Patient and Family-Centered Care (April 9, 2013)

Webinar Transcript

Paul Tedrick
American Hospital Association - Chicago
April 9, 2013
11:00AM Central Time

Operator: The following recording is for Paul Tedrick with the American Hospital Association - Chicago for the April National Content Call on Tuesday, April 9, 2013 at 11:00AM Central Time. Excuse me, ladies and gentlemen. We now have our speakers in conference. Please be aware that each of your lines is in a "listen only" mode. At the conclusion of the presentation, we will open the floor for questions. At that time, instructions will be given if you would like to ask a question. It is now my pleasure to turn the conference over to Katie O'Shea. Ms. O'Shea, please begin.

Katie O'Shea: Thank you. Hello, everyone. Welcome to our April National Content Call. We will be highlighting patient and family-centered care today. On today's call, we will have Chris Goeschel, assistant professor with Johns Hopkins School of Medicine, Georgia appointment with the Schools of Public Health and Nursing, and Gail Panoff, chair of the Patient and Community Engagement Council at St. Joseph's Mercy Health System in Ann Arbor, Michigan. Before we begin, we'd like to remind everyone about completing our evaluation survey at the end of this call. You attending is very important and we use your feedback in shaping future content calls, so please take a moment after the call and complete the survey. Our session objectives for today, we will describe CUSP as an intervention to include health care delivery and care outcomes. We will define patient and family engagement. We will discuss ways that CUSP can be used to support patient and family engagement, and then we'll discover how one patient and family experience council engages patients and their families in care at the hospital. And now I'd like to turn it over to Chris Goeschel. Chris?

Chris Goeschel: Great. Thanks, Katie, and good afternoon, everyone. I'm on slide five, if you're following along with the slides for today's call. As someone who feels as though I'm kindred spirit with all of you, many of us have been on this trail of collaborative quality and patient safety improvement for quite a period of time. Moreover, many of us have used this comprehensive unit community-based program or CUSP framework to guide our efforts. When we decided that the focus for today's call was going to be patient and family engagement, I thought it would be really important for all of you to appreciate that this fits in exquisitely with the work you've already been doing. So, although, my title slide says, "More Work; Different Work; Same Work," I suspect that those of you that I've had the pleasure of working with upfront and close over the past several years know that there's really only one answer. And the answer is: This is the same work we've been doing. We're just adding another thread or some additional dimension to make the fabric of our efforts to improve quality of care and outcomes for patients even stronger.

So, if you look at slide number six, you see lots of different methods, and we've talked about these. We use many of these, but you see lots of different methods for how to help teams improve. We have the Toyota production system, we have CUSP, we have the model for improvement, PDSA, we have the performance framework from TeamSTEPPS.

But if we look at slide number seven, in fact, what we know and what we try to identify is that all of these, all of these, fit nicely under the rubric of CUSP, if you will. We're not really, the table that you have on slide seven is a nice crosswalk, and I think if you spend any time at all looking at this, you will feel a little less anxious perhaps about the concern; is this one more new thing? Really, it's not a new thing. It's really taking this CUSP framework and making it richer.

So, if we look at slide eight, some of you may know this; some of you may be getting on the call today because patient and family engagement is your passion and you're less familiar with CUSP. So, I'm going to spend a few minutes talking about the CUSP framework, the framework as it applies to CAUTI, and then trying to integrate just a bit what we understand about the importance of patient and family engagement and how that might fit within the CUSP framework. I'm going to spend maybe 15, 20 minutes max sharing my perspective about how this all works together and then Gail will share with you, as Katie introduced, some real examples of how patients and family that are engaged with hospital-based teams. And a most important part of this call, in my estimation, will come in the last half hour or so when we are really going to have a conversation with you about what works for you, what you're currently doing, where you need help, and why and how the CUSP framework might be able to help you with your efforts. So, what is CUSP? CUSP is simply an intervention to help local teams learn from mistakes and improve safety culture for really sustained and improved patient outcome. Sustained and improved outcome is the key point here.

Let's look at slide nine. If we know what CUSP is, then we're going to try and show where patient and family engagement fit within this construct. We need to all be on the same page about how we define patient and family engagement. Interestingly enough, as a nurse, which is my clinical background, it's a ittle daunting to me that after 30 years in my profession we're going back to saying, "Let's get patients and families involved in their care. Wouldn't that be novel and innovative and critically important?" When, of course, that's where we all began. The definition, however, that we're going to use for describing patient and family engagement as part of this national CAUTI effort, as a critical component of the CUSP framework, is the one that's written on your slide. And for those of you that don't have the slides in front of you, I'm just going to read this definition and talk to you a bit about it because all the rest of the discussion we have today is going to be anchored in this concept. "We believe that patient and family engagement involve collaborating with patients and families of all ages at all levels of care and in all health care settings. Patients and family engagement acknowledges that families however they are defined are essential to patient's health and their well-being."

