Chapter 07: The Office of Health Policy: Focusing on Survivorship
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Description
Dr. Foxhall goes into detail about the Office’s focus on survivorship, including connections with community physicians and mechanisms for survivorship information to community physicians so they can partner in a cancer patient’s after care.
He explains the origins of the Survivorship Initiative and discusses his role on the Survivorship Committee and other programs designed to create an integrated approach to care.
He lists health policy challenges that have an impact on survivors. He describes results of studies that have confirmed the benefits of survivorship programs for patients.
Dr. Foxhall sketches the history of thinking about survivorship. He lists key people at MD Anderson involved in the survivorship program. He also lists some of the places he has been globally (through the GAP program--Global Academic Programs—MD Anderson’s network of sister institutions) to speak about survivorship, stressing that the focus on survivorship is a world issue.
Identifier
FoxhallLE_02_20140213_C07
Publication Date
2-13-2014
City
Houston, Texas
Interview Session
Lewis Foxhall, MD, Oral History Interview, February 13, 2014
Topics Covered
The University of Texas MD Anderson Cancer Center - An Institutional Unit; The Administrator; MD Anderson History; Beyond the Institution; Patients; Patients, Treatment, Survivors; Institutional Mission and Values; Professional Practice; The Professional at Work; The History of Health Care, Patient Care; Information for Patients and the Public; Education
Transcript
Tacey Ann Rosolowski, PhD:
Have there been other moments when the whole sort of scope of this office or this role have expanded or shifted?
Lewis Foxhall, MD:
Well, I think, you know, as far as communication issue with the physicians, this change over the years to focus on cancer survivors in particular has changed. There’s been a 20 percent decline in the mortality rate from cancer over that period of time, and we have, fortunately, seen a steady growth in the number of cancer survivors in the community. So we’re working with physicians now to better communicate with them in a succinct way the nature and type of treatment that the patient received, as well as recommendations for ongoing follow-up care. Many of our patients continue to come here as part of our Survivorship Program, but the majority see their community physicians exclusively or most of the time. So we’re trying to better understand how we can communicate that information to them in a useful way.
Tacey Ann Rosolowski, PhD:
And what are some of the media modes that you use for those communications?
Lewis Foxhall, MD:
Well, it’s similar to what we have now for other reports. We have the myMDAnderson channel, but we also have developed a summary of care we call our “Passport to Care,” which is a brief summary of treatments, complications, and recommendations for ongoing follow-up as part of our Cancer Survivorship Program.
Tacey Ann Rosolowski, PhD:
Now, I have to confess that I really have no idea what a follow-up care might look like, and I know it must be very individual. But could you give me an example of what a physician might need to know?
Lewis Foxhall, MD:
Right. Well, it is fairly straightforward, but the survivorship management has evolved considerably over the last several years, and we have recommendations now that are actually posted on our website for physicians to use if they’re interested. But it involves just a few major areas, one, the traditional test for surveillance of recurrence, and, again, that varies by disease site and stage. The second is in prevention, both primary prevention and addressing issues such as tobacco or nutrition or physical activity, as well as screening for second primary cancers. So patients who’ve had cancer may be at increased risk for developing another cancer, so there are recommendations for that. Then we address any issues related to complications of the patient’s treatment or long-term complications from the cancer itself. And then, finally, issues of a psychosocial nature. So those are fairly common among the survivor population. So we have guidelines, recommendations. Depending on the cancer type, situation will vary from person to person, but those are available and we try to work with our community physicians to be sure they are aware of those and can apply them as they need to.
Tacey Ann Rosolowski, PhD:
Now, that’s the second time that you’ve mentioned the survivorship, and I just noticed that you, since 2006, have served as co-chair of the Cancer Survivorship Support Outreach and Policy Subcommittee. So I’m wondering what your role has been on that. What’s the function of that committee in terms of supporting this kind of relationship?
Lewis Foxhall, MD:
Right. Well, it’s a part of our overall survivorship initiative here at the institution, so I was involved with that from the early stages of development. We felt there was a need to focus attention on, first, support services for patients here in the Center, but also issues around education for the healthcare professionals so they could better understand this more recent approach to survivorship care that was originally espoused by the Institute of Medicine. That was the one that we’ve been following.
Tacey Ann Rosolowski, PhD:
So what have the changes been? What was the original approach, and then how has MD Anderson changed [unclear]?
Lewis Foxhall, MD:
Well, initially there was a fragmented and disorganized approach to management of cancer survivors in the community. So as I said, some patients after their treatment would continue to come back here, and come back here for years, but there was no real organized approach to that management. They just continued to be seen by their treating physician. So the Institute of Medicine did a big study and made recommendations several years ago that we needed to focus on those major areas that I just went over, and then oftentimes patients were lost to follow-up when they transition from active treatment back into the community. So that group, in particular, they felt was important for them to be brought back into the system or remain in the system so that they could get appropriate care. So that’s part of what we’ve been trying to do, so we’ve been focusing on our efforts here within the institution, but we also felt it was important to reach out to the community physician. So that was our role, provide education, provide outreach to the physician community, and also help develop our website, our public information, so that patients would better understand what services were available here to them as a cancer survivor. And then we also looked at—provided an overview of any pertinent policy issues related to survivorship management that were out there that we needed to pay attention to.
