Myriad Live - Let's Talk Patient Friendly Language for Precision Medicine

Myriad Live episodes are recordings of an open-forum webinar hosted by Dr. Thomas Slavin. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, visit https://myriad.com/live/ for a list of dates, times, and subjects.

Transcript

0:00:12.8 Dr. Thomas Slavin: Welcome. This episode of Inside The Genome is a recent recording on Myriad Oncology Live, a webinar hosted by me, Dr. Thomas Slavin, Chief Medical Officer for Myriad Genetics. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, please visit Myriad Live for a list of dates, times and subjects. I look forward to exploring the world of genetics with you all.

0:00:43.7 DS: Hello everyone. Welcome to Myriad Live. Sorry, I'm just change around some screens. I hope everyone's having a great day. I actually did not cut off the music, it was about to go into an ad. So it's good. So listen, Valentine's Day jazz music, for those that caught a little bit of it.

0:01:04.4 DS: But we have an exciting Myriad Live today. We're joined by a special guest, Leigha Senta-Jamieson. And I will introduce her formally in a second. A little housekeeping to start as always. If you're new here, and it looks like we have a good audience, but if you're new here, this is a webinar series from our chief medical officer at Myriad Genetics, try to do these fairly unbranded though, they're really just for education for you all.

0:01:37.6 DS: That's why we're here, to have just a forum where it's just easy discussion directly with leadership, and Myriad wanted a educational platform that we can talk about exciting hot topics in cancer genetics and beyond. So originally, this started out as very focused on cancer genetics, and now we're really talking about things well beyond cancer genetics, diving into the general state of genomics in healthcare as a whole.

0:02:10.2 DS: We are in the midst of... I'm assuming everyone can see this, but... Can people see the calendar? 

0:02:19.2 Lauren: Yeah.

0:02:20.2 DS: Okay, yes, great. So we today are talking about patient-friendly language for precision medicine, and Leigha has a paper we'll be really discussing. She just put the paper in the chat, so for those that have the chat pulled up, you'll see the reference and then you can follow along.

0:02:40.5 DS: And we have some other exciting talks coming up, we actually are I think booked into April at this point, but we don't have the March schedule up. But February, we're gonna be talking about advancements in neurology. There's been a lot going on in that space. Genomics has definitely become more commonplace in taking care of neurology patients, particularly those with prostate cancer.

0:03:04.5 DS: And then we're gonna be talking about the end of February disparities in cancer genetic testing across the population, so that's gonna be another good one. We'll have special guests actually for both of those. As always we do record these. We do encourage folks to unmute themselves, ask whatever questions on their mind, we like these to be interactive. And if you don't feel comfortable unmuting yourself, completely fine, just put your message in the chat. Usually Shelly is helping with the chat.

0:03:40.8 DS: Lauren, I don't know if you're able to help with the chat today? 

0:03:43.9 Lauren: I am stepping timing in for Shelly today.

0:03:45.8 DS: Yeah, I thought you were, yeah. Didn't wanna make assumptions. But yes, thank you. Yeah, so you can either put your question in the chat and we'll make sure we field it, or you could send it directly to Lauren and she will make sure it gets read and answered. And we put all the content up on the podcast, so Inside The Genome is one of the only genomics in healthcare podcasts up, and this is a snapshot of it.

0:04:15.8 DS: We have a ton of stuff up here, and we put anything with Myriad Live is from these webinars, and anything that does not say "Myriad Live" is usually just me sitting down with one person going through a specific topic. So I'm gonna stop sharing really quick. Moving some monitors around.

0:04:41.8 DS: But thank you, Leigha, for coming on. So Leigha is a genetic counselor. She is amazing. She with the cancer control arm of the Ohio State University, the Raymond James Comprehensive Cancer Center. I don't know, Leigha, if you wanna unmute yourself and discuss a little bit more about your role and how you got into the field of genetics? 

0:05:12.1 Leigha Senta-Jamieson: Thanks for having me. And I will say, in setting up for this, I was envisioning the podcast, so I didn't bring slides, but I promise not to bore everybody to death without those. So it's good to see so many familiar names. I even see some former students of mine on here, so hello to everyone.

0:05:35.1 LS: But I've been in cancer genetics a really long time, and in my role it's kind of evolved over the years, but I do still see patients a couple of days a week. Generally speaking, I see gynecologic oncology patients now, but like all of you, have seen all cancer genetics patients over the years.

0:05:57.9 LS: But a fair amount of my effort is dedicated to research, and so the paper I'll be discussing today touches on the beginning pieces of some of our current work, and from a genetic counseling perspective, it's really interesting to kind of investigate how patients are receiving the information that we and our oncology colleagues are providing to them around tumor genomic testing, and sometimes it's a difficult distinction to make, and I think that came out in our work too.