If we look at slide 10, I tried to tap into the CUSP framework, which begins with engaging patients and caregivers in the work of change to say how might we engage patients and families in the work that we do, whether it's CAUTI or any other area. We are trying to narrow the gap between local performance and best evidence-based care, and there are several easy ways to do this. First of all, we can engage patients and families in the planning and design for how we provide care, and this is often something that takes place through formal infrastructure at the unit or hospital level. So, understanding that engaging individual patients and families is critically important. We're going to talk about that in a moment. But also understanding that those committees and task forces in the formal infrastructure in our facility has a key component of, I'm going to say, missing wisdom. If we don't have patients and families involved is a daunting awareness that hospitals and health care providers across the country are finally beginning to acknowledge, so, engaging patients and families in the planning and design of your care processes, and that typically happens through infrastructure. So, it's not the patient that's in bed 202 today or their family member who's pacing the hall, it's a patient or a family member that have been in your facility that understand the workings of it, that when they're home and doing well agree to be part of your infrastructure. But there are other ways to engage patients and families that are equally powerful and important, and those really do involve the family member who's pacing the hall and the patient in Room 202. Engaging patients and family members in every day care involves some really specific how-to strategies that we're going to talk about in a moment and perhaps an area where we began engaging patients and families, interestingly enough, a little before some of the easier places, is engaging with patients and families after an adverse event. And when the industry began to move really toward creating a just culture, really began to move toward transparency 15 years ago, getting the wisdom of individuals who had been involved in adverse events is one of the early and most powerful examples of what individuals can bring to the table. I think of my own early work in quality and safety with the Keystone ICU project and others where Sorrell King came and told Josie's story. Now, since that time, and that's been well over 10 years ago, there are websites, we have organizations with family members telling stories of harm that occurred at the institutional level, and yet with that level of engagement often comes a level of commitment to help the organization improve that you can't garner any other way. So, the three key ways that you can engage patients and families to consider are: Engaging them in planning and design via infrastructure, engaging in every day care, and engaging after an adverse event.

Now, if, that you look at slide 11 very quickly, not going to spend too much time on this; this is the four E's model that we have in the Hopkins model for leading change. And those of you that have been part of this work for a period of time know that in the early version this chart had, or table, had four key steps. We need to get people engaged. We need to tell stories about why the improvement activities we're asking them to participate in are important, and then we need to educate them. So, not every individual needs to go out and review the literature on their own. There are efficiencies to be gained if someone at a central place, like HRET or the Michigan Keystone Center or Dr. Stank and his team, bring together the evidence and say, "Here's what you need to do to reduce CAUTI's. The third E is execution. What do you need to do with the local levels? So, when do you tell the story and convince people that eliminating CAUTI are important? You give them steps, actions, what they need to do, then giving them tools to help them implement or execute is really important. And critically that last E is evaluates; how are you going to know that you're actually making a difference? All important, validity is important, and we need valid data. We can't keep doing more and more and more work if it doesn't translate into better and better and better outcomes, but in order to know what translates, we need to evaluate in a scientific fashion. So, those four E's have a pretty long history, but the table used to go: Senior leaders, team leaders, and frontline staff, and only recently have we added that critical fourth column, patients and families. Because, in fact, there are ways to engage, educate patients and families, to involve them in executing best practices, and to help us evaluate whether what we're doing really makes a difference.

So, if you look at slide 12, I'm not going to belabor this one. This is basically what you committed to, if you're one of the CUSP-CAUTI teams. The CAUTI interventions focus on care and removal intervention; that includes removing unnecessary catheters and providing proper care for appropriate catheters, and there's a placement intervention, which focuses on determining the appropriateness in the sterile placement of urinary catheter. Now, steps of CUSP, which show up on the right side of slide 12, are the same as they are in any other CUSP project; five steps: educate everyone on the science of safety, identify defects, make sure you have an executive involved with partnering with your team, learn from mistakes, those things that we call defects, and try out, implement teamwork and communication tools to fix the defects that you identify. Now, interestingly enough, these particular five steps, any and all of them, could involve patients and families, but there are a couple of steps in here that are particularly lacking if you don't have patients and families involved.

So, let's look at slide 13. You're going to remember that the science of safety principles include standardizing, so eliminating steps is possible, and that's really some of the technical work that we talk about in the CAUTI interventions, and creating independent checks and learning when things go wrong; what happens, why did it happen, what are you going to do to reduce risk, and how do you know that what you did actually worked? Creating independent checks and learning when things go wrong are areas where patients and families bring tremendous eyes and ears and a voice to the equation if we allow them to do that, if we invite them to do that. So, if we look at the goals of the CAUTI project, I'm going to ask you to think about it, and on your slides I actually inserted where I think patients and families have a key role. So, the number one goal of the CAUTI project is to reduce average CAUTI rates in participating units by 25 percent through the following steps: 1) Educate the health care workers about appropriate management of urinary catheters, including indications of the placement and continued use of those catheters. I inserted, "and patients and families." Why would we not educate patients and families about the appropriate management of urinary catheters? This is their body; this is their loved one. They see a number of caregivers coming in and out. Oftentimes, patients certainly on occasion go home with catheters. Having patients own the appropriate care for in-dwelling devices is critical, so, of course, patients and families can have a role in this. The second goal of the CAUTI project, to present the placement of unnecessary urinary catheters. I'm going to ask you in a minute when we do the Q&A, we'll talk a bit about whether you think that patients and families have a role in determining unnecessary. Imagine for a moment the number of times we just slip in a Foley; that's the way it used to be. When I was at the bedside, you didn't blink. You just slipped in a Foley because it was easier for us; it was easier for us, never giving a thought to the infection. What might it look like if we asked patients and families about the use of a urinary catheter? The third goal is to promptly remove urinary catheters that are no longer needed. And, again, I challenge you to think about what might the role be of patients and families in achieving this goal? Oftentimes, we leave urinary catheters in because it's easier for us. We don't have time to get patients up to ambulate, all those terrible reasons that we've used that were convenient for the caregiver. Perhaps with family members at the bedside, there's some opportunities here to involve them in both the decision-making and base care for patients. But when we think about those goals, we think about where and how patients and families might be involved in achieving those goals. I think it's also useful to think about the principles of safe design that we just talked about and remind yourself that in the early days of your participation in the CAUTI project, we said that the principles of safe design and by the technical work in teamwork, the technical work of inserting a catheter and using sterile technique, etc. The teamwork really focused on communication.

