Breaking Through Stereotypes: How to Share the Patient’s Voice through Research and Technology
What does research tell us about an individual’s identity? How do we leverage technology to personalize care? Susannah Rose, PhD lays out what years of research has taught us about what patients’ want and need from healthcare of the future.
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Breaking Through Stereotypes: How to Share the Patient’s Voice through Research and Technology
Podcast Transcript
Adrienne Boissy: Welcome to another episode of Studies in Empathy, a Cleveland Clinic podcast exploring empathy and patient experience. I'm your host, Adrienne Boissy, Chief Experience Officer here at the Cleveland Clinic in Cleveland, Ohio and I'm very pleased to have Dr. Susannah Rose here, who is the Associate Chief Experience Officer here at the Cleveland Clinic. Susannah, welcome to Studies in Empathy.
Susannah Rose: Thank you very much Adrienne.
Adrienne Boissy: So that's a pretty big fancy title but tell me a little bit more about your role.
Susannah Rose: Well my role is helping patients' voices be heard and I think that that's one of the most important things that we can do in health care and how that translates into people's experiences while they're in health care. So I focus on doing research and program evaluation and one thing that's important to that is how we understand what we're doing and how it works. So when we are thinking of a new program or initiative or doing something different to help people's experiences in health care, we need to know if it works or not and so the way I like to work is to hear people's voices themselves and to do systematic research in program evolution, so we know that what we're doing actually makes a difference.
Adrienne Boissy: Research in the field of patient experience is relatively new, right? I think it's early in its growth. We used to just kind of do stuff and hope that it worked. So tell me a little bit about how you came into research and a little bit more about your background that makes you a prime fit for this role.
Susannah Rose: Well I started in my professional career as a clinical social worker, helping people with cancer cope with their illnesses and I was a social worker for about almost 10 years at Memorial Sloane Kettering Cancer Center in New York City and one of the things that was really striking for me was that we did a lot of stuff to help patients and we just assumed that it was helping them and so I got very interested in research and how we can systematically evaluate how things are going for patients and so then I left and I went to Harvard and got a PhD and learned how to conduct a very high quality research and I now apply that to how we can hear patients' voices and I know sometimes research sounds like a kind of dry topic and not too exciting.
Adrienne Boissy: No, not at all. It sounds amazingly rich.
Susannah Rose: But as you know, Adrienne, I get very excited about doing research and the reason why is that discovery of the unknown and also sometimes the discovery of findings that you're not ever quite sure you're going to find and I think that comes up a lot in the field of research and patient experience because oftentimes doctors and other professional caregivers assume that they know what patients are thinking or feeling or wanting but often, those perceptions are mistaken and so bringing up unexpected voices or unexpected perspectives is really fun.
Adrienne Boissy: Yeah, aren't there great studies out there that say, if you ask doctors how often they thought patients were taking their medicine or what they wanted at end of life or for surrogate decision making that we think we know yet we don't really. Tell me more about that.
Susannah Rose: Yeah. So there's quite a bit of research, especially over the last few decades, on truth telling, for example, with patients. So in cancer for example, there used to be a conspiracy of silence and we wouldn't even tell people that they had cancer. Often, it was hush-hush and often in the back rooms and sometimes discussed with family members but what we've learned over time is that, that often created even more fear and a distance from the patient from everybody else who knew the truth and they had to keep that secret and so now, with most people, they actually do want to know the truth and I think that dialogue between people has helped not only patients who have cancer and other very serious illnesses be more engaged with either health care but also feel more connected to the professional caregivers and to their family members.
Adrienne Boissy: So I can certainly attest that you are one of the most excitable people I have ever met about research and we're just really blessed to have you in the office of patient experience leading this work.
Susannah Rose: Well thank you Adrienne.
Adrienne Boissy: Thank you for everything you've done. So you alluded to a little bit prior work with cancer patients. Can you tell me a little bit more about how you think that's shaped you and your approach to this role?
Susannah Rose: Absolutely. Working in oncology for so many years helped me understand that everybody gets cancer. It hits the rich, the poor, people from the United States, from outside of the United States, people from all religions and I think that one of the most important things I learned was that everybody hears and feels that diagnosis differently and that feeling is often overwhelming, especially at the time of diagnosis or at other pivotal points in the cancer's trajectory and what that means is that as a person witnessing that, I learned I have to be present for those emotions because if I wasn't present for those emotions, then other people around me also were looking at me to have that connection with people and if I had turned away, then that would have isolated the patient even more.