0:06:32.2 DS: Yeah, and Leigha, I will say from my travels, you're a very unique individual. At a very early stage, you completely embraced the tumor world. [chuckle] And I think everyone is trying to figure out where they fit into the whole tumor space, and you've done a fantastic job. So maybe before we even get in the paper, if you could just give people a little of that back story? 

0:06:58.3 DS: 'Cause I think it's so important to the contextual understanding of then how you started working towards even some of the things we'll talk about in the paper.

0:07:08.0 LS: Yeah, sure. So you're right, in that I do interface a lot with the tumor testing in addition to the germline testing, but I think it largely just sort of organically evolved out of my work in the ovarian cancer patient population, because it became so important several years back the somatic test results.

0:07:32.5 LS: And we found in our workflow, so I support a fairly large practice of gynecologic oncologists, and we just know that if somebody doesn't take ownership of it, it will slip through the cracks. And so it was our goal to have both germline and somatic data for the ovarian cancer patients.

0:07:52.5 LS: And one way to ensure that that was happening, because we've been a pretty good job with the germline testing, was for me to kind of take the lead on the somatic testing part of it too. And I actually found it was a nice sort of change up in the genetic counseling process, but it also was very easy.

0:08:13.9 LS: It doesn't add a huge layer of complexity, and I find that describing somatic testing when you're already talking about germline testing is actually pretty easy, and I get the impression that the patients I'm speaking with are following along at least, not that I've studied them specifically. So it really was born out of a process improvement plan for us. If they're seeing me and they haven't had somatic testing, I just put it into action.

0:08:46.8 LS: But because of that, I've learned a lot and have talked to other practices about how to incorporate somatic testing, and with the genetic counseling or at some point downstream or upfront, there are a lot of ways to do it, but I think because we've been talking about it for a number of years in ovarian cancer, that's kind of how I ended up where I am.

0:09:11.7 DS: Yes. No, sorry. So any questions, just before we even dive into things? I don't know if anyone else wants to share how they've been handling the tumor somatic world? If not, that is fine. So let's talk about the paper a little bit. I put the reference in the chat. It was... You had posted it when we came on, I don't know if... Maybe for those joining now, they might not be able to see the original post prior to joining.

0:09:52.6 DS: So the paper is you're the first author in this, Patient Understanding of Tumor Genomic Testing: A Quality Improvement Effort. And this was in JC Oncology Practice just recently, and I think it was e-pubbed in... Or is it actually... Yeah, so September 2022. So yeah, if you wanna give a little background of what even prompted you to look into this and what you found? 

0:10:22.5 LS: Yeah, so this has been an interesting evolution too. So what got us working on this path that eventually led to the paper, and I'll explain our findings and data, but colleagues of mine in medical oncology had done a project in metastatic breast cancer patients who had tumor genomic testing, many years... Well, a relative, many years ago, around their attitudes related to that tumor genomic testing.

0:10:57.5 LS: And so the primary outcome was related to knowledge, genetics knowledge, and I wasn't involved in that particular project execution, but when they were analyzing data, they came to me because while it wasn't their primary outcome, one of the things that they noticed, there was a significant decrease in trust in provider, which is a validated scale that's used in some other studies.

0:11:24.8 LS: But in patients who underwent tumor genomic testing and their therapy wasn't changed, they noticed a significant decrease in the trust in providers, so the patients trusted their provider less. And so we were talking about this and kind of hypothesizing why we thought that that might be the case, and it warrants further exploration for sure, but that's what started our collaboration, my collaboration with medical oncology to try to investigate this further.

0:11:58.8 LS: But we were sort of anticipating that original study didn't stratify by provider, and I can imagine, just knowing my colleagues, that it's possible that there's this sort of inflation of hope in this personalized medicine. You know, your oncologist is talking to you about this tumor genomic testing and you're really excited to get something that's gonna target your cancer.

0:12:23.4 LS: And then since it doesn't actually involve a change for the majority of patients, there's this immediate period of let down. And why that actually translates to a decrease in trust, I'm not sure, but you can imagine this kind of build up and then let down over the course of time. And there wasn't a... So this was sort of immediately after receiving test results and they didn't do a longer point follow-up.

0:12:52.9 LS: So that's what started this whole discussion around what information are oncologists providing at the time of tumor genomic testing, because actually trust in provider has been attached to long-term outcomes. So when you have a better provider-patient alliance, that leads to more adherence in attending your follow-up appointments and just better quality of life.

0:13:15.4 LS: So we started talking about how we might investigate this further so that we can minimize those peaks and valleys that we may be causing as the provider team, and one thing we thought about was kind of standardizing the message. So that's where this whole idea came from. And so the first thing we did was investigate our own medical oncology, so we kind of did a quality assurance initiative project.

