The Expert Series: Improving health visits for people with lupus

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Lauren 0:04
Welcome to the expert series brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts and lupus to discuss topics to help you live better. Thank you for tuning in to today's episode. My name is Lauren and I'll be your host. Today's episode is a particularly interesting one where we will be discussing implicit bias in health care, and how to improve health care visits for people with lupus. And we are delighted to introduce today's expert Jillian rose. Julian Rose is assistant vice president of community engagement, diversity and research at the Hospital for Special Surgery with a master's in social work a master's in public health and a Doctorate of Education from Columbia University in New York. She has been with the Hospital for Special Surgery since 2005, and is a leader in working to improve upon the inequalities in rheumatology care and orthopedic medicine. Gillian received the Distinguished Educator Award in 2018, from the Association of Rheumatology health professionals, and just received the 40 under 40 in health care for 2021. Today, she will share her knowledge about implicit bias, and how we can work to improve health visits for people with lupus. Thank you, Jillian, for joining us today.

Dr. Jillian Rose 1:23
Oh, thank you so much for having me.

Lauren 1:26
We are so happy to have you here with us today to talk about one of the most important topics for people living with lupus. And that is improving health visits. And we are very thrilled to have you with us during April, which is Minority Health Month. We know that lupus is two to three times more likely and people of color. And I know matter of health care disparities is very important to your life's work. You speak a lot and often about implicit bias in healthcare. So I'm excited today to have you share a little bit about what that means. So can you explain to us what implicit bias is and maybe give us an example of it?

Dr. Jillian Rose 2:03
Absolutely. So I like to explain implicit bias, first of all, in saying that we all have implicit biases. So implicit bias impacts all of us, no one is really exempt from having bias thoughts, behaviors and associations that may influence their interactions with the people that they care for, or that they that they are around. So implicit bias refers to attitudes or stereotypes, right, that affect our understanding actions and decisions in really an unconscious manner. Right. And I want you to think about that work in an unconscious manner. These biases encompasses both favorable or unfavorable assessments. And they're activated involuntarily, without the individual's awareness or intentional control, right. And so as we think about this definition, we sometimes think about, oh, well, you know, someone half my brain, and I'm not under the control of my faculties. So I am perpetuating biases. And so for some people, that sounds ridiculous, because we often think that we are in control of how we behave, our decision making our understanding and our actions. And oftentimes, that's not the case. We have choices, associations we harbor in our unconscious can cause us to have feelings, and attitude about attitudes about other people based on characteristics such as language, gender, race, ethnicity, age or class, right. And research tells us that these associations develop over the course of our lifetime, beginning really from a very early age, through exposure to direct and indirect messages, right. In addition to early life experiences, the media and news programming are often cited as origins of implicit associations. And you know that social media is so dominant in our culture at this time, social media is very dominant, and the implicit associations and decisions that we arrive at. I often tell people that discrimination, racism, sexism, classism, ageism, all those things are real. And we're really not talking specifically about that today. implicit biases can lead to all these things. However, implicit bias is really the concept of our unconscious actions. Right, influenced that influencing our behaviors, thought and action. And I do want to give you an example. So you'll play a little game with me, right? So now, what's two plus two?

Lauren 5:01
Four

Dr. Jillian Rose 5:02
okay, and what's 246 times six?

Lauren 5:06
Oh my goodness. Can I use my calculator? No, I don't know the answer to that right now.

Dr. Jillian Rose 5:13
You can definitely use your calculator. When we think about the concept, and when I asked you about, what's two plus two? Did you have to put any kind of thought process into what that answer was?

Lauren 5:30
No, it's super easy.

