SARAH: This is At the Core of Care. A podcast where people share their stories about nurses and their creative efforts to better meet the health AND health-care needs of patients, families and communities.
I’m Sarah Hexem Hubbard, executive director of the Pennsylvania Action Coalition and the National Nurse-Led Care Consortium.
On this episode, we’re going to explore the need for nurse-led health clinics to build capacity around addressing substance use disorder. Two patient advocates will share their perspectives with us around this issue, including Ivy Clark.
IVY: First impressions are lasting. The first impression, anywhere you go for treatment in the waiting area. And people sometimes that really need help will run away when they look at the waiting room and the way that it’s set up and the lack of privacy there. It's like even if there's been times when I needed help, I went to the E.R. and I waited. But then the registration comes and they ask you what are you there for. And then you look behind you and you look around me, you see people in earshot, and they can hear what you say. So I didn't get the chance to be totally honest about what I would therefore and what type of help I needed. And that's a really poor start to solving a problem.
As part of the wide variety of work we do at the National Nurse Led Care Consortium— we’re leading a two-year patient-centered initiative to cultivate a community of stakeholders who can speak to substance use care needs among vulnerable populations and what nurse-managed health clinic staff need to deliver competent, and culturally sensitive, care. The goal is to gain a better understanding into what optimal care delivery could look and feel like for individuals with substance use challenges, persistent pain, and - or - who have a heightened risk for infectious disease. Shelley Bastos is another one of our patient advocates.
SHELLEY: One important aspect that I am really like with the project is the webinars. So we do these webinars periodically, like every other month or so, and they have a focus topic. And the first webinar I was able to participate in and speak on the panel. And it dealt with the stigmas associated with M-A-T and in care in general when someone is suffering from substance use disorder. So I was able to convey stories that I had gone through and the experiences that I had both good and bad with providers. So when you have this audience of nurses, when I'm able to get across how I'm feeling in a certain environment with a provider, that sticks with them when they give care to other people and hopefully, it changes something.
We’re also going to hear later on from Kristine Gonnella. Kristine is NNCC’s senior director of strategic initiatives and will tell us about the goals behind this project, which is being made possible through a major engagement award from the federally-funded Patient-Centered Outcomes Research Institute, or PCORI.
KRISTINE: So after these two years, the hope is that the advice of our advisory group, our steering committee and our patient advocates, and the community that we've built, that we are actually putting forth a full research proposal. But we are being funded right now to build that community, which is really powerful, to be able to take the time needed, and I think just really recognizes to really build a community that really embodies the patient perspective, the patient experience and patient engagement. It takes time. It takes time to build those relationships. It takes time to find the common language by which you can come together to better understand the intersection of delivery of care and patient engagement and the patient experience.
SARAH: We’re going to turn now to the two patient advocates who are part of the PCORI Initiative. Shelley Bastos will share her perspective first, and then we’ll hear from Ivy Clark. Both will talk about their own patient experiences around substance use disorder and how they envision the future of healthcare delivery in this area.
SHELLEY: My name is Shelly Bastos and I'm a patient representative working on the PCORI project with NNCC, which focuses on patient-centered care.
I had no clue what treatment for addiction looked like. And when I made the first phone call, it was a nurse that picked up the phone and I was sick. I was crying and had nowhere to go. I didn't know anything. And she had made me feel so comforted. She had made me feel like, you know like everything would be OK. She didn't make me feel like it was my fault. And, you know, she reassured me that everything would be OK and to come in and let me know where to go. And that when I came in, I could meet with her and she would help me through it. And that really, you know, that helped me get through that first step to even seek treatment.
January will be 10 years that I've been in recovery and very early on before I even started treatment. I had my own stigmas about treatment, particularly M-A-T. I suffered from opioid use disorder. And so I built a dependency on opioids. And, you know, I was almost forced into M-A-T. You know, I tried to get treatment and I was told that that would be the only opportunity for me to get treatment. So early on, I had to decide whether that would be an option or I just wouldn't get treatment. So going into it, I just committed to, you know, taking advantage of all the opportunities that were there because I wanted the treatment bad enough. And at the end of the M-A-T program that I'm on is associated with Thomas Jefferson University Hospital, I realized that there was a lot of opportunities for not only for treatment but to advocate as well for other people suffering from the same disorder.
I think that I did so well because I already had a strong foundation. You know, I had a good support system. I already had a foundation with my education, with my work history. So I was able to almost pick up where I left off. And, you know, I was already pretty far ahead. But there were so many people in treatment with me that, you know, that's just all over the place. You know, the programs like, for example, there's a lot of mother and child programs and they're only for people who are in active addiction. So there were many people that were in treatment with me that was losing housing in the midst of their recovery. And they weren't able to access these programs with their children because they weren't in active addiction. So it led them to either relapse or they spent two years in a shelter as opposed to a year in a mother and child program where they could get more treatment.