0:13:55.0 LS: So we surveyed our medical oncologists. We had a pretty good response rate. It was a little over 70%, I think. So yeah, 40 medical oncologists responded, just regarding their current practice around tumor genomic testing. Now, one thing to keep in mind about this is the medical oncologists were from various specialties, so some of them do tumor genomic testing all of the time, others have been maybe were just starting to get into tumor testing.

0:14:26.4 LS: But we asked pretty basic questions like, "What of these topics are you covering when you talk to patients? Do you have time to have discussions about these things?" And we pulled the list from the recommendations that are out there in the literature, so ASCO has a policy statement, for instance, around what things should be discussed around tumor genomic testing when you're gonna order it.

0:14:51.7 LS: We found some interesting data, and of course it's a small in and just representative of our specific institution, but the overall theme was really congruent with what you see in the literature, which is just that it's really variable. Everybody's discussing things that... Different frequencies and with different emphasis.

0:15:19.6 LS: And one of the things that is really not discussed very often is the potential for incidental germline findings when doing tumor genomic testing. It seemed like providers might be emphasizing the possible benefits of testing more than the possible limitations. And so, again, just reinforcing our plan to try to standardize all of that.

0:15:43.2 LS: And the other recurring theme was that people don't have time to check all of these boxes that some of the literature says that there should be a really in-depth discussion about this ahead of therapeutic decision-making kinds of tests.

0:16:02.8 LS: So we surveyed our providers and then kind of arrived at the idea that we might succeed in having a standardized message if we made a video message. And that, again, some of you may have heard me speak about before, we've done this in cascade testing for germline testing, so we have experienced in developing a video message.

0:16:30.7 LS: We usually use animation, so not a talking head like you see right now. [chuckle] So it's an animated video short that can be viewed on a phone or an iPad, to kind of check more of these boxes, so we're saving provider time. We're taking out the subjective emotion of it all, and then standardizing it across patients.

0:16:58.0 LS: But before we went to the video developers and said, "Okay, here's what we want it to include," we wanted to talk to patients. So the second component of the project development is essentially that we held focus groups for patients with, we had two patient populations, metastatic breast cancer patients, and metastatic lung cancer patients.

0:17:25.2 LS: I don't need to tell the group here, those two patient populations usually have very different perspectives. Tumor genomic testing, the utility of it is quite different in both of those groups, and in the breast cancer population in particular, some of them, although we didn't ascertain this for enrollment, but several of them had also undergone your germline testing.

0:17:51.2 LS: We tried to make sure that we had representation from various demographic backgrounds and also payer mixes, partly because some of what comes up in... Well, in Ohio, at least, is that everybody's worried about cost. So we held these focus groups, use semi-structured interviews and our CCC research team helped conduct those interviews.

0:18:26.2 LS: So it wasn't biased by the patients being patients of mine or one of my medical oncology colleagues, it was a completely different third party interviewing them, to just try to elucidate some common themes that we could try to make sure that we addressed in the video that we plan to make.

0:18:49.8 LS: I listened in on the interviews and they were so interesting. In particular, around the idea that it was... Patients had a very hard time, so we kind of asked them just in theory what they thought about tumor genomic testing, whether or not it impacted them, but then we also asked them about germline testing too, and even for patients who had both kinds of tests, they really got the two confused.

0:19:24.4 LS: I think that was potentially allowed to show through because they had someone who was not in genetics, not in oncology, not a doctor, asking the questions, and I could begin to see that even the terminology that we use, it doesn't really lend itself to easy understanding sometimes, try as we might.

0:19:50.9 LS: But I also think that the perspectives they gave, some people would say, "Yeah, my doctor just said he was sending something off and I don't know what happened with it." Or sometimes the primary thing that a person remembered was getting a bill or filling out the financial assistance paperwork. Or getting the explanation of benefits that they thought was the bill. So again, the things that I think sometimes we wish weren't the focus, sometimes still are the focus months or years after the fact.

0:20:24.1 Lauren: Yeah, and even the confusion there. As you point out, genetic testing is seen as kind of almost a basket, so people get out of even potentially COVID testing. Probably not. But I'm getting that tumor is one thing, but then say you got no bill on the tumor bill on germline, they might all see that as interchangeable? 

0:20:44.8 LS: Absolutely, yeah. One of the other things, so we kind of asked, participants were asked is the idea of potentially finding something hereditary by doing tumor testing was raised, and no one recalled that. If they had germline testing, they remember that, but if they did it, that was not part of this discussion generally. And when we...