Dr. Jillian Rose 5:32
Very easy. It's almost like second nature, right? It's important for us to understand that there's some things that are just hardwired into our brain. And then I asked you what's 234? times six? How did you even think about? Well, how do I get to that answer, and the first thing you said was, let me use my calculator. And it takes a little more effortful thinking, from us to recall that somewhere along our developmental cycle, we learn multiplication. And now because we are a society of convenience, we don't have to do the calculation in our heads or put it down on paper, we could call for our calculator, but it requires some intentional and thoughtful process. Whereas two plus two is like your name. It's hardwired into your psyche. So we talked about this, I wanted to talk about this in terms of thinking about our psychology class 101, right. Where you see that iceberg, and we don't have I like to put that visual up. But when you see that iceberg, and part of the iceberg is above water. But if you look under water, a larger part of that is underwater. So 10% of the iceberg may be above water. And Floyd tells us that the 10% of what we see on that iceberg really represents our conscious mind. Right. And our conscious mind consists of all that we know on the short in our short term memory, what we think what we plan what we analyze, right now, most of what's under the surface 90% of the iceberg is said to be our unconscious mind. We are not readily aware of all of what's there. But it influences our judgments, feelings and behaviors. According to Freud, the unconscious mind is the primary source of human behavior. And so we could have learned behaviors when we were so very young, that are influencing how we act today, and how we respond to situations today, especially when we're in situations where we're hurry, where we don't have enough information, like I asked you two plus two, you didn't have to think about it. That's in your unconscious mind. It's four. But there are certain behaviors and actions that are more methodical, that are more intentional in terms of our own thought process. So when we talk about what's in our unconscious mind, and how our thoughts, actions and the behaviors that are unconscious, that's something that we may have experienced many, many years ago. Right? And so I often ask people, if you have a woman, a man and a child, and you're in a titanic situation, who gets into the life raft first?

Lauren 8:37
Oh, gosh, that's complicated. I would say child, but they would need someone to help them the boat. So I guess, I guess a woman first and then children.

Dr. Jillian Rose 8:46
Right. So So where did you learn that? What was What's your thinking? Where did you learn that?

Lauren 8:53
Oh, gosh. I don't know. That's a great question. I mean, that's, that's what was in the movie, right?

Dr. Jillian Rose 9:00
It wasn't. It wasn't. I just told you that your implicit associations are mostly influenced by the media. Right? And so we often know that, you know, we've heard for years or we've seen it in the movie that women and children first right. Some people in my in when I do this work, they would say, Oh, the the man because he needs to help out, right. But that's like 5% of people. However, people always say, you know, I starred in a movie, I learned always that women and children first that's how we operate. Those are unconscious associations that influence our decision making. Okay. And so that's really the concept of implicit bias.

Lauren 9:52
Wow. So that is kind of, I mean, void my mind of it, when I'm thinking about it. Before going into an interaction with another person, so you know, for this for the sake of this episode, we're talking about health visits, and you get 10 to 15 minutes to have an appointment. And usually we're rushed, you know, as a patient we're trying to figure out, okay, which things we want to prioritize. Oftentimes, we have a list because we don't want to forget the important things. For Julian. Now, I'm thinking about everything below the surface. So I guess that's implicit bias can exist in our health visit. Right? I mean, that's, that's a concern.

Dr. Jillian Rose 10:37
That's definitely your concern. Implicit bias within the context of our health visits has been a concern for a long time. Right. And I tell you, we have been looking at areas of disparities and trying to really understand what impacts and what influences disparities that we see. Back in 2001. Right, the Institute of Medicine came out with this report crossing the quality chasm. And they talked about, you know, they said, Hey, health care, we need you to really look at quality of care be based on issues around efficiency, effectiveness, timeliness, in patient centeredness, because we're seeing disparities, you know, for different populations, especially people of color, are being adversely impacted by almost every disease category, in a negative way, when we compare them to, to their white counterparts. And so this, this report came out back in 2001. And so about several years after they came up with another report, the Institute of Medicine, called an equal treatment, where they saw that even with the same insurance, socioeconomic status, and when comorbidities and stage of presentation and other confounders were controlled for minorities often received lower quality of health care. Right, as we talk about luminance, we are in this context that the Institute of Medicine presented in 2001. And many researchers have presented right. And so look at disproportionately affect people of color, especially women of color. And so when we look at what are what are the issues that are at play, research tells us, and it shows that implicit bias based on race, gender, sexual orientation, weight, insurance, and other group identification, really affect the providers quality of clinical interview, diagnostic decision making, symptom management, treatment recommendations, referral to specialty care, and interpersonal behaviors such as communication, empathy and trust with patients. So we don't have to guess that. There's research that tells us that implicit bias directly influences these things as our patients present to the doctors and their various providers.

