Scaling Up Point-of-Care Genetic Testing in the VA: A Nurse-Led Initiative - Kara Maxwell

November 18, 2022

Kara Maxwell shares insights about the groundbreaking work she and her team have been undertaking in germline genetic testing. Supported by PCF funds, they aim to bolster genetic testing programs for patients within the VA system and beyond. Notably, Dr. Maxwell praises the contributions of her colleague, Dr. Lisa Aiello, a skilled PhD-trained nurse, who has been instrumental in establishing a point-of-care genetic testing program within their oncology practice. This innovative approach, which demonstrates promising results, notably improving genetic testing completion rates for self-identified Black veterans, emphasizes the valuable role of nurses in interpreting complex genetic information and guiding patients through the process. The team also developed an educational program to enhance genetic knowledge among healthcare providers.


Kara N. Maxwell, MD, PhD, Assistant Professor of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA

Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, MA

Read the Full Video Transcript

Alicia Morgans: Hi, I'm so excited to be with Dr. Kara Maxwell of the University of Pennsylvania and the Philadelphia VA. And we are talking about some really important work that you and your team have been doing, funded by PCF funds, looking at germline genetic testing, and how do we best implement programs that support patients to do that within a VA system or anywhere really. So, tell me a little bit about the funding and what your program is, what you've launched.

Kara Maxwell: Yeah. Actually, I have to give credit to Dr. Julie Lynch within the VA, who really, this was her brain child actually to begin with, which was, we have, unfortunately, not enough genetics providers throughout our nation, but definitely within the VA. And nurses are a wonderful, rich resource within many healthcare systems, but particularly in the VA. And so, Dr. Lynch, PCF, myself, we kind of thought, "Well, we could try to use this rich resource within the VA to improve our genetic testing." So, prior to this award, at least at Philadelphia, our Veterans had to go through a telegenetic service and telegenetics in many settings works well. However, we were finding, in our setting, that it was not working well for our Veterans, and approximately 20% of eligibleVeterans were actually going through and completing the genetic testing.

So, IBX through PCF funded this grant, which allowed me to hire a really talented and wonderful PhD trained nurse, Dr. Lisa Aiello, who has been my partner in this program. And her and I basically set out to say, "Let's embed a point of care, genetic testing program within our oncology practice, and then open it up within the VA to any other providers that wanted to refer to us." And it's certainly not a new or novel concept. Many people are looking into these things, but for us, I think this was sort of a new program because of the type of patient population we serve at the Philadelphia VA.

So, our Veterans encompass about 50% individuals of African-American, self-identified race ethnicity. So, it's definitely a different kind of clinic than where most of these sort of programs have been launched prior.

Alicia Morgans: So, what was it about this live point-of-care approach that you thought may be better to serve the patients that you were trying to reach?

Kara Maxwell: Right. And I think one sort of important point, just to first frame your question, is that genetic testing is traditionally done in a model where a genetic counselor reaches out to a patient and does the initial call. And we are certainly by no means saying that we want to cut a genetic counselor out of the process. I think that's most important. But to speak, to answer your question, why we thought this would work was that cancer patients are often in a place where they are completely overwhelmed by everything that's happening. And nurses are particularly well trained to understand and have a level of oncology practice knowledge that other providers might not have to really help a patient navigate through adding in genetic testing with that process.

And in addition, by working closely and being in clinic with the oncology providers, that allows a level of trust that the patient then has. I mean, the patient's looking at their oncologist as kind of, "That's my quarterback," and if they're there with this nurse saying, "You know what? You should talk to this person. They're doing this important part of your treatment. It might have implications for your family." We really thought that that would be really beneficial.

So, other programs in places like the University of Pennsylvania have certainly shown point of care models work, but those are often very resource rich environments with a lot of staff and genetic counselors. So, this was really just seeing if one person could make a difference. And we were just absolutely thrilled to see what an effect Lisa and my program could have. And so, we analyzed the first approximately 150 patients that we've brought through, and for patients that were newly referred to genetics, sort of never had this come up before, and compared them to patients who referred to a centralized telegenic system. And we showed a fourfold increase completion rate of genetic testing.

And when we did multi-variable logistic regression analysis, we found actually that increase in genetic testing wasn't significant for our self-identified white Veterans, but was highly significant for our self-identified Black Veterans. And that was really just, to me, such an important point of this study to show that we could break down some of these barriers that we often talk about within racially-diverse communities and say, "You know what? This hypothesis might have something to it, that having someone who understands and has that compassionate level of care like a oncology nurse does can really help make the patient feel comfortable and say, "Yeah, that's something I want to do."