0:21:17.7 LS: So the interviewer would then present as an area or just kind of explaining how that sometimes happens, and the reactions were across the board different. Sometimes participants were like, "Wow, that's really awesome. I can't believe that could happen. I'm so glad I had that done." And then others were like, "Whoa, whoa, whoa. That's pretty scary."

0:21:40.1 LS: And so again, this is retrospective, so we didn't record their discussions with their oncologist, I don't really know what actually was talked about, but what results in the end is that these are items that are not sticking with the patients if they are being discussed, and so just a need for a clear and consistent message, I think was our overwhelming takeaway.

0:22:10.9 Lauren: And Leigha, can I just ask a really quick question? This is Lauren. I'm reading from the chat for Rita, "Did the TGT testing for breast patients also include onco type?" I feel like I know the answer to this, but I wanna allow you to elaborate.

0:22:25.1 LS: Yeah, I mean it could have. It probably did. We didn't... In this particular scenario, we actually... It was not a condition of enrolling in the focus group. So we had participants who did have all of the above, all the above testing, and participants who didn't. And so for the patients who didn't have tumor genomic testing, we wanted their perspective too, just kind of as a blank slate, like, "What information do you think would be important to share?"

0:23:02.4 LS: So we kind of had all of the above. I'm sure some of them had onco type and that muddies the waters further, but we didn't pull that data point.

0:23:11.2 Lauren: Okay, yeah, so in the recruitment, TGT is not defined as one particular tumor molecular profiling, it could be an array. Or none of those, depending on...

0:23:24.5 LS: Yeah, yeah.

0:23:25.7 Lauren: Okay. Thank you.

0:23:29.9 LS: Any other questions? 

0:23:32.1 Lauren: AI know there was the mention of a video, I don't know if you wanna dive into that a little bit? 

0:23:38.5 LS: Yeah, sure. So we took all of the preliminary data and worked with the same video production company that I had worked with previously for the cascade testing video. Some of the people on our collaboration team are from the School of... Shelly Hovick is one of my frequent collaborators, she's from the School of Communications at Ohio State actually, and has done her work in health and risk communication in mostly cancer patients.

0:24:13.1 LS: So she really helps craft the messaging, and we worked with others in the cancer control group too. But essentially, we developed three videos that are almost identical to each other with a tiny exception. So all three videos are about two and a half minutes in length each, so we wanted something that could be presented in clinic and not jam things up.

0:24:42.0 LS: So there were about two and a half minutes in length, and we have a breast-specific video, a lung-specific video, and then a tumor agnostic video. And all of the information is essentially the same, except for in the breast and lung video, we do give, I think it's one sentence different, that states the likelihood that a tumor genomic test is going to impact a breast cancer patient's therapeutic decision or a lung cancer patient's therapeutic decision, for instance. And in the tumor agnostic, we don't give that specific data point.

0:25:24.9 LS: So the rest of the script is entirely the same. We were pretty careful... Within the budget that we had, we were pretty careful to try to be representative, again, these are cartoon drawings, but to not be overly gendered or overly racial specific with any of the characters that are presented. And there's a physician, a laboratory scientist, a patient, a caregiver, a nurse or assistant type character.

0:26:02.3 LS: But you can see in the paper, I won't go through all of it, where we took the various published recommendations and kind of check the boxes about whether or not the video addresses that specific topic that in the literature it says should be discussed. And so we felt fairly good about mostly checking the boxes in two and a half minutes.

0:26:26.9 LS: So we received an R21 to develop these videos and study them. So we're almost finished with the R21. I think we've enrolled 100 individuals in lung, breast, tumor agnostic, and we're studying various outcomes related to trust, understanding. And then our plan, we also have submitted in our one that'll be reviewed next month, but our plan then would be to extend it to more sites with different demographic populations and do a randomized study then. Right now this one is not randomized.

0:27:12.9 LS: We did just have the videos, we're in process of translating them into Spanish language as well. So for that, we'll have more data too hopefully, if we're funded.

0:27:23.4 Lauren: Yeah, no, that's great. And hey, congrats on the R21, those are not easy to get.

0:27:30.4 LS: No, no it's not. [chuckle]

0:27:33.5 DS: Lauren, I saw you put something in the chat? 

0:27:34.8 Lauren: It was the table that Leigha was talking about all the requirements, to see if the video met it, and so I thought it would be interesting just to see what those recommendations looked like. I actually was gonna ask if the video is in different languages, but you answered that already, so I think that's great. Are there other languages that you're looking at based on the population set you're seeing in clinic? 

0:28:00.0 LS: We would love to have it translated into more. We're in the middle of Ohio, and I will say that our diversity is lacking for sure. And it is... We just don't have the funds to have it translated and at the ready for all possible languages, at least at this point. But it requires two things usually, so there's the script translation and the words that show on the screen sometimes are translated.