Lauren 13:15
Wow. So there is a lot behind it. I mean, and there's a lot of research, like you said, we don't have to guess with this. There's research to it, to show that there is a difference in the interview process diagnostics, for health visits. So when I'm looking at improving visits for people with lupus, and we know that people with lupus, people of color are more more often diagnosed with lupus, we also know that there's a long time to diagnosis for a lot of folks, right? So I'm looking at this thinking how, if we're, if someone is out there trying to get a diagnosis of lupus or someone else out there trying to get the best treatment for lupus, and they know that implicit bias exists, because that's just something exists in everyone. How can a patient come to a healthcare visit? best equipped to make sure that their concerns get heard and to make sure that, you know, they get the care that they need? And is it is it done in the visit? Or is it done elsewhere? In advocating for themselves and where cannot be done?

Dr. Jillian Rose 14:21
Yeah, I mean, it's done in a variety of places, right? So for patients that I often tell our patients, you are the expert on your body. You are the expert in the care culture that you would like to see play out. And so it starts with empowering the patient. Concept of doctor always know best. It's something that we really need to look at. And we need to help in Power our patients and see them as partners in care. We know the many challenges that are involved in caring for a person with lupus getting a diagnosis, because there's so much that's still mystery about this autoimmune illness. So the best person, the best historian, is the patient themselves. The best Intel we're going to get is not always from a laboratory test. So the first thing I empower patients to do is to ensure one, that they are in a relationship with a competent professional, who respects them. Many of my patients, when I asked them, I just completed 15 interviews with women who were diagnosed with lupus, or undifferentiated connective tissue disorder. And when I asked about what's your, what's the one thing that you would like doctors to know? They said, I want doctors to listen to me. Right? I want doctors to listen to me. And I'm, I'm putting together a recording because of those those 15 interviews that I did. When I asked that question 15 times with different voices, it was the same message. So I like to empower patients to ensure that they are in a care relationship, where their providers are listening to them, where they feel hurt. When we look at implicit bias, and its impact on characteristics such as gender, we know that women are often times less likely to be referred for a knee replacement, or given the latest cutting edge biologic drug in care, and that's a part of the research. And oftentimes women, lupus disproportionately affect women who are going to rheumatologist and they don't feel hurt, or they feel dismissed that because their complaint is, you know, it, maybe it's your hormones, or maybe depression, maybe this is related to just mental health. Because lupus isn't visible. And oftentimes we can't point to it. So creating a provider relationship and choosing a provider, who is going to respect your expertise as a patient, and to listen to you is the first step. I often empower patients as well, patients as well, that if that partnership is not there, then it's time to start looking for a second opinion. Because that can be detrimental to your quality of life and your care outcomes. That delay with someone that listening who was not really partnering with you can delay your ability to treat or to get a diagnosis, or to have the appropriate treatments.

Lauren 18:09
That's right. There are so many treatments out there too. So you might be missing out on it. If you're not with the right provider.

Dr. Jillian Rose 18:16
And do you know what? That's such a critical point, I like to say to our patients and our providers, we ask the wrong questions. Often, when we look at the data, we know that the top influenced or patient satisfaction is not time spent with the patients and providers are usually concerned about, I don't have enough time to do my clinical assessment, create a treatment plan, do some teaching about medication or whatever symptoms are coming up and still foster a relationship. But research tells us that the top influencer per patient satisfaction is not the time spent but the empathy shown by the provider. Right. And shared decision making is such a key component of the connection between the doctor and the patient. And so one of the things I really stress to our doctors, is that oftentimes we're asking the wrong question. And the question that we usually are asking is, what's the matter with you? Tell me about your symptoms. Tell me about your manifestations. But we're not asking what matters to you. Because I can give you an example of I can be a patient with lupus and I am having, you know, just excruciating pains in my joints and I'm having a flare. And I can say to you that yes you think that the matter with me is the joint pain and I am not able to Have the best mobility. But if you ask me what matters to me, it matters to me that I don't go back on steroids. It matters to me that I'm still able to have a face though in my treatment plan. And it matters to me that the pain subsides. But I would live with this pain. If I have to go back on steroids because I've had such negative experiences. What matters to you? is a key question because guess what, you can give me the best care in your 15 to 20 minutes, you can prescribe the most expensive biologic drug and in treatment and cutting edge therapy for me. But if it's not valuable to me in terms of agreeing with that treatment plan, if I go back into my environment, and I'm unable to take, you know, a medication that may have me drowsy, or I can't make it to my pharmacy, or you know, I have to be the one who is the the caregiver, and I can't follow up with physical therapy twice a week, or three times a week that care plans falls apart. So our best efforts in those 20 to 25 minutes has failed. It's futile because we haven't engaged the patient voice. And that's how we really create treatment plans that are solid, we need to look at things like social determinants of health, that can drive bias that can drive discrimination in care. And couple that with the clinical treatment plan, because I have to tell you, that sometimes we are treating our patients, we're making assumptions that, okay, you can do physical therapy three times a week, you'll get you're gonna feel much better than to get rid of the pain. But that person doesn't have the 250 subway fee to come back to the hospital three times a week. So we need a treatment plan. However, we made an assumption, in our own bias in our well intentioned mind, of creating this treatment plan, however, we haven't really been thoughtful about what matters to the patient, what's going on for them, and not having 250 is something that maybe we're in a price place of privilege, and we can't even fathom not having $2.50 to take the metro to get to the needed treatment. But that's right.

