Helping Patients Advocate for Themselves

Jamie DePolo: Hello, thanks for listening. We know that disparities exist in healthcare including in breast cancer outcomes and in general care before someone is diagnosed. Evidence suggests that structural racism, including how doctors talk to their patients and what they talk to them about, may be at the heart of some of these disparities.

Our guest today is Dr. Jennifer Griggs, a breast medical oncologist who is a professor of hematology and oncology and health management and policy at the University of Michigan Medical School and School of Public Health. Much of her research focuses on the quality of cancer care and the effective care on outcomes and disparities in certain populations.

One of Dr. Griggs’s recent studies found that coaching patients to talk to their doctors about their concerns, about their care, and advocate for themselves can offset doctors’ implicit biases and lead to better care for Black patients. Dr. Griggs joins us to talk about the study. Dr. Griggs, welcome to the podcast.

Dr. Jennifer Griggs: Thank you so much.

Jamie DePolo: So, first could you tell us how the idea for this study came about? What was the background?

Dr. Jennifer Griggs: Of course. The underlying goal of the study was to test the hypothesis that it’s not only the physician’s implicit bias, but that those biases are triggered by behaviors that patients have been taught to exhibit in doctor appointments in order to be perceived as likeable or not a difficult patient. We know that, for example, Black patients work much harder to be perceived as positively by their physicians.

I’ll give an example. As a breast oncologist, my Black patients are much more likely to feel they need to dress up and be presentable and be in a much more positive light by the doctors in order to get equivalent care. We haven’t actually shown that dressing up in a particular way changes the care you get, but we know that Black patients work extra hard to make sure they do everything possible to perceive positive…to be perceived positively.

So, the idea for the study came, and these are actually trained actors who played the part of somebody with advanced cancer, and it happened to be lung cancer in this case. We were particularly interested in looking at how pain was managed according to patient behavior. And the thought was that we could train our actors who played patients and were undetected by most doctors. 

So, the physicians gave consent to be in the study and to have an unannounced actor call on them. So, these were unannounced patients played by actors that the doctors knew were coming but they didn’t know the particular patient who it would be. I hope that’s clear.

Jamie DePolo: Yeah. So, the doctors were kind of…they were seeing patients during the day, but they didn’t know which one would be the actor.

Dr. Jennifer Griggs: Exactly. And each physician, and these were primary care doctors and oncologists, saw two patients. And the differences in the patients, the actors, was that one was more typical. I’ll explain that in a moment. And one was more activated. Our thought was that we could activate patients and that might help override some of the disparities we see in pain management between Black and white patients.

The idea came about because we know there are disparities in pain management between Black men in particular and white men, and our goal was to see, could we alter the patient behavior, not as an intervention but more as a test to see if doctors’ implicit biases could be overcome. It’s pretty complicated study. It was complicated to run, and it’s complicated to understand as well. So, let me know if any of that was unclear.

Jamie DePolo: No. That was. So, when you…could you explain though a little bit, and maybe you were going to do this, the difference between an activated patient and I guess a regular patient, if that’s the correct terminology?

Dr. Jennifer Griggs: That’s right. It is. Absolutely. We called it a typical patient because most patients don’t interrupt doctors, don’t re-ask a question if it’s not been answered. In fact, I’m a physician. If I go in and ask my doctor a question, it’s not answered to my satisfaction, I hesitate to ask for more clarification. Here I am a white physician, these are my peers, and if my needs aren’t met in the appointment, I don’t follow up. I’ll go to WebMD or do a PubMed search to get my own questions answered or reach out to a colleague. 

So, I’m a typical patient. And a typical patient won’t, you know, put their list of medications out first. If it’s a patient transferring care, they’ll wait until they’re asked. So, in our activated scenario, both white and Black actors would ask the question again if it wasn’t answered. They’d proactively get out a list of their medications. If the physician was talking and it wasn’t the direction that the patient wanted to go, they would interrupt and say I’m sorry, I wasn’t clear or that’s not quite what I’m asking. So, a really activated patient. 

You know, these are…this would be somebody even more activated than you or I might be in an appointment. And we worked very hard to standardize the questions and behavior of the patient, so that we…what we were trying to do is get rid of person effects. So, any time you do an intervention or a study, people say well that patient didn’t make eye contact. Or that patient, you know, there are other things about that patient other than their race that can different. 

So, it’s not really race, because as you know in the medical profession has a really hard time acknowledging that we have racism in our field. It’s something that we find just so troubling, and we get very defensive about. So, what we wanted to do was get rid of any effect of that particular patient’s behavior. So, our activated patients who would make eye contact is another example.

