Selecting and Using Symptom Trackers – How Are You Feeling?

Video Transcript

Tracey Welson-Rossman: Oh. Hi, good morning everyone. This all just comes on board pretty quickly. My name is Tracey Welson-Rossman. I am in my role today as founder of Journal My Health and my partner in crime for this second Facebook live is Joyce Griggs, founder of the United States of Healthcare. And Joyce, can you introduce our special guest today?

Joyce Griggs: Well, I'm really happy and pleased to introduce to everybody today Dr. Betsy Bennett who is, I can call her a friend, she's also a clinical health psychologist who has done amazing work in helping folks to understand what they can do to improve their healthcare. So, welcome Betsy. Thank you for being here with me.

Tracey: Betsy, if there's, if you'd like to give us a little bit little bit more background about yourself, that would be great.

Betsy Bennett: Yeah, sure. So I'm a clinical health psychologist. And to translate that that just means I'm a clinical psychologist who specializes in sort of emotional and social challenges that people face when they're living with illness. So sometimes that has to do with staying healthy but a lot of times it has to do with, like, how do I handle my relationships when I am sick or maybe having a flare, if I have an autoimmune disease? How do I maximize what I get out of my provider-patient relationship, whether that's an MD or another medical professional. How do I coordinate with my team? My healthcare team. So all of those kinds of, I don't know how you would call them, but not-straight-up health questions but what can we do to kind of manage our minds when we're dealing with illness and manage our relationships?

Tracey: And you know, one of the reasons that Joyce and I wanted to start this you know, series is to bring forward information that's a little bit more patient-centric.

Betsy: Uh-huh.

Tracey: You know, there's so many times, as we all go through our healthcare journeys, that is very focused on the doctor and other parts of the healthcare team. But we forget about ourselves. About the patient being part of this journey and how important they are. And you know, I think that's of course where Joyce is living with United States of Healthcare and she had suggested you coming on and how we can really prep for our doctors appointments and get the most out of it. So I guess the first question now we, you know I'm looking at it from the symptom tracker standpoint or from, you know, what we are creating with Journal My Health  Can you tell us a little bit about, you know, where you think symptom trackers come in, in terms of getting you ready for your doctor's appointment?

Betsy: Yeah, so, you know I think of symptom trackers as basically,  you can do it for four reasons and I'm going to say probably all four of these have to do with, you know, giving your doctor information. But I don't want everyone here to lose track of the fact, no pun intended, I always do that, I don't want, I don't want us to lose sight of the fact that even if and I know we're going to get to this later, even if your doctor's like "Mmm, I can't use this information" or whatever, it can still be so useful to you. So I will tell you that I have tracked my symptoms in the past, never once shared it with my doctor, just because I was using it for me. So that's okay too. There, you know, basically, you know you, you do it for what reason feels right and serves your interests the best. So, kind of, four reasons that you would track symptoms. Number one would be to track severity. So, particularly with things, a lot of symptoms, actually, nausea, pain, lots of these, headaches, for instance, lots of times when we're getting better or we're getting worse it happens in these teeny tiny increments that we can't feel. So you might have a general idea on Sunday that you feel worse than you felt last Sunday, or maybe better but you don't know. Bam, use a symptom tracker. Every day. You can rate that symptom, you can rate it at different times of the day, then you don't have to guess anymore. So a lot of times, for instance, with chronic illnesses where there's not going to be any pill that fixes you, it's a matter of a pill or a regimen that makes you a little bit better, it can really help you appreciate, like, "Wow, I didn't realize it, but like, I was rating fives all last week and, you know, I'm kind of down to three and a half. Not bad." You know, so it helps you track improvement and also, you know, getting worse. Another thing is that it helps you track the temporal nature of your symptoms which is great for planning your life. So let's say that I know that I'm living with chronic pain, but what I might not know is when is it really worse and when is it better in my day? So, if I track my symptoms, say, morning, noon, evening, night, I can start to look at that over time and go, "Wow. You know what? It's not a huge difference but my mornings are noticeably better. So I'm really going to plan important things for my mornings." Another way you can do it, I'm sorry, I feel I'm going on too long, you can tract triggers. So if you have a feeling that, like, "Hmm, maybe wheat really isn't agreeing with me," you can start, you know, tracking your meals and tracking your symptoms, for instance. You could track your sleep in your symptoms. All sorts of things might trip your stress in your symptoms and you might start to see patterns, that again, can help you take back control from this disease or condition that might feel like it's engulfing you. And then the last thing is that, and this is I think particularly important with really difficult drug regimens like a chemotherapy, for instance, or in complex autoimmune disorders, you might just want to get an overall symptom picture. So, for instance, you know, you can be so sick that yesterday you had nausea. Today you have diarrhea. Tomorrow you have headaches. You might forget what you started with, that you started with nausea. So to have that overall symptom picture hugely helpful to be able to walk into your doctor's office and say, "Here is the range of what I'm experiencing and here seems to be the most common of them and so on." And that could be super super helpful for your doctor to know.