Lauren 22:37
And also, maybe, you know, I think when you're talking about the social determinants of health, what if you know, someone doesn't have someone that can watch their children so that they can do this care plan? You know, there are so many things like this that can go away. And public health organizations are starting to focus even more on the social determinants of care, meaning, what obstacles that people have in getting the best treatment and, and who is more risk for this. And it excites me to hear this conversation among folks. And, and even with the FDA, and getting the patient voice and developing drugs. And all the work that's being done to understand what is impeding people from the best treatment plan. You're absolutely right. And so glad you brought that up. So then if someone is having obstacles to their best treatment plan, are there any resources that can make this easier for them?

Dr. Jillian Rose 23:37
Absolutely, I really want to start on the Depart of the clinician purse, because oftentimes, we put the onus on patients, and we're not asking critical questions, right. And again, I want to recognize the time constraint with patients with the client. The time that it takes to maybe develop evidence based materials that people think they have to invest in for, you know, doing the right assessment, or the awareness that that asking these questions and doing these assessments and benefit of them really. And so, you know, research tells us that, you know, patients are not usually asked about their social history, to better understand and support the challenges they may face. If you're treating the patient as a whole person, you really want to understand the challenges that they face. And those challenges can be from everything that we talked about the transportation barrier, it could be a financial barrier, it could be a barrier around childcare, right? But they also can be barriers, just related to I'm going to be discriminated against because of the color of my skin. And so although I'm coming into care, I feel like I'm going to be stigmatized. Are you know, I, I've lived through some of these historical ill. And it's not even historical its present, I've lived through the community of color dying disproportionately from COVID, than their white counterparts. We have a history that is it that is flavored by disparities, and inadequate care and outcomes for people of color. And we are in the midst of a pandemic that just demonstrate to us that because of the lack of resources, because of the lack of connection, and because of the lack of inclusiveness, and thoughtfulness about particular communities, they die. And so it's important for us to understand that people are coming in with that fear, and with that lens reticence. And that's a part of the care picture. So I often start with the providers to ask them to in kit, engage the patient, and so forth. In things like and I tell them, you know, when you present a treatment plan, you can say something like, people have different goals and concerns, as you think about your options. What's important to you. Question providers, you know, to ask patients, can you share with me your understanding of actions we have just talked about? You know, what are your concerns as you think about the treatment options I just shared with you asking those questions, you know, do you want to think about this decision with someone else, someone you know, who might be affected by your decision, someone who might help you sort things out. And that's bringing in that caregiver piece. When I love connecting with patients, right? In this way, it opens up a whole new world, that you see them, you see me, you value me, you're asking about my opinion, you're asking about who else is this effect? You're asking about my understanding, it opens up a whole new world that provides a conduit, you know, that allows for trust, and that conduit allows for optimizing your care plan. So I often start with providers and thinking about how can we ask patients appropriate questions so that we can engage them in care? I often tell patients, in turn, to come in with appropriate questions to share your social history. Right. You know, one study showed that 40% of patients reported that family doctors were unaware of their struggle in obtaining enough food to feed themselves or arranging transportation to clinic or paying for medicine. 40% of patients reported that their doctors were just unaware of these issues. To be a partnership. It takes the providers and the patient. And so I do ask patients a lot of times to just come in and share upfront with your doctor about what are your challenges, you can ask all you know what, I'm not able to make it here three days a week, would this work? If I'm able to come twice? All I have to pick up my child? No one, no one's there to pick up my child? Is there a later appointment or earlier appointment that I can have? And so I coach patients on different questions. So don't take the first appointment that's given to you knowing that you're not going to make it back to Martin Luther King said in one of his quotes that I love. And he shed some light on this concept. And I often like to quote him where he said, people fail to get along because they fear each other. They fear each other because they don't know each other. And they don't know each other because they have not communicated with each other. And oftentimes, the disconnect between doctor and patient is that they haven't communicated. They have not communicated. And that's what gives rise to the assumptions to the implicit bias. Oh, hear that patients go again. She's always half an hour late to her appointment on the nose. So you know, you know this, this patient is not. Now this patient is non compliant, and they get that label. So you move on as a doctor, the other the other doctor comes in, this patient is non compliant. Oh, oh, this is gonna be a problem. And that's listed bias plays a role because you've already formed a judgment about this person based on information that was given to you, and oftentimes a person who don't show up or comes late, that's an issue. You already made that judgment just based on that one label. And no one had ever I explored that,

