to see change. I want to help make this a better situation for everyone coming down the road who might have to deal with something like this.
You know, even patient advocacy. Meg brought up patient advocacy. I had no idea that this was even a department. I’d never even heard of it until I was here and was introduced to Rosanna. You know that’s a great starting point for people, … that people need to know about is that this department exists to help patients and their families navigate through all of this.
Nicole Rossol, MS, CCLS
Yes.
Dan Hughes
And that’s an incredibly useful and helpful resource that’s probably underused. I’m
sure it doesn’t always feel like that when you’re in your office, but it’s probably an underused (resource). When I talk to people about it, they look at me like I have three heads saying, ‘What are you talking about? What is this that you’re talking about?’ But I think that’s a good starting point for this list as well, is knowing that that department exists and it’s there to help you.
25:11 Closing Remarks
Yes, that is all the time we have today. Thank you to Meg and Dan. And thank you to you, our viewers and listeners.
If you’re interested in learning more about our Patient and Family Advisory Councils and how you can stay prepared, we encourage you to visit our website and get involved at: stonybrookmedicine.edu/patientcare/patient-family-advisory-council.
Announcer
Stony Brook Medicine is Long Island’s premier academic medical center. We transform lives through scientific discovery, education and care, and we bring together innovative research, advanced education and extraordinary healthcare expertise to set the standard for how healthy communities thrive. For more information, visit stonybrookmedicine.edu or follow us on social media.
*DISCLAIMER: The information provided in this podcast is for educational and informational purposes only and is not intended as a substitute for professional medical advice, diagnosis or treatment. If you think you may have a medical emergency, call your doctor or emergency services immediately.