0:28:40.2 LS: And then we generally like to try to have professional voiceover, and so we've had to actually pay extra to get people to work with our videographers who are native Spanish speakers, to get the translation complete.

0:28:55.5 DS: That's great. Are you able to share these videos once the project's done and everything, is that the goal? Or are you gonna keep this within Ohio State's walls? 

0:29:07.4 LS: Oh, probably not. That's not our vision for sure. Our cascade testing video is out there in various locations. We're still studying it too, but it's around. And we envision that for this one too, once we're finished studying it. We've already identified... So our goal was that when we complete the R21, based on feedback from those participants, it's likely that we'll kind of go back and make some adjustments. The artwork and things for this particular video could be jazzed up a little bit, so it's certainly not in its final form.

0:29:46.5 DS: If you have a version and you wanna show it, we could even show it here. I know I'm putting you on the spot.

0:29:51.0 LS: Yeah.

[laughter]

0:29:54.3 DS: 'Cause they're only two minutes in length or so. It might be interesting for the audience to see. And how did you even go about the language? That's a big question, and unfortunately Shelly Cummings who has a big interest in this, wasn't able to join today. [chuckle] But it's very confusing. You have, as we've talked about, germline... It's confusing to half the people on this call too.

0:30:18.1 DS: Germline genetics, when something's in the blood, are you talking about hereditary or you're talking about circulating tumor? Liquid biopsies have really made counseling even more challenging in that sense. Tumor tissue by itself was already complex and differentiating that from blood and saliva hereditary testing, and anything about hereditary cancer mutations.

0:30:40.8 DS: And we don't even have great nomenclature for all these things among sometimes ourselves. How did you go about finding that patient-friendly spin on all the language? 

0:30:52.4 LS: Yeah, I don't know that we've totally succeeded, to be honest. So we just decided to be consistent and so we refer to the thematic testing as "tumor genomic testing" in the video, over and over and over again. And I don't know that that's the agreed upon language, I don't know if there is truly agreed upon language to begin with.

0:31:21.8 LS: But I think it's really, really difficult, but we felt that in talking with the patients, we had to keep the word "tumor" in there as the distinguisher. If we talked about thematic testing, forget it. That didn't resonate at all. And the main way that we could distinguish the two with keeping tumor in there, our video does introduce the possibility of the idea of liquid biopsy too, particularly because our lung oncologist said, "Oh, I do this all the time. This needs to be a part of the video."

0:32:06.8 LS: And so yeah, I'm interested to see what our data show about the language that we use, but just personally, outside of this study, I do think that sometimes those of us that live and breathe genetics all the time, make it way more complicated than our patients need us to make it.

0:32:26.4 LS: And I know, I think maybe Shelly was planning to talk about some of the white paper that some of the advocacy groups put together, even saying that it's okay to say "mutation" [chuckle] instead of "pathogenic variant". And I think we need to listen. We need to listen hard to them. And it's one thing to see something on a report, and yes it's nice to mirror that language, but our patients are confused.

0:32:56.0 Lauren: I think to your point, Leigha, there was a really good question comment in the chat from Mariana, just asking if, "In addition to interviews with families, did you also include the families in the video development and scripting process? And are there opportunities for families to be involved in the product development?"

0:33:18.7 LS: So our focus group participants were offered the opportunity, so they were engaged pre-video. And then they were offered the opportunity to give feedback on the video itself. So we, with the very early prototypes reached out to them, just for some initial feedback. They all were pretty favorable, all of their feedback was at that kind of middle stage. We didn't have the budget to do substantial edits right then, we have to wait until the R21 is finished, so we will re-engage them at that time.

0:34:02.8 LS: The question about involving families, family members of the patient is a good one. I think I need to think about that a little more. This is primarily about the tumor genomic testing, although we introduced the idea of a potential incidental finding. So that's maybe a good recommendation. It's in there as a, "Just know that this is a possibility and you might need some additional testing," but yeah, that's a good one.

0:34:32.9 DS: And there's a question by Robin too about, "Did you assess post-test communication? That it could play a role in a patient's disappointment in testing, obviously increase distrust in a provider of things aren't being communicated well?"

0:34:50.6 LS: For sure, yeah. In that original study, no, because this was sort of a side finding, it wasn't a primary outcome, so it wasn't something we specifically assessed. In the current study, there is a post tumor genomic result disclosure assessment, so they do pre-video, post-video and then post-result, and so part of the assessment of that communication is in that third, that T3 survey.

0:35:29.7 DS: Yeah, that's great. I just wanna pause here and if anyone wants to unmute themselves. I'm just curious how people are talking about tumor testing with their patients? Leigha laid out she likes to use the word "tumor". How are people having these discussions, just for shared learning? 