So there was one example of a young woman, who ... I think she was almost maybe turning 19 and she had metastatic ovarian cancer, which as you know, is a very unusual diagnosis for a person so young and her family knew she was dying and she knew she was dying but they weren't coming together to talk about that and so she would talk to me privately about her fears but she was worried about burdening her family and so she asked me to bring them together to talk about her death and what that did was make us all present, we all cried in that moment when she was talking about the fact that she knew she was going to die in the next few days and her family members were so sad but they also were so happy to have had that moment and they asked me to be present during her death process to help them all sort of pull together at this very touching and emotional time for all of them but in a way that I could help all of us be present and not be overwhelmed by all of that. I think that's some of the most important things that I could have contributed during those moments.
Adrienne Boissy: You should have warned me you were going to tell that story.
Susannah Rose: I have a lot of them Adrienne.
Adrienne Boissy: So a couple things you said resonate. You said everybody gets cancer. That kind of hit me in the chest when you said it. What does that mean in your lens?
Susannah Rose: Well, I think what I mean by that is that we tend to think that only certain people sometimes get certain diagnosis and I think this is perpetuated by our culture that even sometimes when people get sick, they blame themselves oftentimes. Particularly, there are sometimes there are causes such as maybe smoking and things like this but many times, we do not know the cause for anybody's illness and so it's important to know that all of us can empathize in this sense because we can all be part of being part of an illness and it's not the only thing that a person is. So you have whatever people brought with them into the walls of that cancer hospital, they are that person still and often, that is overlooked once they assume the suit of cancer or of MS or of heart disease and I think one of the most important things that's lost sometimes is that identity of who people are before "they have cancer" or heart disease.
Adrienne Boissy: Yeah, so love this track of conversation. The thing, that statement, everyone gets cancer, made me think about was also this idea that there's probably very few of us in the world who don't know someone or love someone or have cared for someone or known somebody who has had cancer and so to me, that also sort of meant, we're all touched by it and often touched by it repeatedly over the course of our lifetime in different ways and some of what I'm hearing you also talk about is this concept of identity, right, that people have the disease, they aren't the disease necessarily. I hear a lot about that in multiple sclerosis in my world that sometimes becomes all-consuming and even survivorship can be that way, right? In order to be a survivor, you have to wear pink and for some people, that may be an appropriate identity to take on but not for all.
I'm going to switch gears a little bit. You are a, I would say a renowned expert in conflicts of interest research, you've published some nice pieces of work in [inaudible 00:08:48] and other places around conflicts of interest and also what we've learned about patient advocacy groups. So talk to me a little bit about that piece of your work.
Susannah Rose: Yeah, so as health care and many industries move forward, a lot of innovations occur with partnerships between for profit hospitals, not for profit patient advocacy groups, such as American Cancer Society or American Heart Association or many-many others and also what we call industry or in other words, for profit corporations, and some people refer to these partnerships as very innovative and can be amazing in terms of what they can bring, in terms of innovations of treatment and many other exciting things and often things you could never have one of those organizations do on their own.
However, we have to be aware that financial relationships with other companies can also sometimes shade people's missions and what they want to accomplish and so the idea here is that conflicts of interest occur everywhere and all of us are susceptible to conflicts of interest and so one thing I want to mention is that this is not necessarily mean that somebody did something bad or an organization is bad in some way. In fact, as I said, it could be quite awesome and good but we also need to make sure that the patients are being served.
So conflicts of interest can increase the likelihood sometimes that people lose focus of that mission and may increase the risk of harm to patients or to research participants and we need to make sure that people stay true to their missions and so as you mentioned, one of my research topics has been, how industry partners with patient advocacy groups and patient advocacy groups are so important in American health care because they're often the ones raising the voice of the patient in a very powerful and often organized way, such as lobbying for new and innovative drugs and treatments, providing financial support to patients to be able to go to chemotherapy, for example. They provide so many amazing benefits but there were several articles written in the media about concerns that those organizations may be too aligned with industry interests and so I've done some research on how patient advocacy groups can stay true to their missions and help the patient’s voice be heard in an unencumbered way.