And if you look at slide 16, real quickly, a graph you've seen before that looks at the translation errors that sometimes occur, the awareness that we've tried to foster, that when one provider gives a message, it gets in-coded and de-coded by the provider on the other end of the equation. So, we often talk about communication errors around interpreting what I've said, based on your own context, and clearly we always do that. So, we try to be really specific, read back, ask for clarification, when we're communicating with other caregivers on our team. Why would we not involve patients and families in the teamwork component of challenging communication? Quite often, we educate patients and families at the end of the period when we think we've done all of our work; we talk at them rather than with them and we ask them to affirm that they've understood what we've said. That level of communication is fraught with risk that they're either going to de-code inappropriately or we're going to in-code what they're saying. We need to create the environment with patients and families that is set up the same way we're describing to communication with others on our team; that is, we have a specific question, we ask for feedback, we ask for clarification about whether we've understood appropriately, and we give plenty of time for others that we're working with, including patients and families as members of the team to provide added understanding that's in perspective to our initial conversation. So, the challenge of communicating doesn't just involve patients and families when we're giving discharge instructions or when we're giving explicit instructions about ambulating or patient's specific tasks. We need to be involving them in the communication around the entire episode of care. So, what might this look like if we're really going to involve patients and family members as part of our team?

Let's look at slide 17. In some of the most advanced organizations that I know that have had CUSP teams in place for awhile, there are units that have patients and families on their CUSP team. Think about that. These same organizations often have a patient or family advisory council and have patients and families that fit with administrators and clinical staff throughout the organization to provide input on policies and procedures. Why wouldn't we ask patients and family members whether our policies and procedures make sense to them? There's always more that we can learn about this work. Patients and families are equally involved in groups that are focused on how to communicate adverse events. And finally and perhaps in some of the most powerful and engaging opportunities for patient and family members to become a full-fledged member of the team is when we invite them to present at staff meetings and tell stories of care. I'll never forget,it was really pretty eye-opening for me and we all tend to go to perhaps our own experiences, but when my father many years ago was first in a critical care unit and then in a general med surg bed, one of the things that struck me is he appreciated the clinicians that cared for him. He loved the Environmental Services staff, just loved them. And when I said, "Dad, that's great. Why do you love them so much?" And he said, "You know, it's really interesting, but when you lay in a bed all day and you can't get up and walk on your own, you really study every surface of the room." And he said, "Every time the doctors and nurses go in and out of the room, they leave these fingerprints on the metal plates of the door handles." And he said, "I lay here," and he said, "It would just bug me because it looked really dirty," And he said, "When I mentioned it to one of the Environmental Health people, Environmental Health workers, they said, 'Wow!' And they leaned into my bed and they looked at the door handle and they said, 'I never noticed that. You are right.' And they cleaned the door and every time they'd come in, they'd say, 'Hey, Bill. I know you want us to clean the door handle and we're going to do that and we've told everybody else that we need to pay more attention to those things." Innocent, small, helpful; it didn't have anything to do with infection; though, maybe it did or maybe it didn't, but you would be surprised the stories of care, the stories of what it means to be a patient in your organization aren't always focused on the big clinical interventions or the procedures that are fraught with error. Sometimes it's the stories of care that reflect the culture of your organization, and you know as well as I do that as part of this CUSP work, as part of the overarching effort to improve health care throughout the country, hospitals are acknowledging that it begins and ends with the culture of our organization. So, patients and family members can help us create the culture that we all desire.