There's so many barriers when trying to get into treatment. And there's so much politics involved with it, you know, with insurance companies, with, you know, who can provide the care. I mean, there's just so many barriers when going through treatment. And I experienced them from the first day. Like I said, you know, I was kind of forced into M-A-T when I actually sought treatment, looking to completely detox from everything. But I was denied that treatment. And it turned out well for me, you know, I made the best of it. So I just would say remove the barriers, let there be a wider range of treatment. You know, having treatment, more patient-centered. You know, basically, what we're trying to do here with providers and making the care more patient-centered, I think treatment should be that way instead of worrying about everything else first.
The barriers that exist just sometimes set a lot of people up for failure. And the unfortunate thing about opioid use disorder is that a lot of these people don't make it back.
With this project, this was a great opportunity to give a voice to patients when normally they don’t have a voice especially in the midst of seeking treatment or going to a provider. One important aspect that I am really like with the project is the webinars. So we do these webinars periodically, like every other month or so, and they have a focus topic. And the first webinar I was able to participate in and speak on the panel. And it dealt with the stigmas associated with M-A-T and in care in general when someone is suffering from substance use disorder. So I was able to you know, I was able to convey the stories that I had gone through and the experiences that I had both good and bad with providers. So when you have this audience of nurses. And those stories and you know, when I'm able to get across how I'm feeling in a certain environment with a provider. So, you know that sticks with them when they give care to other people and hopefully, it changes something.
IVY: My name is Ivy Clark and I'm a patient representative.
What I think about what happens most of the time when I go for help. Whoever is responsible for the way that the waiting room is set up or the procedures that we have to go through in order to receive help. That's where I think the change needs to be made. But health care people who are always, for the most part, wonderful people. They do what they have to do under any circumstances. The circumstances for both of us may not be the best.
I call a waiting room an auditorium. The seating area, which is usually people who sit really close to one another, on top of each other. And they don't want to, but they don't have a choice. The stage would be the registration area where it's all eyes on me once I come in that environment. Being sick and needing help, that's not the best place to be where you need people looking at you. And there always needs to be an area where you can tell a person why you're there or what your problem is without everybody being able to hear or see.
I've seen people turn around and not get the help that they need because of the way it is set up initially. I've seen people actually turn around and say, oh, I'm not going in there. I'm not sitting in that, and they'll go home and not get the help that they need.
To me, a major part of the problem, like I said, the first impression. If that's addressed, the initial approach to getting treatment, getting help and doing something about the waiting room or the waiting experience being improved. That, in turn, could make the experience for treatment, the whole engagement to be more pleasant or more fruitful or, you know, more constructive. If you start out on the wrong foot, it can cause problems, you know. So, like, there are times that by the time I did see a provider, I was so frustrated and aggravated. I really didn't want to talk. That's how my attitude was like, you know, overwhelmed with this, forget what I came here for I had to wait two or three hours sitting next to somebody or and when I get to the counter, you ask me out loud, what are you here for? How can I help you? And I tell you the truth. So I'm so frustrated and annoyed by then, you know, because I'm getting off to a bad start and I might not have the best attitude that I should have when I finally see someone.
The waiting room, the way it's set up confidentiality is always breached one way or another. I have issues or different ailments. Even if it's another worker, if I'm talking to say like the administrator who's registering me, I may not want the person in the next booth to know what I'm there for.
I think money needs to be invested in maybe different seating areas, different types of chairs, activities. Somebody should look into the privacy area where we don't get registered, maybe even find a different way to call a person for registration without using their name. Maybe, you know, I'm sure if it's researched and somebody take the time and put into it, it can be a much better experience. And people will pour their hearts out and some stuff will get accomplished. Because the way that it is, it's not working. It's awful and people will not even go.
Not only does the patient suffer, but the person that's providing the help also needs better working conditions and maybe even more money.
You know, because if people are paid, compensated properly. It makes a difference in their performance.
I knew that I really needed to be an-inpatient in order to solve my problem. I knew my issue couldn't be solved in the emergency room setting one day. You know, so I know I needed treatment for a while. And that always depends on how many beds available. You know how lucky you were at that day. And then sometimes there were no beds available or you weren't very lucky that day. And there's always that provider who goes the extra mile. So we don't have one here. I'm going to find someone for you somewhere who were opposed to those who say we don't have anything. I'm sorry, I can't help you. And they show you the door and you're as sick as hell, Mentally, physically, and they show you the door and they wish you luck, and they let you out the door.
I've been fortunate enough at times when I had people that say, look, I can't help you here, but I know somebody that can help you someplace else. Usually like I'm saying, the person going beyond the call of their initial duty. So thank God for those people. Because they're out there and they're in the industry and they're the reason why a lot of good things are being done. It also has a lot to do with the type of person that they are. You know how they feel about themselves and other people. Some people do it for the job. Some people love their work. Some people hate their work. You know, or they hate their environment, that they're working in. So that's really very important.