Lauren 30:01
I can see how that can really happen. If you're seeing several doctors within the same within the same facility, because you're trying to find the right match, you're trying to find the one that has opened scheduled for you. And it seems like really, each physician should come to the appointment with a clear set of eyes, like you said, and start the communication, right, I love that you put it back. First for the provider, because it's, you know, if there are obstacles to care, these are not things that the patient has control over. And, you know, they, if they can't make it, they can't make it and being able to see that there are obstacles that are out there, being able to have the provider, ask those questions, to start that trusting relationship. I love that you brought that up, and then encouraging patients to seek that out. So it's kind of a two way, two way relationship. And, like you said, shared decision making, that's really going to be the best outcome for for people living with lupus and getting the best out of their visit. I think it's going to be so inspiring for folks listening, because, you know, sometimes Julian, you know, maybe treatments can be two times a week or, you know, maybe they could have a different schedule. Just got to ask

Dr. Jillian Rose 31:15
we are living in the world of telehealth, right. So we know that implicit bias, you know, we often call our blind spot, providers are stressed, they have time pressures, there's poor communication, there's miscommunication. And we know that patients are coming in with their own stress level, their own mistrust their own communication issues and stigmas, you know, because of their experiences. And so providers are also coming in with a set of experiences and biases and prejudice. And patients are coming in the same way. You know, maybe they've been treated and marginalized at another place, maybe they've been marginalized in the same hospital with another provider, right. And so it's important for us to understand that these two individuals are colliding. And there needs to be that communication and opportunity for the provider and the patient to kind of know each other, and to be reinvested in a trusting relationship, where they're not just seen as whatever is in their chart, note, whatever labels have been used before. But they're, they're really seen as individuals. So shared decision making is one of the tools that's often used to create that trust, but to also optimize the relationships so that the treatment plan can be discussed. And thereby there's buy in from the provider and the patient. And so that's so critically important. I often tell providers that patients that we are in a pandemic, issues around transportation, we have telehealth. And so that's one of the gems that I give to patients as well. Okay, transportation is a barrier. But what are some of your appointments? That can happen right in the comfort of your own home? And how can we optimize that so you don't have to worry about that 250 On the train for these three appointments, just right, maybe we can look at your lab results and discuss your lab results via telehealth and we can optimize that platform. You know, so you don't need to come in, you don't have to rush to pick up your children. You don't have to rush in and kind of miss work, right. So that's one of the pieces that I asked patients, I said, you can negotiate that with your doctor, you can negotiate that with your clinician. And I also say for patients, there is sometimes a relationship is not working out. And we need to acknowledge that we need to not blame ourselves. But we also need to say it's just relationships, the relationship, providing what I need. And sometimes it's providing the care that you need. And your treatment plan is working. But you're you go to your appointments, you feel invisible, you feel like you're not heard, you feel like you're treated with disrespect, you feel like you're treated less than that's not a great combination for your mental health either. So yeah, I often tell patients look at what's important to you, in terms of creating a relationship, and then the care that you're getting and make some decisions around who you want to be and how you want to be with your provider. Lupus is a chronic illness. And so you're going to be with this person, you know, hopefully for quite some time, and they're going to be influencing the trajectory of your care. So you want to be able to build that trust and not feel that you're being stigmatized or marginalized, or you're not being respected, even though the care might be great and for other patients, there's subpar care. You know, people are not presenting the options to them, whether they feel like, oh, you know, this person is not going to show up, you know, I had a patient who was excellent. And she, you know, she was great. And we put her on