Let's look at slide 18 real quickly. So, we know, thinking back to some of the early work of Ron Hypites and others that we've talked about, we often in our CUSP teaching talk about the wisdom of crowds and we know that there is great wisdom by speaking input from diverse groups, and in early versions of our work, we would invite clinicians and administrators and think we had really gone a great distance because we no longer relied just on the physician or just on the physician and the nurse. So, there's the physician and the nurse and the respiratory therapist and the lab technologist and the environmental services worker and the administrator; shame on us for not acknowledging years ago that wisdom comes from patients and families perhaps more deeply than it does from any other group. And so, that notion of the wisdom of crowds suggest that we really do need to invite the voice of patients and families. When we think about team-based care, we, again, in our previous CUSP when we talk about alternating between convergence and divergence thinking; what does everyone think? What do the patterns of communication look like? Again, if you're starting this work and you're beginning to get patients and family members involved as members of the team, you're not going to change institutional policy based on input from one patient or one family or input from patients and families on one floor. You have an organization to run. And yet being able to collect that wisdom, to listen to it deeply, and then to take it to the balcony, if you will, take it up a level and think about what the system messages are that you're hearing from the very people that you are privileged to serve is where that engagement of patients and families can really help you at both the individual level and the system level. Now, before you invite patients and families to get involved in this work, it's really important, and I think Gail's going to talk about this much more dramatically than I will in just a few moments, but some core concepts that are really very important as we, I'm going to say, invite the most important members of the care team into the care team, we need to talk about those. First and foremost is a concept of dignity and respect. I remember early on in some of our improvement work where we struggled to establish dignity and respect as principles that we would adhere to when doctors and nurses talked with each other. We need to understand that patients and family members that are part of this care team, that become part of our process, deserve the same dignity and respect that every clinician does. They will not bring, most likely, the clinical knowledge and expertise and they may not bring the, I'm going to say, the social norms of the hospital environment to the table, but they bring something far more important; that is their experience and their willingness to help your organization continuously improve. So, they deserve dignity and respect, but there will be times when you're going to have to think differently and educate your clinical team on how to incorporate folks that didn't grow up in a hospital environment into this sharing space.

When we think about sharing, we're looking at slide 19 now, this is where, again, every organization is a bit different in terms of information-sharing; participation. Where, when, and how do patients and families participate? How do you collaborate with them? How do they get the feedback that they need? How do they grow in understanding the processes that we have in place, some of which are bound by regulatory requirements versus what we would desire to do if it were only up to us? So, this stuff isn't easy.

Dignity and respect, if you look at slide 20, health care practitioners need to listen to and honor patient and family perspective and choices. We need to understand that patient and family make-up, knowledge, values, beliefs, religious and culture background should all be incorporated into the care planning and delivery. One size does not fit all and we need to acknowledge that and this is where our patient and family colleagues can really help us.

When it comes to information-sharing, on slide 21, it's really essential that health care practitioners share complete and unbiased information with patients and families in ways that are easily understood. It's also critically important that we address their concerns or questions. This is that in-coding and de-coding slide that we share when we talk about communication amongst practitioners; now, we need to think more deeply about what that means when we're sharing information with the patients and families. It's also extremely useful and crucial to really establishing a culture where patients and families are recognized as the core of what we do and why we do it. It's essential that patients and families receive timely, complete, and accurate information so that they can participate in their decision-making. How often do we say, "You know, I'd like to talk to that family member, but I really have rounds to make." Or "I have other things going on; I'll have to get them tomorrow." It's not easy to do this stuff. It's not easy to think through how we might need to change the way we practice in order to meet the needs and expectations of patients and family members more fully, but it's also extremely empowering and exciting once you've begun to do this work to see how much patients and family members bring to our knowledge, into our capacity, to achieve the critical goals that we all strive towards, whether it's reducing CAUTI or any other clinical area where there's a gap between best practice and our practice. Participation as its basic participation means patients and families are really encouraged to participate in their decision-making at the level they choose. Sad but true story, we began a patient and family engagement activity, and one of the examples we gave was that patients, family members, could be involved in bathing patients or simple tasks at the bedside and pretty soon we had a couple of units where the off-load was patient's family members need to give the patients their baths. Well, there were times when the family member was willing, but the patient really didn't want that to happen. We need to respect that. There were other times when patients were willing, but family members weren't. We need to respect that; the level that they choose. We can't all of a sudden come up with a role and responsibility for patients and families and think that one size will fit all.

If we look at slide 23, collaborations, and I'm just about done here; I think that one of the things for all of us to think about as we go forward is that as patients and families and health care leaders and practitioners begin to collaborate in policy and procedure, development, and in program implementation and evaluation, the other level of collaboration is that we need to share what we are learning in our individual organizations with the larger collaborative project and we need to learn to share a cross collaborative project if excitement and curiosity about patient and family engagement is pretty new across the country. It would serve other large scale programs well if what the CAUTI teams learn as you go down this path, you share with other national collaboratives. You share through your handwork. It would be great, we're going to hear from Gail in a moment, from St. Joseph's, but it would be great when she finished, if we can talk about what you're doing in your own organizations. So, collaboration means participating at the local level and then sharing what we're learning; good and bad.

So, let's summarize for just a minute before I turn this over to Gail, so you can see how when it's really working, this is really an exciting, exciting time to strengthen your CUSP program, to add a little more fiber to the fabric of patient safety in your organization. So, safety we know is a property of systems; we need lenses to see this system and we need to include patient and family lenses. We need to provide, and we've said this many times in many ways, a safe space for all stakeholders, including patients and families, to share their voice. They need to feel safe speaking up. We should approach to learn from mistakes and improve patient safety in that engaging patients and family members in your care process is just another component of the CUSP initiative. So, what are some action items you might think about as you go forward today? Make sure that all members of the CUSP-CAUTI team view the science of safety video. Ask them to imagine all of the places where patient lenses might add dimension to your current effort. So, for individuals that have already reviewed the science of safety, go back and challenge them with, "Where do you think patient vision and voice would add dimension, would add value, to our current work?" Begin to construct a concrete plan to invite patients and families to join your team. You might consult with your CUSP executive, you might consider even whether the science of safety video might be useful for some patients and families. I've seen where that has been done. There are additional resources as there are after all of these talks on the CUSP website for ARC and at HRET, and you'll be able to go there and access more, and I think Katie O'Shea at the end of this might talk about some additional resources that are coming soon.