Joyce: It’s interesting to unpack a little bit what you were saying about the difference between what your doctor needs and what you need and that we could use a symptom tracker, any kind of tracker really, to even help ourselves. I love that example that you gave about pain, for example, and just find out, oh, now you have information to see that your mornings are measurably better. So maybe if you're going to see a friend you might do that, right? So that your social life also can benefit or family life so that we can decisions about living with our chronic illnesses or just our, you know, acute acute conditions as well based on these, based on these trackers and these data.

Betsy: Yeah, I think it's so important because, and I would say this for myself, too, I don't mean to criticize people out there It's me, too. It's all of us. We all want this cure. But often with chronic disease, there is not a cure. So the next best thing is, you know what, I am going to be my own scientist and I'm going to find out exactly what this disease is doing to me, when it's doing it to me, and I'm going to work around that, and I'm going to get this next best thing to a cure.

Joyce: Right. A question for you. So can we talk a little bit about you might be in a situation where you've decided to use a symptom tracker and your healthcare provider let's just do the you know the non-interested healthcare provider. So my healthcare provider's like, "I'm sorry I can't deal with this this is way too much information." What would you, what would be some tips that we could give folks to do in that situation?

Betsy: Well, the first thing that I would do is set your expectations. So just because your doctor doesn't appear to be interested or isn't interested today and again, I think this would be particularly true for chronic illnesses or autoimmune diseases, doesn't mean that your doctor is going to be disinterested forever. It may be the kind of thing, like, if you're seeing someone, you know, you're relatively stable, for instance, with your lupus and you're seeing a doctor every, you know, quarterly, for instance, it might be a few times that actually your doctor's looking to see some patterns, just over a longer time period. So set the expectations. Second thing is, is that, to the extent that you can and it's also, it's always great to ask for help from a trusted you know, friend or loved one, try to find those patterns yourself. So then in a way you have a bit of an elevator speech ready for your doctor. So what you don't want to do is just be like, "Here doctor," you know, and expect that person to take time to sift through all those numbers. You want to have looked at them first and say things, for instance, like, you know, I'm not sure about this but I kind of feel like when I have dairy I'm experiencing, you know, X symptoms more and I've tracked it here and here's why I see it. I'm going to give this to you and see if, you know, how you feel about it. And then, maybe next time we could talk about, you know, wow dairy is actually an important source of protein for me, but do we think it's a good idea to try to eliminate it? So you're already kind of coming in and you might have a doctor who says, "You know what, I think, I just want to look at this kind of with fresh eyes. Thank you for that." You might have others who say, "Wow, you know, I do have patients who have trouble with dairy. Let's see, keep tracking this." But the fact that you serve it up in a digestible way for your doctor can make a huge difference in how she or he responds to the tracker.

Tracey: So Betsy, I think this is, this is an important point. We're talking about prepping for your doctor's appointment. It's homework, right?

Betsy: Yes. Yes.