a biologic. And all of a sudden, you know, the doctor was complaining that we weren't seeing kind of the medication in her in her show up in her labs. And, you know, we just didn't know why. But she was adherent to every appointment, and she was very, on top of her coping and caring for her illness. And, you know, one day, I sat down with her, and I said, you know, tell me a little bit about how the new medication is going. And she said, you know, well, you know, to be honest with you, I lost my home two months ago, and I haven't even taken the medication, because it needs to be refrigerated. And I'm at the mercy of, you know, friends and some families and, and I've been couch surfing, because I don't have a home. And, and, you know, I said, you know, have you discussed, this was your doctor, and she said, you know, no one ever asked me, you know, she said, Do I look like I'm homeless? Right. And so, in that moment, again, to reiterate the point of, it's important for us to ask the critical questions that will allow us to know our patient's circumstances, because we were sending and she was being prescribed a very expensive biologic drug that was just going to waste, because she did not have a consistent home or refrigerator to put the medication in. And that issue was easily solved. She was diligent about attending her appointments. So we said, you know, you can come in weekly, we can keep the medication here, and you can come in weekly, and we'll administer it for you. Wow. And she was delighted at that plan, as she worked out and worked on her housing issues. So it's important to ask the questions, so that we can learn about the challenges that our patients face. And for patients, it's important to disclose what challenges you may face. So that together in that partnership that we talked about, we can come up with the best solutions, we are often making judgments and decisions about who people are by how they look, we think people situations are not changing. And we're often dead wrong about that, especially in COVID. So many people have lost their insurance. So many people have lost their homes. So many people have taken taken in other family members, so many people have lost their jobs and can't put food on the table. And so if we operate on the implicit assumptions that, oh, this patient had Gary insurance, they are forever going to have great insurance. And this is how I'm going to deal with them or treat them. I don't need to ask all these other psychosocial questions or explore social determinants of health. Meanwhile, your patient is drowning. And so it's important not to just think about implicit bias. In terms of kind of some of the some of the characteristics like gender or race, it's important to think about implicit bias in the context of the judgments we make about people. What's your socio economic status? Who was in poverty, who can afford food, you know, for, for right now, especially in this pandemic, it has revealed to us that exploring and assessing and asking the right question is so critical, because this pandemic has touched everyone in a different way. And our assumptions are not going to move us to the place where we can provide the best care for our patients.

Lauren 39:03
That's so powerful. I love the emphasis on communicating well, and it being both from the provider and the patient. Jillian, thank you so much for your time today. This has really been an excellent talk. And I'm still very excited that we have the chance to bring up this important topic. I hope it helps us to think about health visit, what may get in the way of their success and how to improve our time spent with our physicians and providers how to improve your time spent with patients, and how we can hold people accountable for the care that they're given. For those of you listening in, you can find more information about lupus and preparing for doctor's visits on the National Resource Center on lupus by visiting lupus.org forward slash resources. For the latest information on lupus and COVID-19. Please visit lupus.org forward slash Coronavirus. So listen to additional episodes the expert series you can visit us@lupus.org forward slash the expert series where you can also subscribe to get alerts when the podcasts are released. And if you'd like to speak with one of our health education specialists, you can go to lupus.org forward slash health educator or call. One 805 58011 extension 136. And finally, to connect with others with lupus from all over the world, invite you to check out our online support community lupus connect where you can talk with others. Find emotional support, and discuss practical insights for coping with the daily challenges of lupus. You can find a community@lupus.org forward slash resources forward slash the best Connect. Thank you and have a wonderful day

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