With that, I'm going to stop talking and turn the call over to, Katie, are you going to introduce Gail Panoff? I'm not sure if Katie O'Shea's going to introduce; I have to tell you that I've had the opportunity to be on a couple of calls with Gail now in preparation for today's conference call and what a delight, what a gifted and generous individual, and I think you're in for a really spectacular conversation around how to make some of the concepts that I've just talked about in theory and in terms of the CUSP framework, how to make these concepts real within a health system. So, Katie or Gail?

Katie O'Shea: Sure, Chris. Just to build on what Chris has already mentioned, we are so grateful to Gail for coming on our call today and sharing with us. As Chris said, she is talented and an amazing individual and she is here to share her story with us. Gail, would you like to begin?

Gail Panoff: Thank you, Katie, and thank you, Chris. And I just wanted to say I really enjoyed that presentation. I believe Chris really hit the mark with everything that she was saying and, as a patient, that means a lot to hear those words from health care professionals and delivering that message. And today, I would like to share with all of you my experience that I've had on the Patient and Community Engagement Council at St. Joe's Mercy Health System in Ann Arbor, Michigan, and a little bit of what brought me to the Council. In fact, it's been in my experience, I've had many experiences at St. Joe's in the past. I've had many surgeries. I've had many procedures done, tests done, in many different areas in the hospital. We also had our son at St. Joe's Hospital. But the most profound experience that I had along with my family was in 2009 when I was diagnosed with a very aggressive form of breast cancer. It was diagnosed as Stage III; it had spread through my lymph nodes and which required an extensive surgery and reconstruction and also following chemotherapy and radiation. During my journey it was very difficult physically for me, so this was not only hard for me as a patient, but also as my family watched. And I can tell you the day that we heard I had cancer I always say and, when I'm speaking to someone, when we hear words like "cancer" and we're diagnosed with an illness, we know just enough to be afraid. We're not educated yet. We don't know what the possibilities are. But right after I heard the word "cancer," I also heard the words, "Gail, don't worry. I will facilitate everything." And that was done for me and it was effortless. Also, so once I started meeting my team I heard words like "It's about living" and educating me about how much is being done on the battle against cancer. We often don't hear enough positives to know even if we have a diagnosis and where as far as Stage III, what a positive journey that can turn out to be. And also throughout my journey, I saw support and such compassion from not just the doctors, from all of the staff to nurses, whether I just walked into a lobby and it was the receptionist greeting me or my family. And my family was very important to them that they were okay, that they were being educated, and that we were made to feel very confident in the care I was getting. And like I said, you changed our lives in ways that it's hard to even find words or to express that. And we don't forget you and remember every moment, and it gets very emotional, even after all these years in how much you affect us. And we can often say, "Thank you;" we can say "Thank you" so many times. As patients, we want to do more and we want to give back and so that's how I came about the Patient and Community Engagement Council. It's a way to give back and to say "Thank you," because I really hold people in the medical field in such high regard and really have such a respect and also that you're wanting to always improve efforts. So, today is very important to be a part of and to be given this opportunity is truly a privilege for us to be able to speak with all of you today, and I say "us" because I'm speaking for our Council. I believe I'm speaking for so many at St. Joe's and for all the efforts that they're putting forth. So, I just wanted to say "Thank you" to everyone for making me a part of this day.  

And a little bit about our Council; of course, it's part of the St. Joseph's Mercy Health System and it started around 2010. We're on page 28; I lost my thought there with that. It started around 2010. I wasn't part of this Council at this time, but that's when it actually started. And Patient and Community Engagement Council in St. Joe's, I really believe we share a common goal to share the voice of the patient and that families are heard to help show care and its services are delivered. The Council also provides guidance to other councils that may be put together and also to individual roles that an advisor may fill. And we also help with the awareness of the work and outcomes of the council and that can be to associates, patients, and the community. And currently we have approximately 15 council members and I know our Advisory Committee at this time, and that includes staff and patient advisors; however, there are 55 patient advisors throughout the St. Joe network that also serves on other committees and in other capacities. We'll talk a little bit about that later on.

If you'd like to go to page 29, slide 29, just a little bit about who our council is accountable to; who we report to, and that's our Executive Director for Patient and Community Engagement at St. Joe's Hospital, and that is Susan Cater. And Susan is an incredible leader. And I believe our council is very effective and it's a very strong council, because we have such a strong leader and she's such a champion for this effort, and she also serves on our council. And I believe in order for a council to be very effective you need to have someone that's very experienced, and Susan has over 31 years of experience at St. Joe's and in the health care system. And she's so well-connected throughout the system, and also in the community that St. Joe's serves. And she is always very passionate about what she does and always makes us feel welcome and displays such leadership and is so well respected. And to me, that is so important if you're going to have a council, because it makes us feel very welcome and comfortable to be part of something that is so important. And Susan has to report as the Executive Director, she does report to the Quality and Safety Committee of the board annually on the council activities and their outcomes. And because of all Susan's efforts, again, I think that's why we have a very solid council and I really can't express that enough.