[pause]

0:35:54.3 DS: I'll give it an awkward silence, see if someone chimes in. [chuckle]

0:36:00.4 LS: I can call on the people I know. [chuckle] I won't give my prior students PTSD for calling on them unexpectedly.

0:36:07.9 DS: I mean challenges that people see... Have seen in clinic too. I mean, anything really.

0:36:12.8 Lauren: Leigha said similar describe testing in tumor or their cancer.

0:36:25.2 Speaker 4: I think... Hi, TJ. I think that it depends on the context and sort of when I'm seeing the patient. Is it that testing, the sort of tumor genomic testing has already been ordered? Or is it something where we have our own Precision Medicine program here where we're the ones that are facilitating the testing under a research basis in how you describe it.

0:36:46.8 S4: But I generally try to keep it simple, but say there are these two different types of tests and they're sort of intended purpose primarily are for different things. The one that I'm mostly talking about is to see if you were born with a change that could impact your care or screening or for your family.

0:37:07.0 S4: Whereas this other testing is done on the genetics of your tumor or cancer to see if that might help your oncologist figure out if there are other treatments that may be available for you. But I find that it's really context-dependent, but it's usually, yeah, I've run into the same things that I think a lot of people, or Leigha like you already described, where it's sort of like they're calling us about a bill. [chuckle] Or it's even Billing coming to us about a bill and we're like, "We're not the ones that ordered that."

0:37:38.0 S4: Or they're like, "Oh, I already had genetic testing, and it was an onco type or a other form of TGT, or foundation testing," or something along those lines, and sort of describing, "Well, this is what this is, its intended purpose is. And here's why, what I'm talking about is a little different and how it could still be helpful for you."

0:38:01.0 S4: But I think it's a little context-dependent sometimes, but I do run into and I do question, that's why I liked Robin's question, is apart from sort of the change in trust because of maybe what their patient's expectations are, I sometimes question, are the results actually, those TGT results actually being reviewed with the patients? 

0:38:24.2 S4: And I find that a lot of them don't. Or they haven't seen a copy of the test report. And so having to navigate and have that kind of discussion with the patient to say, "Well, here's what it generally does, but you really need to talk to your oncologist about this for the interpretation and how it might be used for your care." So that's sort of my experience.

0:38:44.7 LS: I think too, we wanna be consistent and equitable and all of those things, but the truth is, one of the other sort of feelings that I got from listening to the focus groups, it's not every patient, even once all of the details about their tumor genomic testing, like kind of bottom line it and they are wanting to move on.

0:39:15.6 LS: And so it's, again, personalizing to the extent possible. One criticism of the genetics literature for years, when we talk about patient outcomes, we tie so much to knowledge, and it's always a question, is it the knowledge that's important or is it their kind of internalization of what we're telling them? And that's a little harder to measure, but maybe the more important thing. And so just to address that.

0:39:51.0 LS: We are doing... General genomic knowledge does not change by showing people this video, as you would imagine. I mean it's two minutes, and if you have good genomics literacy in advance, you probably still do after and vice versa. But we are testing the content, it's very specific to the current situation before and after the video. But yeah, I think we struggle with the same things.

[overlapping conversation]

0:40:24.8 DS: I was gonna say the same thing, yeah.

0:40:27.1 Lauren: There's really interesting commentary, just... Allison had said, Allison, if you wanna come off mute and kinda give your comments? But I think it's challenging because, specifically Vita was saying like for tumor normal, patients are having to supply a saliva sample, and so that becomes confusing for patients if it's not explained correctly or explained in a certain way.

0:40:51.8 DS: And I'll add to that too, that this world is merging too, so you're seeing... We're one of them, labs now doing both hereditary and tumor testing and it's ending up on the same report. Yeah, it's definitely stretching things.

0:41:09.6 Lauren: Yeah, I'm just gonna say, Sarah, if you wanna come off mute? I saw you were on before, just saying how people phrase things, "DNA of cancer" versus "DNA view".

0:41:21.1 Sarah: Yeah, to mirror some of the comments before, it depends on where the patient is at with their testing. Is this post-test counseling? Is this a patient that just saw their oncologist and the oncologist is doing DPT testing, signatera testing, germline testing all in the same day. So trying to give patient effective information without overwhelming them and possibly in already overwhelmed visitor day or diagnosis for them.

0:41:47.0 Sarah: So maybe simplifying it by saying, "This test is the DNA of the cancer," and what alterations did the cancer develop to become the cancer that it is, and can we use those results to target... Identify target treatments, versus looking at the DNA view and using this information to potentially help out family or treatment options as well.