There comes a time when a decision has to be made about how to treat a person. OK, let's say, like the questions, you know, or the interview or the intake process. Do you use drugs? And I know if I say yes, I use street drugs, then tell me come back when you're clean, you understand? So it's all a game, you know. It's about knowing how to play the game on both ends on the patient and the provider end. What do you have to do to get the help that you need, you know, and unfortunately, I couldn't really be honest sometimes and get the help that I need. I'm glad that I had the problems that I have had. I don't have them today, but I've had them. And the reason why I'm here talking with you today, because I want to make a difference.
I want to be better. So I fought, even though I felt in my time that they can get the professional help that I needed. I hung in here.
I was fortunate enough at one point to get really good mental health therapy, but it seemed like that type of therapy to the type of therapist that I have. You see, insurances are not paying for them. I don't see that type of treatment or, you know, people going that far to really helping more. Is like right now, it's like so many things going on and things have gotten worse. Health care have gotten worse. In the way that its approach that I don't see it getting any better in it based on what it's about money. It's about what type of insurance you have, it's about what area you live in.
I hope that I can help somebody who may experience what I experienced all those years before I was able to really get the help I need. I feel like only as there's only a certain amount of help that anybody, any institution, any professional, any provider can give you. You have to make out within yourself to get better or to be better. You have to do your part. So. And there's a time when people don't get better. You know, like I've gotten better and I know I take a lot of credit for it. So I made that decision in my mind and my heart.
SARAH: Now that we’ve heard some direct patient perspectives around substance use disorder treatment and care, we’re going to turn to my colleague Kristine Gonnella who’s overseeing the PCORI project. Kristine is senior director of strategic initiatives for the National Nurse-Led Care Consortium; and she’s going to first dive into why authentic patient engagement matters.
KRISTINE: I think that we often forget the way we deliver a message, we often forget how that can be interpreted. And I think my take-home message with working so closely with Ivy and Shelley is that there's patient engagement, right, which is sort of the context by which the PCORI work is grounded in. Right. What are the patient engagement techniques that you utilize? What really continues to ground me is there's patient engagement, but then there's the patient experience and that, the patient experience can be very raw. And those same patient engagement strategies that you think that you're using, that people talk so confidently about don't necessarily translate into a true, engaged and well-received patient experience. So I think telehealth is a really great example of that. Are you able to really engage a patient in where they're at with their health care? Are you getting the full story? You know, you would hope if that's the only platform that we have during the pandemic to be able to engage, then you need to figure out how to optimize that. You need to figure out how to connect with your patient to make sure that you're getting the full scope of what they're experiencing and what their needs are. And I think that it really, to me, it's been very humbling to recognize that how much of medicine is an art and a science. And the art is how do you deliver it and how do you deliver it effectively? And frankly, how do you deliver it effectively with all the barriers that exist right now? And the science is, you know, is the evidence that is put forth. And the hope is that, NNCC, is supporting nurse-led care that really sort of embodies the best of art and science, and really sort of grounds the way that nurses provide care is really grounded in an art of looking at the whole patient and engaging the whole patient. And I think that's something that we're hoping to try and get a better sense of through this work.
SARAH: While the patient experience is paramount to helping nurse-managed health centers boost their care capacity around substance use disorder, Kristine says other key drivers will need to be taken into consideration as well, including ultimately assessing the effectiveness between various providers.
KRISTINE: There's different modalities of providing substance use disorder programming; frankly, but also, depending on who the provider is. Right. So looking at it, is that being overseen by a physician? Is it being overseen by a nurse practitioner? Or a physician's assistant? I think the PCORI work gives us an opportunity to really look explicitly at the uniqueness of providing substance use disorder programming within nurse-managed health centers and how that is different. So what we would look to do is at some point after this particular project has ended, is then to eventually look at comparing what does substance use disorder programming looks like in a nurse-managed health center space vs. in maybe another health center where physicians are providing care? And there would be that opportunity to sort of compare what the patient experience is and patient engagement looks like in those two settings. And certainly not seeing that one is better than the other, but being able to more explicitly understand and describe and measure sort of what the unique differences are, because I think oftentimes that's like one of the struggles that nurse practitioners in particular face is, well, when they're providing primary care, what's the difference between a physician providing primary care and a nurse practitioner providing primary care, if they're both able to do that? And I think what we want to be able to do is more explicitly with data to support what the differences are. Certainly not saying that one is better than the other, but being able to more effectively demonstrate the uniqueness that a nurse practitioner brings, based on the evidence, into being able to provide primary care or in this case, substance use disorder programming. So as part of our PCORI work, we have position papers, and one that we’re looking to publish. But the one around substance use disorder programming, in particular, medication-assisted treatment, it’s interesting because physicians can provide the full gamut of medication-assisted treatment; while nurse practitioners, even with a waiver, are only able to provide one medication in that full gamut of medications. And I think the big question is, why is that?