We also, if we go to page 30, we're always asked how do we get people to come to the council? How do we recruit or become an advisor? And we have several different ways in which we recruit, and that was a brochure that was developed, so we have something that can be put out and people have this available so they an read about this. We also have information on our website. We've also had a hold message developed. So, if you plan a hold, you hear about this. And, of course, there's always referrals from staff or of Council members. And then another effective area is the service recovery following a complaint in which someone may be referred. And if it's something you're interested in doing in giving back, getting involved to make a difference, there is an application process we then have to go through, but it's a simple application to submit, and then we actually have an interview that we go through. And, again, that's what Susan, who's the Executive Director, and she facilitates this process. And I say we go for an interview, but I really don't like to use the word "interview," because when I went to this with Susan, it was really a conversation that we had about me sharing my story and why I wanted to be an advisor and she sharing with me what the hospital is doing and the different councils and committees and what advisors do. So, it was really an enjoyable experience. And then if you continue that you want to be part of one of these committees or the council, there's also an orientation and training, which entails, of course, the confidentiality that we know as patients is so very important with the materials that may be discussed. And also what are responsibilities are as an advisor and the philosophy of patient and family-centered care overview. We're also, at that time, given tips of being an effective advisor and then you're usual items you'd go through in orientation as far as emergency codes and things like that. But it's a very informative orientation and very helpful before we get started in the process. As advisors, as I was talking about before, we have advisors on the council, but there's also 55 advisors total at St. Joe's and they play different roles, and we talk about that on the next slide, 31.

As far as the different roles that we can play, of course, is a committee member. And as a committee member on hospital committees, we, again, represent the patient or the family member's perspective to quality improvement efforts, and this is asked to be about a one year commitment in which, again, is a very effective way to get involved in a hospital and to be heard and to make a difference. We also have focus groups where patients or family, and this is a one-time group, that we can be part of. And I was fortunate enough before I was asked  to be on the Council to participate in a focus group, and what I thought was really great, the time I was asked, is it was a friend of mine that was actually asked to participate in the focus group, but they were asked to bring along someone that may have been a support group from them; they were involved somehow in their journey. And a friend of mine was actually diagnosed with cancer a month before us, so we were sharing this journey together. So, it was a real privilege to be able to participate in this focus group and was very educational for me, and I found out that not everyone did have the experience, but I had shared all the time. So, again, it's a very important group to be able to share experiences and communicate with staff at the hospital. And, again, this was Susan Cater that was also facilitating this meeting and, again, made us all feel so welcome.  We are also communication reviewers in which we can review educational materials, newsletters, maybe things on the website, or other materials, and this can also be done remotely or electronically. And these things are so important because if we don't understand what's trying to be communicated, then it's not effective, so, again, another very important way to make a difference. And we also do experience sharing, which we, again, talk about our journeys and we talk to different groups perhaps about what worked for us and maybe what did not work for us. As Council members, we share our journey all the time for those that come to our council. Presentations maybe at new orientations or maybe at educational seminars or committee meetings and patient testimonials, and, of course, things like today that are so extremely important that we're asked to be a part of. And, again, it really is such a privilege when you're asked to partake in these areas.

If you'd like to go to slide 32, just to talk a little bit about who represents our council. Again, we have 15 council members and the goal is to have about one-third staff and two-thirds patient and family members. And the departments that we have now serving on our council are the Clinical, Quality, Safety, and Risk, Nursing, Service experts, medical staff, and Patient and Community Engagement. We also have the other departments that are brought in as needed, of course, to learn, serve, and participate. And an example is we also have representatives from other hospitals and executive board leadership that participate in the meetings. And, again, this speaks volumes when the people that come to our meetings take the time out of their extremely busy schedules, but it shows us how serious we're being taken and how important the work is that's being done and that we are being, again, made part of this.

And to continue on slide 33, the patients and family members, again, the goals is to have about two-third patient or family members and Chris had talked earlier about the diversity. And the diversity is so extremely important when you're forming a council, so we're representing all ages and gender and race, ethnicity, religion, and we also have representation from all the communities that you serve is very important. And we also want varied experiences, whether they're good, not so good, or somewhere in between, and it has to be heard. We need to be very respectful and mindful of everyone's individual needs if we really want to be effective in areas of health care and to make a difference. And, again, Susan does an incredible job, I think, of getting a diverse group and having that representation, not only on our council, but also that serve on other committees in other capacities in the hospital.