0:42:08.8 Alyson: Yeah, I mirror that. I'm Alyson, I'm the genetic counselor at Tampa General Hospital. And I think that maybe what's important is for me to emphasize the differences in terms of practicality, like one being one's saliva potentially versus the other being tumor or cancer specimen. And then also practically to the patient, what is each test doing? So kind of emphasizing that the testing on the cancer cells is potentially to help with different targeted therapy or different treatment options, or to understand the cancer better.

0:42:40.3 Alyson: And our task, at least in our office, is to focus on seeing if they were born with higher risks, for them or for their family. And so I think focusing on the outcome of the test and why it matters can help to distinguish some.

0:42:52.4 DS: Yeah, good feedback.

0:42:56.0 Lauren: There was an abstract NSGC, I think it was last year now. It was actually one of my students. Moreso focusing on germline testing and the understandably and readability of the materials available online. So Leigha, I do like that for your video, you have not just written text, but voiceover, because some people just are more verbal than... In terms of absorption of material. Or maybe they don't know how to read or don't know certain words.

0:43:26.4 Lauren: So I think that's also important is thinking about the patient in front of you and meeting them where they're at in terms of their comprehension level, I think is always gonna be a challenge when we're thinking of standardized written versus personalized counseling.

0:43:45.4 LS: Yeah, and I think for the genetic counselors, we sort of have this luxury, and I'm not spending hours with patients, I'll be clear about that, [chuckle] but I essentially have just genetics to talk about, for the most part, genetics and related things. And I can totally appreciate how even just the few little touch points that I would typically review with a patient, is really extra for an oncology team who's talking about 50 other things and side effects and they've got more pressing needs as part of the discussion.

0:44:29.2 LS: And so I continuously remind myself that whatever we develop or whatever comes out of this, for the most part it will not be utilized by genetics, most. And so making it something that's digestible in a different clinical setting is really important too obviously.

0:44:51.9 Lauren: There's another good question by Robin in the chat, Rob is not typically involved with TGT but, "Is informed consent typically obtained for this type of testing?"

0:45:04.8 LS: Say that again? 

0:45:08.8 Lauren: So Robin's not involved with TGT testing. Is informed consent typically obtained like it is for germline? 

0:45:17.4 LS: No. No, definitely not the same. There's usually a blanket statement attested to on the TRF by the provider. The literature would suggest that there probably should be some informed consent, but there's no informed consent form, I would say. I think most providers still try to make sure that their patients are giving them informed consent.

0:45:44.9 Lauren: I would say there's definitely a lot more emphasis on informed consent for germline versus a TGT test, and I've seen just in my own clinical practice and now supporting providers across the country, definitely a big difference in the informed consent conversation, and if it is obtained or not, for those two different tests.

0:46:08.7 Lauren: The other other point that Lindsey brings up in the chat, and I think this is a nice one, is the framing of the information, so the post-test and how having that post-test conversation and framing the information in a certain way can allow patients maybe to respond better to the information and saying, "It's disappointing maybe you don't qualify for park inhibitor, but now we know you wouldn't respond well, so we're not gonna give you that treatment. So it allows us to determine what not to give you as well."

0:46:43.5 DS: Yeah, and Michelle brings...

0:46:45.9 LS: And importantly, that's usually not the genetic counselor's job.

0:46:51.1 Lauren: No, it is not. Go ahead, TJ.

0:46:52.0 DS: I was gonna bring up too, Michelle brought up that it's just hard to even know, there's not like we have a lot of times EMRs talking to each other, you can't necessarily see all the records on a patient. My personal experience with plenty of patients, as many of you have also had, coming in saying, "I had genetic testing," and they could be talking about whatever, gene expression profiling of their breast cancer.

0:47:16.4 DS: Yeah, I don't know how people are getting around that, other than trying to get actual copies of reports. A lot of... We even get into DTC testing, but a lot of folks get confused there as well.

0:47:28.5 Lauren: Another point Robin brought up, TJ, I don't know if you saw it is, "Do you think that disappointment is increased if there is a cost, like if insurance doesn't cover?" And I don't know if that was part of the analysis for your group at this point.

0:47:46.5 LS: Well, finances did come up, and they came up not prompted. So I know that... So most of the patients go through a financial assistance process at our center, they kinda fill out the paperwork in the event that their insurance doesn't reimburse for the tumor genomic testing.

0:48:12.3 LS: In practice, I don't think any of the people in the focus group actually had to pay, but they did have to interface with their insurance company and probably ask them to cover it. They receive explanations of benefits that have high amounts on them, and even though it may not result in and out-of-pocket cost, that it worries them and so they still call.

0:48:34.7 LS: So yeah, that's not something we explored specifically, but when we talk about... When we were asking them to a good parts to bad parts that they remembered, a lot of people brought up insurance and that that was one of their biggest concerns that they asked their doctor about, and they remembered filling out the financial paperwork. So the things that I think as providers we wish would have been taking a back seat, those are the things that stuck.