Alicia Morgans: The other thing that this person can do is really overcome numeracy, literacy issues, health literacy is such an important part of what we do, especially when it comes to genetics. And you do all of your work in genetics. So yes, you must know this very, very well.

Kara Maxwell: Yes, exactly. And I think that was also a big part of really utilizing our nursing population. And again, honestly, we think all genetics providers are fantastic, but nurses are trained to break complex medical decisions down for the patient that they're taking care of. And so, I really do think that this particular level of provider is incredibly helpful. And the other thing that is, I think, special about doing things this way is we're still part of a larger team. We're still working with the centralized genetic service within VA. We still have access to the genetic counselors and the other medical genetics providers within that system for our really complex cases that still do require another level of genetics care. This allows us, though, to get that testing done at volume, and then we can always refer our patients to more specialized levels of care if they need it.

Alicia Morgans: Well, where do you go from here, Dr. Maxwell? Because this is an amazing start.

Kara Maxwell: Thank you.

Alicia Morgans: But you're scratching the surface.

Kara Maxwell: Very much scratching the surface. It's one VA, a very small set of patients. So, one other component of this grant was not just to start a clinical practice, but also to develop an education program. So, what Lisa and I developed over the last year was really sort of a primer to genetics that was opened up to nurses, but really could be used for anybody because unfortunately, most healthcare providers don't get a lot of genetics training in their healthcare professional development, if they were trained anywhere from five years back.

And so, what we developed was a series of lectures that occurs over the year, once a month, along with a once-monthly case conference where we bring real cases, real pedigrees, walk through what our thought processes are. And the goal of that year-long program is to say, "Let me get you to speed so that you've got the genetic terminology, and then if you really like this... So, we can not only learn, but figure out, "Do I like this aspect of care?"

As a practicing nurse or another practicing provider, you could then enroll in a more intensive course. For example, City of Hope has an intensive genetics course that trains nurses, doctors, and other providers to provide genetic care. And so, we enrolled 135 nurses-

Alicia Morgans: Wow.

Kara Maxwell: ... in last year's program from every section of the VA across the country. And so, we're hoping to continue this with some support now from the National Physician Oncology Office and the Office of Research and Development. And that, we hope, will then give us a cohort of people, and we can then provide the expertise to say, "This is how we set up our program. We think that this would work well for you, as well." And I want to just make sure I am very much acknowledging all of the amazing people within VA that I work with. So Maren Scheuner, Mike Kelly, Sarah Ahmed are all individuals involved... Oh, and Carolyn Menendez, sorry. ... within the National Precision Oncology program that are also working to develop these programs for increasing genetic care.

Alicia Morgans: Wow. Well, to your point, this is certainly making quite a difference in the VA, not just on an individual VA level, but across the board in terms of all of these trainees who are coming out with that expertise. Do you see it ever expanding beyond the VA? Is this something that might be scalable to a more generalizable, non-Veteran population or clinical practice setting?

Kara Maxwell: Yeah, I think that there are so many amazingly talented genetic counselors that are out there, and their expertise, in my humble opinion, is really in complex cases and helping with genetic testing and genetic results that are at a level that is consistent with their training. Whereas with oncology, we now have calls of potentially doing genetic testing on every cancer patient. That's a lot of people. And we aren't then well utilizing our highly trained genetic counselors if we do testing on everyone. Whereas every oncology practice involves nurses or advanced practice nurses. I think it would be a great way for a lot of practices to do all of that sort of testing to make sure you can get it done and then utilize everybody really practicing at the top of their license, as we say, put people in the right kind of places for their particular expertise.

Alicia Morgans: And also to support those doctors who don't have the comfort of doing this work.

Kara Maxwell: Yes.

Alicia Morgans: And there are definitely oncologists, urologists, who care for patients with prostate cancer who, like you said, never had the training-

Kara Maxwell: Right.

Alicia Morgans: ... and don't feel comfortable, but they absolutely understand the implications.

Kara Maxwell: Yes.

Alicia Morgans: And so when they need support, these could be some of the workforce that helps to support that.

Kara Maxwell: Yes, definitely.

Alicia Morgans: Well, thank you so much for your time. Congratulations again. What an amazing job you're doing at really phenomenally using these Prostate Cancer Foundation funds to make a huge difference for a population that is often overlooked. And you're only just getting started. Thank you for your time.

Kara Maxwell: Thank you so much.