Adrienne Boissy: That's fantastic. Thanks for bringing it to the national attention. I know it's got a lot of attention, especially recently. I know when we had patient advisory groups, we talked to them about what they would want to know about their clinician's conflict of interest and of course, it was one of those interesting ideas where the patient said they wanted to know everything and we thought there was some monetary limit as though the only conflict is financial, that they would need to know. So that inherent disconnect played out. You have also done some work in both wait times and virtual care. I just want you to comment, I know we can't dive into it deeply in this conversation but we were exploring why people wait. Can you dazzle our audience or just tease them a little bit with some forthcoming information about what we learned there?
Susannah Rose: Yeah, so one of the most exciting projects I've completed just in the last few months is an assessment of patient's perceptions of how long they have to wait to get their surgeries and so we conducted a study with hundreds of patients here at the Cleveland Clinic receiving all types of surgeries and we spoke with them and surveyed them about what they thought about that, what they thought about the scheduling process, what they thought about how long they have to wait, and one surprising finding is that patients do have to wait quite a bit of time for many of their surgeries, sometimes up to four months. Obviously those are not urgent surgeries or we would have provided the opportunity earlier but what's interesting though is that patients generally were not dissatisfied with this wait time.
So there are some patients who absolutely were dissatisfied, we want to put those aside but in general, people thought that even four months was okay for them and why I think this is important is two really drive home points is that a, this reflects, again, what I was saying before about sometimes professional caregivers assume that there's a problem from patients' perspectives when perhaps there's not and so we need to listen to people about what they think about these things before we drive a lot of resources towards fixing a problem that may not actually be a problem but might accurately reflect people's preferences. Many of our patients said that they delayed their own surgeries because they wanted to attend a wedding or go on a vacation or things that were valuable to them.
I think the second point to this though is that we might not want to fully believe those results in the following way, our health care systems are not working for our patients and often our patients are used to waiting for many-many weeks and even months and I'm talking the entire United States and so if we are setting those expectations for patients and then we ask them if it's okay, they are probably going to say it's okay. So one thing I'm curious about is if we actually do try to drive down wait times for patients, if the goal post essentially gets moved and people's expectations might actually increase and then we need to follow along with what they really want in terms of their value systems.
Adrienne Boissy: So that leads me ... here I remember Toby Cosgrove, our prior CEO, had heard a story about somebody waiting too long to get care and then immediately rolled out same day access across the enterprise, so it's interesting to imagine that for some people, that may not work and that's also okay with them.
Susannah Rose: Yes.
Adrienne Boissy: In my dreams, we will eliminate the wait one day.
Susannah Rose: Yeah.
Adrienne Boissy: Speaking of eliminating the wait, you've also done some work around virtual care and virtual visits, which we've been talking about, trying to get the patient experience community more engaged in. Talk to me about what it is. There's broad definitions around what virtual care is or distance care. Talk to me about what that means to you and some of the work you've done in that space.
Susannah Rose: Sure, so my research in virtual care is some of the most interesting for me personally-
Adrienne Boissy: See? I told you. She's interested in everything,
Susannah Rose: So I could tell you why it's so interesting in a minute. Let me tell you what it is first. So virtual care is a very wide term that describes many different aspects of essentially the incorporation of technology into health care. So you can even think of the telephone technically as virtual care but I tend to think of it a little bit more high tech in terms of monitoring systems of patients while they're in the hospital, not with people literally right next to them but perhaps downstairs in a basement or in another room, where a lot of people can be monitored at once and we can detect problems more quickly by trained personnel.
Another more obvious example of virtual care is when people use an app on their computer and it's almost like an in person doctor or nurse practitioner visit, where they see their practitioner on the other line, just like using FaceTime or Skype or one of those other mechanisms and you see and talk to the person and get medical care through a virtual health encounter and the opportunity came to me, of researching this, and I thought, you know-
Adrienne Boissy: Let me guess. You took it.