0:49:02.7 DS: Where do you think this is going from your perspective? I mean, not only with your own research, but what do you think's really needed for the field? Which was a big part of your research today, and I'm sure things that are going on, but yeah, just curious.

0:49:17.6 LS: I think it's only going to grow. We're essentially at the spot where cancer... People with cancer need some kind of genetic testing almost across the board, whether it be germline tumor or both. And if we want to have an engaged patient population who feels agency over their treatment, which I think is more desired these days than it probably was in the past, we need to do a good job of at least having resources for patients and explaining things in a way that they want, really.

0:50:01.4 DS: And you've really... Getting back to even the beginning of the call, of how you, personally I've seen you thread the needle of being on the germline and the tumor side. How do you think for many of those folks on here that might only be doing hereditary, how would you suggest they educate their providers in their area? 

0:50:22.3 LS: Educating providers is a huge thing because we're talking all about patient understanding, but I have a fair number of conversations kind of explaining the differences between germline and somatic testing with providers too. I think genetic counselors are really well positioned to discuss both of the things, both with providers and patients. I mean, it's kind of our secret superpower, is having lots of ways to explain things to people with different backgrounds.

0:50:58.7 LS: Personally, it's been really professionally rewarding to take something I was doing for a long time and kind of add a component to it. I know I've heard from my colleagues, they'll reach out to me and say that their providers want them to engage in the tumor testing and they're a little gun-shy to do that.

0:51:14.7 LS: And you can still talk about the testing without going outside your scope. I'm not recommending or suggesting or predicting any kind of treatment or anything like that. I find it very interesting in learning about it, but I would never discuss it with a patient. So yeah, I think to pretend that a genetic counselor is going to be involved in the majority of these discussions is silly, but I also think that we can sort of engage in process improvement and almost in a consultative fashion for a large number of practices, and still be really effective.

0:51:57.9 LS: And if we start to develop and create these tools that help with the communication piece, like if we find something that really works, I think we have good expertise to lend to that.

0:52:14.4 DS: Yeah. Anyone out there with things they wanna share on how they've incorporated this in their health systems? Or helped their clinicians and helped their patients? I see Michelle, we're saying tumor board. Yes, that's an excellent area. We're good. Any final thoughts, Leigha? We're wrapping up.

0:52:43.9 LS: I don't think so. I was looking forward to hear what Shelly had to say, but this has been a good discussion. It's fun.

0:52:50.8 DS: Yeah, no, absolutely, I'm gonna re-share my screen really quick for the next Myriad Live. But no, excellent discussion today. I really appreciate everyone. I have no idea what the screen is sharing. Are people seeing the agenda? 

0:53:08.3 Lauren: Yeah, we're seeing that the subsequent Myriad Live.

0:53:12.2 DS: Okay, great. Yeah, thanks. So just hats off to Leigha, you and the research team you worked with. Definitely encourage everyone to take a peek of that paper. It's an emerging science, it's you're... It's one time where some of the testing is moving faster than research, and understanding actually how to convey this information to patients, as you're hearing from this call.

0:53:40.8 DS: So thank you, Leigha so much, thank you for all the work you're doing. Huge. We need people like you out there doing this type of work, so that we can start making sense of this and translate all this complex information to patients, which is the ultimate goal for all of us.

0:53:57.5 DS: Please join us February 9th, we're gonna be talking genetic testing, advancements in urology. So we're gonna have two special guests, we're gonna have Angelo Baccala, he is a urologist at the Lehigh Valley Health Network. We are also gonna have Kara Cossis, who is a physician assistant at United Urology Group. So both are gonna bring their experiences of incorporating genomics into their care.

0:54:24.3 DS: 'Cause it's really very new for a lot of urologists out there, and there's a lot of really important things from gene expression profiling to figure out for men, if they need active surveillance to BRCA1 and 2, and beyond testing for individuals that have prostate cancer, whether for treatment-related or testing of hereditary risk. So we're gonna cover it all, A-Z, so come with some lunch for that one for those on the East Coast. It's noon Eastern.

0:54:56.9 DS: Thank you so much again, Leigha. Thank you, Lauren, for writing the chat. And really hope that we see everyone at least on one of the two in February. So great discussion today, everyone.

0:55:09.9 Lauren: Thanks, Leigha.

0:55:10.5 LS: Thanks for having me. See you guys later.

0:55:13.9 DS: We'll get this posted probably on Inside The Genome in the next two weeks this year, so it'll be up there. Well, thanks everyone. Have a great rest of your day.

0:55:24.1 Lauren: Bye. Thanks, Leigha.

0:55:29.6 DS: Yeah, thank you Leigha.

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