Tracey: You know I think that we are conditioned to go into an appointment and they're supposed to be giving us information. But there's work that needs to be done on both sides and we can't expect we have to change our expectation that the doctor knows everything.

Betsy: Mmm-hmm.

Tracey: And is just going to have all the answers. That we have to be active participants. Not only, it's not only just about taking your medication as well as maybe doing if there's physical therapy that you need to do, but it's also really thinking about how your, you know, I love how you're saying, like, you're thoughtfully looking through this information and asking the questions and not just handing them the documents.

Betsy: Right, right.

Tracey: So that was more of a statement than a question, but that's, you know, I think that's something that we should really be talking about and I love how you discuss just how you're prepping that information.

Betsy: Yeah. And I would add to what you're saying about the, that we perhaps go into this default mode of the doctor knows all We also go into a default mode of like, take care of me. I'm sick. Nurture me, give me all the answers. I mean, who wouldn't want that, right? But particularly when you're sick, but it's just not realistic. And so I think it's really important for everyone listening to understand that you might not feel well enough to do that prep work. And in that case, it's so important to have a buddy, an ally, whatever word you want to use, who can help you get that done because it can feel very overwhelming. But if you're really going to be a partner in this relationship with your doctor, you really do, you know, he/she has a job, and you have a job, too.

Joyce: Right.

Tracey: Right.

Joyce: Right. Just two things I just want to clarify. We're talking about doctors a lot, but it could be any healthcare professional and many times you know, we have nurse practitioners who are primary care providers or we're in a situation, as you mentioned PT or something. So we were using the doctor term by default and I'm just saying that for our audience, but it could be any one of your healthcare providers in terms of that preparation, you know, for that meeting, right. Any meeting that we would have with anyone, we prepare. And that's really what we're saying is something we need to take on as a new type of behavior in terms of our interaction, with our, with our, with our healthcare providers. The other thing, maybe you could talk about a little bit is recency, right? So if you were, you know, going, getting ready for an appointment, if we're not tracking, then all we really, as humans and you can speak to this, Betsy, the most recent thing is the thing that we, you know, remember and write down. By tracking, we have the virtue of hindsight. Maybe you could address that a little?

Betsy: That’s a great question. That is that is 110 percent true. And so incredibly important because again if you are being seen for a chronic disease, unless you have some kind of bad flare, you're typically being seen quarterly and you're an established patient by then. So you're not getting some big long appointment typically so absolutely it's so easy to be like, you know, "No doctor. I haven't had any diarrhea,” and then you know if your, you know, your appointment buddy is with you sometimes that person can go,"What are you talking about? Last month you were miserable, you almost called the doctor." "Oh yeah. I forgot." You know, so yeah, absolutely.

Tracey: I think that brings up the question of I love this idea about having a buddy because most likely there is somebody that you're talking to. What we haven't talked about is giving that person the ability to get to your symptom tracker. So sharing, whether it's permissions or them writing down some notes, so that you can put it later, you know, unfortunately from your experience with chemo, I'm sure there were days where you just didn't have the energy to put anything in the tracker. And I was having a conversation with a business friend of mine he was talking to me about a situation with her father-in-law who wouldn't have been able to put that information in a tracker but his caregiver could have. So I think this opens up, and what do you think about having other people having that access?

Betsy: Oh, I think it's great and it's and it's such I think in that it's a nice thing for the caregiver as well because it's a time, you know, and it's a time of day or potentially multiple times a day, depending like we were saying on how you're using your tracker where someone can be sitting with you and saying like, "Okay, you know, how are those mouth sores today? You know, were they, what was the severity?" And to be able to, you know, to go to go through that it's I feel like there's a super practical aspect to it but I also feel like there's an important nurturing and caring aspect to that as well to have a time where you, the patient, get to say, "Yeah, this is exactly how I feel right now." And sometimes although that seems so obvious we don't always take those opportunities with our loved ones.

Tracey: This is another form of self-care that we're not thinking about. I do want to just let the audience know that if they have a question to please type it into the chat. We can, we can answer a question if you have anything. And if not we can, we have a couple more minutes. Joyce, to do you have any other questions?