If you'd like to go to page 34, just to talk briefly about a few of the contributions the council has made. There is just way too many to even talk about, but I will touch base on a few of them in which we participated in was a Welcome video is one of the first things - to welcome new patients to the hospital. And this is introducing the health care team, which I think is very comforting for a patient that is new to the hospital or for your family members. We also, what's called the C-Dip flyer that was worked on, that was intended for families and visitors that we need to be mindful to ensure that we don't spread germs. So, we need to be educated. There was educational material, which was requested for us to review, and which resulted in a much improved patient and family-centered flyer. So, even just flyers like that are so incredibly important to educate us as patients and family members. Another example Susan has given me, which I though was very interesting, was the language barrier and the terminology that's used in the medical world. There was a brochure on pressure ulcers and the story she had told me; a gentlemen was reading this brochure and he got halfway through before he realized what a pressure ulcer really was. He thought pressure ulcer was having to do with stomach ulcers and I would have had to agree 100 percent. I had no idea it had to do with bed sores. So, I think that's a small example, but very strong, powerful example to show how important the terminology is that we understand that in brochures for any educational materials. Again, we've had testimonials from advisors. There's a nurse residency program at St. Joe's in which we've been asked at times to speak to the new nurses, which, again, is always an honor and a privilege to be able to share our experiences and engage in discussion afterwards. I had the pleasure of doing this a couple months ago and it was very educational for me and a very emotional journey for all of us, but like I said, very strong and powerful for us that we're being asked to come in and speak to the future of the hospital right from the beginning. We also covered another area, like patient discharge instructions, which I thought was very important because of the fact the way we looked at discharge papers and we laughed. Really the order didn't make sense to us as patients and family members. So, they were very considerate about that and we spoke about materials that should be in the discharge instructions upfront. Also, as far as like a medication list should be very clear in the discharge when you're leaving the hospital; what medications are we to be taking? And also, as of what date? So, this is something this particular page can be used and kept in our purse or in your pocket to keep with you at any time, if you need medical care. Also, it's important, I thought this was a really good point, is when you're caring for a family member and we don't know all this information, so to have that right there and also to have any allergies or medications that they may have reactions to are also listed on there. And there were many other changes that were done, too, but those are just a few to point out areas that I thought were very, very important.

And if we'd like to go on to page 35, I had spoken about how advisors are throughout the hospital and serving on other committees. This is just a list of 12 committees that advisors are serving on at this time, and that does not mean they're advisors that on the Patient Advisory Council. These are other advisors that Susan has on these committees. So, again, you can see the work that Susan is doing and how well it's working for us.

And if you'd like to just turn to page 36, we really believe the end result is by engaging us as patients and family members in the care process and improving the education about health care needs, that we can continue as patients to take an active role in the decisions that will ultimately affect our care and our family's care. And I just think that having councils or being involved in the committees is so powerful for us and that you care and that you respect us and you truly want to give us the best. So, to be able to be invited to be part of such extraordinary teams is really an honor and a privilege and real compliment. So, I can't say how much this means to me today and how much it's meant for St. Joe's Hospital to continue to embrace me and other patients and family members and making us a part of such incredible care.

And, again, if you would like to know anything more about the structure and how much work it took to get the council started, on slide 37, we have Susan Cater's information, contact information, here, and she has extended herself to be willing to speak to anyone that would like to talk about the infrastructure or any other questions you may have regarding our council. And we also would like to extend ourselves as advisors if there is anything we can ever do in the future; answer any questions or participate, again, please feel free to call Susan, because we are always willing to help. So, with that said, again, I would just like to thank all of you for having me here today and, again, Chris and Katie, for all the help in making me feel so welcome and having such an extraordinary opportunity, so thank you.

Katie O'Shea: Hi. Thank you, Gail. Thank you so much for coming on the call today and sharing with us your experience and structure of the council so our listeners can take that information and they can apply it to their own facilities and hospitals and their own work engaging patients to improve care. At this time, Operator, if we can turn it over for questions, is anyone available?

Operator: At this time, we will open the floor for questions. If you would like to ask a question, please press the "star" key followed by the "one" key on your Touchtone phone now. Questions will be taken in the order in which they are received. Again, dial "star one" to ask a question. We are currently holding for questions. There are no questions at this time.

Chris Goeschel: Okay. This is Chris Goeschel and, again, many of you, we've worked together, so if you don't have questions yet, I'm going to ask a question of the teams that have dialed in. Is there anyone who dialed in today that has a fully functioning Patient and Family Engagement program? If you've got a program in place, could you let us know that? We're really curious about how many are well down this path. So, if you've got a program, can you remind us, again, Operator, how they, "star six?"

Operator: You can dial "star one" for a question or comment.

Chris Goeschel: Okay, "star one." So, hit "star one" and tell us about your program, if you've got one.

Operator: Our first question comes from Lynn Barrett with the Louisiana Hospital Association.

Chris Goeschel: Hi, Lynn.

Operator: Okay. She has disconnected. Our next question comes from Kathy Wallace with the Indiana Hospital Association.

Kathy Wallace: Hello?

Chris Goeschel: Hi.

Kathy Wallace: Hi. I was actually, had a question for Gail, and (1) I thought it was an excellent presentation from both of you today. But on the recruiting and becoming an advisory, I wonder if you could talk a little bit about the brochure and the content of the brochure as well as the application process and if you'd be willing to share kind of the interview and orientation training process.