Susannah Rose: Yeah, I did because I thought it was interesting because I thought to myself, who in their right mind would actually think that this virtual care is satisfying or is a good way to get care? I was, to be honest with you, a bit biased against it but that makes for a good researcher, right? Because a good researcher wants to basically interrogate her own ideas and to see what about her own perceptions may be accurate or not. A bad researcher is one who just wants to perpetuate their own view of the world and use data to do that and so we've surveyed hundreds of patients and spoke with them about their virtual encounter visits after they had had one here at the Cleveland Clinic and amazingly, patients loved it and they not only loved it, over half of them said that they liked it better than in person encounters with their providers.
Adrienne Boissy: What?
Susannah Rose: I know. So it was kind of nutty to me and I have to admit, I had never used virtual care before this but after that, I started using it whenever I needed to have access to a medical professional and including for my kids and I have felt that it really, not only transformed my own perception using these data and these analysis, but I hope that other people in other health care systems will see these data and understand that not only could this enhance access to medical care but also might be a preferred method for health care delivery for many patients and one thing that I want to make sure is that a lot of people assume that virtual care is for those early adopters, those young people who are tech savvy and one thing I want to emphasize is that it can also be used for people who have mobility disorders, who live in rural areas, who might not be able to come access care as easily or even for chronic conditions, it might be able to reduce the number of physical visits that people have to have in order to get the best health care that they possibly can.
Adrienne Boissy: And isn't it really the most empathic thing right? Again, it's all about my patients but I imagine my MS patients coming on a rollator or a walker or having to get a bus ride and riding in and sitting in Cleveland traffic, parking, walking through the IC parking lot, you know it probably takes hours for them to coordinate this and so in some sense, it feels to me like the most empathic thing is to truly meet them where they are with this technology and it sounds like you agree.
Susannah Rose: I do agree and I tend to think of this and you and I have talked about this before and how we can provide organizational empathy and empathy, we often think of as two individuals or a group of people together but organizations are groups of people and I think that is crucial to understand then that when people are interacting with the Cleveland Clinic for example, they think of us as people and they think of us as an organization and we can even be thought of either as an organization that is empathetic or we can be thought of as an organization that doesn't care as much and I think that all organizations in health care need to keep this in mind, that access is something that provides an indication of empathy, that an organization cares because they will provide care to you when you need it.
Adrienne Boissy: Now you're talking my language.
Susannah Rose: I had a feeling.
Adrienne Boissy: Just a quick comment about virtual care. Do people really connect over these virtual interfaces? I mean doesn't that just sort of water down the ability to connect as humans? Has that been your experience and if it has or hasn't, why? What makes a difference?
Susannah Rose: So one of the biggest predictors of not having an empathetic experience are the technological issues. So when people have technology and I'm sure you know this, when you get a dropped call or you can't hear people, it disrupts the relationship and the empathetic connection that you can have with people. However, I would say that over 85% of the people in our study said that they felt like they were cared for as a person and that they did have a relationship with that virtual provider on the other side of that connection and also, although providers were not a part of my official research, I have talked to many of them and many of them say that they feel that they can have a better connection with people because they are only focused on that individual at that time on that line and these something sort of very unique and wonderful about empathy that can be provided through technology.
Adrienne Boissy: Yeah, that they can feel it through, no matter what the device. They feel it regardless of the modality trough which they're connecting. All right, well we're close to wrapping up, I wanted to ask you a throw down challenge question which is really around, what do you think we need to do to build better experiences for our patients? Maybe now, but into the future.
Susannah Rose: I think the most important thing is that we need to think about patient experience in terms of personalized patient experience. So organizations have to think about systems. We have to think about efficiencies and we have to think about groups and populations of people and that is a prime directive of many health care organizations. However, we cannot let the person get lost in those efficiencies and we have to not only hear what people need but we have to be able to allow for individual variances and not just allow it for when people tell us something, but we need to be able to anticipate it and in order to anticipate it, we need to engage with people, with our patients, with our family members, and with our professional caregivers. So that way, we know, as an organization, how we can utilize that system, that wonderful system, but to the individual's best interests.
Adrienne Boissy: Love that. Well Susannah, thank you so much for joining us. I really appreciate your time and insights. This concludes Studies in Empathy podcast. You can find additional podcast episodes on our website, my.clevelandclinic.org/podcasts. Subscribe to Studies in Empathy podcast on iTunes, Google Play, SoundCloud, Stitcher, or wherever you get your podcasts. Thank you for listening. Please join us again soon.