Joyce: Just one other thing that I wanted to maybe, maybe we could expand on a little bit as that we've been talking a lot about chronic situations and of course that's when one would most often use a symptom tracker. But that question, "How are you feeling?" You know as human beings, our knee-jerk is like, "Oh fine." Even to the healthcare provider and especially if we're not used to feeling sick, we may minimize our symptoms. How important is it to tell the truth of the level of the pain and the persistency of that in terms of how that healthcare provider can then help us. Let's not be polite. Maybe you could talk about that.

Betsy: Yeah, and I don't think that it needs to be impolite. I think that the, what I tell my patients is that there are two kinds of, how are yous. There's the greeting, "How you doing?" And then there's the doctor, "How are you?" So, if you wanted to, or maybe if you were even confused, you could say, "Well, if that's a greeting, I'm great. If you're really asking me, I'm prepared to tell you, you know, how I'm doing. I wasn't sure what you meant." And, and, doctors like that. Specificity is good. So yeah.

Tracey: That is such a great tip. It really is. The doctors that we've talked to as we've been putting together the product, the thing that we keep hearing is that doctors are detectives and they see patterns. So, the information you're giving them allows them to see these patterns. These tips that you've given, Betsy today are just they’re, they seem so simple.

Betsy: I know.

Tracey: But I would say that most of us don't even, aren't practicing this.

Betsy: Right.

Tracey: Though, I guess our, since we're almost out of time, I guess the last question unless Joyce you have anything, is If our audience leaves with one tip for today, from today's discussion, what would you tell them to do to create a new habit?

Betsy: I would say it would be a mindset habit. And that mindset habit would be that my relationship with my provider is much like a business relationship. They have a job and I have a job and I need to probably do some work on what exactly my job is. And a lot of what we talked about today encompasses that, but they're probably some other things, too. So.

Tracey: So I see Tory just added more of a comment than a question, which is, "So much depends, too, on the doctors. I've seen doctors seem more concerned with their clock." And that was another discussion that we had with the doctors is, they have 20 minutes. That's just the way that it is so they're caring. And I think, Tory, what they told us is that they want the patient to be prepared. They want to get as much out of the appointment as possible. So I think that those doctors, it's not just about them watching the clock. And I know this isn't for everyone but they, they're trying to get the most out so that I think preparation allows them to really give them the most out of the time that they have with you.

Betsy: Yeah yeah, absolutely.

Tracey: The doctors we talked to did not like that they only had 20 minutes.

Betsy: Yeah. Exactly. That's right. And I would say, the other thing I tell patients is rehearse. If you only see her doctor four times a year, rehearse. What exactly are your questions? Practice them. Because it's so easy to be in the appointment and you get off on this narrative and you're telling your story because your life kind of sucks because of this illness, you kind of can't do that. Like it's better if you feel you're on a clock.

Tracey: Yeah.

Betsy: Because then you are more efficient with what your message is and what your questions are.

Tracey: Yeah. 

Joyce: And you write them down and hand them to them when you walk into the, when you walk into the exam room after the polite hello. Because then they can help to evaluate what's most important to discuss first in the 20 minutes that you have available. That's a great question and a great tip.

Betsy: Yeah absolutely.

Tracey: And and Betsy I think that I love how you said, treat this like a business. Even though it's personal, it is a business, it's the business of you. We have to reset how we're thinking about this relationship. So we're at time. Betsy, love to have you back because I know that we had some other topics that we were going to, that we discussed in our prep, so hopefully you'll be able to come back. And I hope, audience, that you, you know you got some good tips from this. Please give us some feedback. We'll have this online for review. Joyce, thanks again for introducing us and bringing Betsy to the table. And, you know, we're here, we want to raise awareness that the patient has agency. So let's all work together.

Joyce: Yeah, great. Thank you, Tracey.

Tracey: Thanks everyone.

Betsy: Bye. 

Joyce: Bye. 

Tracey: Bye everyone.