Gail Panoff: Sure. I can speak briefly on that. As far as our brochure, as I said, it talks about the different areas that I had reviewed as far as the different roles that advisors play and also contact information in that. And the application itself really goes over just the basic information that you would fill out for any application, but there's questions on there that they will ask us what we would like to share about our experience, if we have any skills that we want them to know about. We also write a little bit about our past experience and our care at St. Joe's and there's also a section that you will write about why you'd want to be an experience advisor. On the application is also information that you indicate when you may be available, because everybody's not available every day of the week or at certain times. So, those type questions are on there. We also will list references and staff members we will list on there that know us as patients, whether they're doctors, nurses, or other staff and so, we complete that. And on the application it also lists, again, the committee member and what that is and there's a short description of that. Also, focus group participants, communication reviewer, and experienced sharing. So, there's a brief summary of all that on the application. And then there is also some optional information that is asked as far as, if you choose to answer it, about ethnicity or language spoken, religion; if there's any physical challenges or age range, but again, these are optional information that can be provided, but again is great when you're trying to add diversity throughout the council and also the committees. And it was, I thought, very simple to submit the application, and I was called right away. And like I said, speaking with Susan in the interview process, I'd say it was more conversation and Susan is also looking for people, even if your story may be a good story, it may be something that didn't go so well for you, but it's important that we are able to tell our story so that caregivers are open to hear what we have to say and improvements need to be done. We have to be very respectful and mindful of the people that we're always talking to. So, those are the things that we talk about as far as the application and the interview. And, again, this is all facilitated by Susan as well as the orientation that she goes over with us, and we are given the information in writing to review as well as reviewing it with Susan at the time of the orientation and which, again, we're given written materials to review and, again, the philosophy of patient and family-centered care and just practical details, even as to where to park, what to wear, ID badges. If we want to have additional conversations with other experience advisors, she will let us speak to other people, so we can ask any questions we may have of council members. And also, to let us know at that time what's involved in our first meeting when we're going to be introduced to the other members. So, it's very helpful to have all of this information. And, of course, she goes into it in much more detail and also even emergency type procedures that we need to be aware of being in the facilities. So, it's quite thorough in what she goes over with us and, again, educational before we even get to start the process.

Kathy Wallace: Thank you very much.

Gail Panoff: Uh-huh. You're welcome.

Operator: Thank you. There are no questions in the queue at this time. We do have another question from Lynn Barrett with the Louisiana Hospital Association.

Lynn Barrett: Hi. Sorry; somehow I disconnected myself. My question is this: I think back, one of the concerns is with the patient councils; how do you address when they're members of committees where confidential information is being shared? How was that addressed? Because I think that's going to be one of the first questions in presenting this information that hospitals are going to have.

Gail Panoff: With our council, again, it's discussed with us by Susan as far as the information that may be discussed at some of the meetings, whether you're on a committee, whether you're on the council, or anywhere that you're talking with medical staff, that it's very sensitive material sometimes that can be talked about, and we have to find that we are upholding that confidentiality and we have to respect the roles of the hospital and patient's privacy as we would want that privacy for ourselves. So, it's very understood by, I believe, the people that are on the council just how important it is and we take the material that is discussed very seriously and it must be kept confidential.

Chris Goeschel: This is Chris Goeschel and, again, I suspect when, again, this is something you're going to want to review with legal counsel and, I'm going to say, risk management in your state because laws do vary from state to state, but just as Gail suggested, what I have seen is that your patient and family council members, committee members as you do this, are volunteers, but they are invited to be part of what is often "protected peer review" Information. And so, as with any other committee member, Gail just did a nice job of describing the fact that there's an application process, an interview process, reference checks, basic orientation, and then as she suggested, just as you would any employee or volunteer, acknowledgement of the need for confidentiality. My sense is that in many organizations, I'm going to say they with patient and family engagement, I'm going to say not on the sentinel events committee, but on committees and unit settings where they can kind of learn how to do this in a way that's comfortable and get some of what might be "bumps in the road" worked out and then proceed. But, again, I think I would start with your risk management folks, but realistically, this is absolutely where the industry is going and appropriately so, but wise to check out how to do this specifically in Louisiana.

Operator: Thank you. As a reminder, dial "star one" to ask a question. Our next question comes from Gail Siedlaczek with St. Joe Mercy Hospital.

Gail Siedlaczek: I have a question of Gail. We're working a lot on safety issues related around Foley's and there are times that we're trying to change kind of a perception with the use of Foleys from the patient's perspective; a lot of times they're in pain or there's discomfort and the Foley's seen as being a positive thing, something that makes it a little easier. What would she suggest that we use information-wise to teach a patient about the safety behind maybe not having a Foley and have to work with other means of getting up and things like that?

Gail Panoff: Well, we've talked about how patients learn and, depending on who it is that you're trying to educate, I always think if you have the caregiver right there to be able to talk to, answer your questions, but what I think is really critical is to have information in writing, because a lot of times we don't always retain first time around or a lot of times once you've discussed something with us and then we can read about it, we often have more questions and we're then a little better educated to have a better discussion with you in how to handle a process. Or maybe it's a process that has to be discussed with family members, too, in not just that situation but others. Like we said, everybody learns a little different. Some people actually like visuals if there's something done. But like I said, from discussions that we've had, it varies to much on the individual needs of a patient.

Lynn Barrett: Thank you.

Operator: There are no questions in the queue at this time.

Katie O'Shea: Okay. Thank you so very much and thank you, Gail, and thank you, Chris. We've actually gone over our time today, but I would like to remind everyone that if you have any questions or something comes to you after this call, you can always contact Susan. For contact information, it's on slide 37; Chris, her contact information is at the beginning of her slides, or the National Project team and our email address is on the project's website. Again, thank you, everyone, for joining us today and we look forward to hearing of the great news when you are implementing this good work with your teams. Have a lovely day and thank you.

Operator: This concludes today's teleconference. You may disconnect.

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Page last reviewed December 2017
Page originally created November 2015
Internet Citation: Patient and Family-Centered Care (April 9, 2013). Content last reviewed December 2017. Agency for Healthcare Research and Quality, Rockville, MD.