Jamie DePolo: Okay. And so, in the results, we haven’t gotten there yet but I guess what I’m wondering, I mean, the results the activated patients seemed to get more equitable care. But I’m wondering if there were differences between say an activated Black patient and an activated white patient in the doctor’s perceptions. Because as you talk about you trained them to be activated but not perceived as difficult. But I’m wondering if some of the implicit bias came through. So, if it was a Black activated patient perhaps perceived as difficult?

Dr. Jennifer Griggs: That was something we really worked on calibrating. So, we coached or calibrated the actors not to be confrontational or too activated, right. We didn’t want them to be in charge or to stand up during an appointment because, you know, we didn’t want to play on stereotypes, which would trigger differences in prescribing or conversational behaviors of the clinicians. 

So, yes, it’s very possible that our activated Black patients were perceived differently from our activated white patients. And in fact, what we showed in other publications from this study, is that regardless of activation, Black patients were much less likely to receive appropriate pain management. So, this study looked at ratings of the communication style. It didn’t necessarily look at…so, this is a secondary analysis. 

The primary outcome was actually quality of pain management. And we saw that even regardless of activation or race, that we did see racial differences in pain management. This particular publication that we’re talking about today, this secondary analysis, looked at the quality of the interaction and the fact that an activated Black patient received the same quality of communication regardless of implicit bias of the doctor. We’re interpreting that. 

Obviously one…you know you can’t control for absolutely everything. We’re interpreting that that the implicit bias was overridden by our activated patient, who again were not so activated that we played into stereotypes of an angry or difficult patient, regardless of race. You know, we all have angry white patients. 

So, it was tricky and the implications of this of course are that the burden is on the patient to act within a certain range of acceptable behaviors. We can’t be too forceful. You can’t interrupt too much. And it does concern me that we don’t want the study to be interpreted that we need to narrow even more the behaviors of patients that are deemed acceptable to get good care.

Jamie DePolo: Right. And that sort of brings up another question to my mind. And I’m not saying your study did this, but it suggests that perhaps the burden for having good communication with a doctor falls on the patient. Like the patient has to advocate for themselves. But somebody with cancer, they’re already doing so many things. You know, they’re managing their insurance. They’re managing their payments, their job, childcare potentially. So, while I know this is very interesting, I’m also wondering is this something that patients may be able to do. Like is this putting one more thing on a patient?

Dr. Jennifer Griggs: I do worry about that. Yes. They’re not only managing the other parts of their life, they’re being bombarded with information, some of which is more or less relevant to them. The care coordination itself, and then to sort of have to calibrate your behavior, so that you get good care is…could be…I mean, there are unintended consequences of any study, right? Especially a behavioral study. And almost every tool can be used as a weapon. 

So, the tool would be activated patients, and that could be a weapon in that patients don’t get good care, well it’s their fault. They didn’t advocate properly for themselves. They weren’t well educated about such and such. And I really, I share your concern and as I’ve gotten…you know, we started this study years ago, and as we’ve gotten more and more aware of the structures that are in place, have we now put yet another structure or another message to patients that they need to act a certain way but not so much that way? And in thinking about this deeply, I think the message from this paper and this analysis is that we do treat patients differently based on their behavior and that the burden should not be on the patients. 

If we want to provide equitable care, we need to make not just the physicians, the oncologists, but everybody in the healthcare system, that people are likely to get different care based on their behaviors in the healthcare system. And that what we really need to do is activate clinicians to be more aware of behaviors that might lead us to give poor quality care. 

So, instead of the inverse of…the good news about this study is that patients can be, you know, coached to get better care. What about this? What about physicians need to be aware that their patients are less likely to get good care from the very same doctor, if they don’t make eye contact. And that we need to be heightened in terms of our monitoring our own behavior. Do I give, for example, the same high-quality interaction, information, support, and time in my patient encounters with patients who might be more demure, quieter, less likely to interrupt?

Do I need to monitor how much time I spend with my patients and make sure that’s equitable? Do I need to make sure there’s somebody else monitoring my behavior who could say…just like we have chaperones in the room now, who could say later, you know, I noticed during that conversation the patient didn’t ask a lot of questions. And in fact, the amount of information you gave was less. And did this in a partnering way, right, not do it in an accusatory way. But help us be more curious about our own behaviors in a patient encounter.

Jamie DePolo: Okay. Well, I’m wondering too, one thing we try to do at Breastcancer.org is give people action steps. So, I’m wondering for this study, is there something patients can take away here like if they wanted to be more activated. Even just a couple things, like as you said make eye contact. 

Is that something perhaps somebody who’s going in to see their doctor could consider or going in with a list of questions and sort of saying, you know, here, these are the questions I have. Is that something you see coming out of this? Because it sounds like maybe you wouldn’t be offering this training to patients, or would you? I don’t know.