If we recognize that to better address substance use disorder, we need the providers to be able to effectively not just prescribe and treat substance use disorder or opioid use disorder. We need providers to be able to do that in conjunction with counseling. Why aren't we arming our providers to be able to do that?
SARAH: As Kristine mentioned, plans are in place to release position papers as part of this project. But in the meantime, the initiative has also launched an in-depth learning series of related webinars that are widely available, and more are in the works.
KRISTINE: Because it was a national scope, we really needed to make sure our patient advisors were working closely with us in the design of the project and the outreach and the content. So just for reference-sake, as part of this project, we proposed a learning series of 10 webinars and three-position papers. And so part of the engagement with our patient advisors, Ivy and Shelley, they have helped really identify where our content needs to focus on, what sort of questions we need to be answering in our webinars. And they are bringing in their real-life experiences into the design and the development of each webinar and the content that is put forth. And that's a very raw experience for everyone.
So I mentioned this 10-part learning series, we really have formatted those webinars as a forum to be able to engage. Which, again, is no easy feat when you're trying to do it on a national level. But we have you know, the first 15 minutes is structured as a dialogue discussion with our patient advocates, our patient representatives. So it's always sort of asking questions related to sort of the theme of the of the content of the webinar. And then we always have like 20 minutes where there's delivery of the content. And then, we have 15 minutes after that for like a Q&A session where we really ask for feedback from our audience. Sort of woven into that are a couple poll questions where we're trying to engage the audience more directly on their feedback on particular questions that we might have. So we really try and format it in a way that we’re both information sharing as well as information receiving from our audience to help drive then the content of subsequent webinars. And then ideally, a larger grant proposal. When we get to that point where we be ready to put forth a larger grant proposal, we will really engage our steering committee as well as probably bring in other consultants to help us sort of build that out. I think that the cool thing that I really think has been well received with our audience is this sort of information sharing that is actually you're able to do in a virtual context. And I think that, you know, really telling for us was just this most recent webinar that we did where we asked the audience like, you know, do you have feedback on how we can continue to build out this topic area? And they were like, yeah, we want tangible ways in which ideas and how we can start to really look at racism within our healthcare spaces. But not only that, in our nursing paradigm. And that led us to do a literature review of nurses that were working in this space and doing some direct outreach to those nurses to get them engaged in the content for the next webinar. And so it's an iterative process. It's very fluid. We try and be really cognizant of the what is happening in real-time, especially because there's so much happening in real-time that's impacting our patients indirectly, our patient advocates that we need to be really as sensitive and aware of what that is and really see this as a unique opportunity to elevate the patient experience at a really critical time when I think that our health care delivery system more broadly is failing our vulnerable and underserved communities.
I think that the pandemic has not created the fractures. I think those fractures have always been there. But it is certainly highlighting those fractures in our health care system and the inequities in our health care system. And it’s really making that divide even greater. And so I think the really unique opportunity that NNCC has with this project is to be able to directly address that in the content of our webinars so that we can certainly not point a finger at, but really try and cultivate a constructive dialogue and be thinking about and sharing information and how we improve these systems. And one of the most powerful things that could immediately happen is improved communication, that doesn't cost anything. But I think, you know, the common theme from our patient advisors has been like the way that they are receiving communication, the way they're being communicated to and, you know, and the way that it's being delivered.
We often think about, like, you know, the fractures in our health care system and the inequities. And we think about these big sort of system changes that need to occur, which, frankly, can cost a lot of money and are really daunting. But we often overlook some of the more basic things that could be adjusted and fine-tuned that don't cost a lot of money. And I think the power really sits within the direct service providers to really think about how am I communicating? How am I managing my own anxieties in a really uncertain time? And how is my messaging getting across to my patients? And how are my patients receiving it?
SARAH: And if you’re interested in the webinar learning series Kristine was talking about, all the webinars are recorded and available at nurseledcare.org You can also sign up for our listserve and follow NNCC on social media @NurseLedCare, especially since we’re planning to release a separate series of webinars about what it looks like to deliver care during the time of the pandemic while keeping the patient experience front and center.
SARAH: Special thanks to Shelley Bastos, Ivy Clark and Kristine Gonnella for taking the time to talk with us.
Funding for this podcast comes from the Center to Champion Nursing in America, which is a joint initiative of the Robert Wood Johnson Foundation, AARP, and the AARP Foundation...along with the Pennsylvania Action Coalition.
Stephanie Marudas of Kouvenda Media is our producer and we had production assistance from Brad Linder.
I’m Sarah Hexem Hubbard of the Pennsylvania Action Coalition. Thanks for joining us.