Dr. Jennifer Griggs: Yeah. So, actually Dr. Epstein, one of the co-authors on this paper did a study called Voices published in the Journal of Clinical Oncology. And what they did in that study was they took real patients, not standardized patients, and coached them to be more active in their -- these were serious illness conversations -- in those conversations. So, we know that this kind of work can be done. 

My bias is that that’s one patient at a time. And I know that my colleagues would agree with me, we need to make systemic changes. So, yes, we can coach patients and I would say to listeners who are interested in, how can I overcome doctor’s biases that of course are implicit because they’re called implicit because the doctor doesn’t know about them. What are things that I can take away from this study to do the best I can and get the best care?

So, I would say yes, your listeners can practice making eye contact in encounters where they don’t have as much power, right. We’re talking about power asymmetry here. So, the physician just by virtue of, it’s their turf, there’s knowledge asymmetry, where they know more than merely all patients that to be aware of the fact that we want to provide good care. 

So, if we’re not meeting your needs and not giving the information support, I would encourage listeners to say, “Thank you. That was very helpful. My question is specifically about X rather than Y.” But doctors don’t like to feel that we’re not trusted. And that’s kind of the double bind isn’t it for patients that don’t trust us. You know, we start to worry when we’re not trusted, and then the whole conversation is about us, our impression management rather than meeting the needs of our patients. So, asking questions. Having a set number of questions, ordered in priority, and then taking time before you leave the doctor’s visit to say, ”Let me just take a moment to take a look at my questions and make sure they were answered.”

That pause is yours. You get to do that. We take a time-out in the operating room. We do a time-out before giving chemo. You get to take a time-out and say, “Thank you doctor, I just want to look at my questions again and make sure they were answered. And if others come up later, how do I get my questions answered between appointments?” So, giving yourself permission to take that time to make sure your needs are met. 

We work for you. It doesn’t always feel that way, but we work for you. And I think physicians would be quite disturbed if they felt that they hadn’t met their patients’ needs. That’s what we love. We love teaching our patients. We love making sure we’ve met their needs, regardless of our priors, our expectations of our patients. We want to give better care. So, calling on your doctor as better angels to meet your needs, that’s where the magic happens.

Jamie DePolo: Okay. Thank you. I have one last question. I’m wondering, and I know your study didn’t involve a patient bringing someone else in with them, but in your opinion or in the other research you’ve done, does that help get better care if there’s another person there to sort of, I guess, be there for moral support for the patient, or maybe remind the patient like, “Oh, hey, you didn’t ask this question.” Has any of your work looked at that? Or do you think that’s a good thing in your experience?

Dr. Jennifer Griggs: I do. And actually, there are lots of reasons why bringing in another person, whether it’s a navigator or a family member; so, it doesn’t have to be somebody in your own circle. It could actually be someone that the system provides, a navigator does a couple things. 

Number one, it helps the physician know that you have support. And that’s really important when we’re starting treatment, especially in the curative setting where we don’t actually know if a given patient needs adjuvant therapy, for example, and you could see how a physician might not give as much treatment or they might pull back on their recommendations if they believe that somebody has less social support. And this again can all be implicit. So, it can help in showing that you have support as a patient. 

The second thing it can do is be a second set of ears. And I will often have the person accompanying my patients bring a notepad or I’ll give them a piece of paper to write down their own questions. And then they can do that pause and say, “Let’s make sure we’ve gone over all the questions that you had,” because as a listener, the patient, your mind is going in a million different directions, things you’re not even sharing with the clinician. 

Like, “How am I going to make work, work? How am I going to take care of the kids? How am I going to get through for the next few months all the things I need to do to take care of myself and my family?” And that other person can say, “Let’s take a look at your questions,” or can be with your permission, you know, given permission to ask questions that were on your list. There’s a lot of work. 

As I’m thinking about this, it’s a lot of work, but this is your life. And any tools, if we can think about these as tools as opposed to commandments, I think that can be really helpful. These are, you know, you have permission to bring somebody in with you and it doesn’t have to be your partner. It can be somebody from your community who can be in that role. Just let them know what it is you need, you know, in that encounter, in that visit. 

You know, we have a hard time as clinicians recognizing our own biases. And again to repeat, I don’t think the burden should be on the patient to overcome that, but being aware that these things can be overcome I think gives us some hope as clinicians, as healthcare systems, and as patients and those who love us as patients. Great, terrific questions and really got me thinking in preparation.

Jamie DePolo: Thank you so much. I really appreciate your insights.

Dr. Jennifer Griggs: Thank you. Thanks for the opportunity.