Tacey Ann Rosolowski, PhD:
And what were some of the policy issues that you identified?
Lewis Foxhall, MD:
Well, there are a number of initiatives that have been proposed, but so far not moved ahead, in particular on the idea of some sort of payment for the development of these treatment summaries and care plans. So it’s recommended, it’s even become a standard of care for the Commission on Cancer Hospitals, but so far there’s no specific way to pay for making that happen, so it just has to be done. So that’s one initiative. The other were things that related to the patient privacy issues, how patients, in particular their genetic information, which may be part of the survivorship follow-up care, was managed. There was subsequently a law passed that protected that information so that patients could feel comfortable in examining their own personal history or family history, and doing testing to see if they might have some genetic predisposition themselves or in their families for problems. So that was an important area. So those are just a couple of the main areas that were tracked along and made comments on as we moved ahead.
Tacey Ann Rosolowski, PhD:
In addition to the effectiveness of follow-up, was there some way in which this kind of creating a partnership with the community in treatment helped relieve some of the work burden on MD Anderson, kind of freeing up people to see new patients? I’m trying to get a sense of that piece, too, if there was a financial component to it for the institution.
Lewis Foxhall, MD:
Well, the financial component is primarily related to moving cancer patients who are stable and need no special follow-up or need nothing more than routine follow-up out of the Acute Care Clinic so that it frees up time for new patients. So that’s really been the main issue. So we are just scratching the surface on trying to better develop an approach to what’s sometimes called shared care; that is, interaction between the community physicians, in particular primary care physicians, and the Cancer Center, in trying to improve their capacity and comfort level while taking care of patients who are otherwise stable. So we’re just beginning that journey.
Tacey Ann Rosolowski, PhD:
Now, talk to me about this shared care. I’ve never heard that term before. How would you foresee that working, and what are the challenges to setting that up?
Lewis Foxhall, MD:
Well, there are different models of survivorship care that have been described. One is what we do here, which is subspecialty care within specialized site-specific clinics, and it’s primarily by midlevel practitioners under the supervision of our faculty. The other is more community-based survivorship clinics where they may see a variety of different cancer types within the same setting, often managed by either nurses or midlevel practitioners or, at times, from other oncology professionals. And then the idea of shared care is one in which the responsibilities for follow-up are divided in a prescribed way between either the community oncologist or the primary care physician, or in our case, the Cancer Center and the primary care physician. So this is the sort of care that often goes on, but is rarely ever done in an organized way, so there’s still lack of communication, lack of interaction across the different professionals that are seeing, listening to cancer survivors. So there’s opportunity for improvement there.
Tacey Ann Rosolowski, PhD:
Now, what would it mean to organize that, those relationships, organize that type of care?
Lewis Foxhall, MD:
Well, what we’re trying to do now is to reach out to primary care practices, and, actually, this is one of the grants that we’re working on right now, is to develop a program where we can work with these practices to develop the survivorship treatment summaries and care plans for each of the cancer survivors, and then to prompt an interaction between the primary care professional and the oncologist or us, if that’s the case, to determine where the patient’s getting each component of their survivorship follow-up, if they’re getting it, and then decide who’s responsible for what so we are better prepared to deliver those services in a consistent fashion. So that’s just getting started. We’ve communicated with physicians through various education programs, and oncologists through various education programs about the need for that, but it’s been very slow to be adopted.
Tacey Ann Rosolowski, PhD:
Why?
Lewis Foxhall, MD:
Nobody pays for it. It’s really an unfunded mandate, and there is general fragmentation in our healthcare system anyway, so there’s no real support for that to happen. So we’re trying to put together an approach that we think might help that happen. So we’ll see, but that’s something we’re working on right now.
Tacey Ann Rosolowski, PhD:
Sounds pretty challenging to do. (laughs)
Lewis Foxhall, MD:
It’s so simple anybody could do it.
Tacey Ann Rosolowski, PhD:
Yeah. I’m just thinking about that, you know—
Lewis Foxhall, MD:
No, it doesn’t happen spontaneously. I mean, you can’t argue with the logic of that approach, but it’s just, you know, there’s just no incentive for anybody to do that, and the patients can’t necessarily be expected to organize all that themselves. So often it just doesn’t happen. So follow-up is hit or miss, and some things get done and some things don’t get done, and we feel like we’re not optimizing the patients’ ability to really get the most out of their treatment. So there may be many patients, in particular breast cancer patients, are more likely to have a problem with something besides their cancer coming back. So if we’re not addressing all these other issues, then the benefit they get from having gone through that treatment is diminished.
Tacey Ann Rosolowski, PhD:
Wow.
Lewis Foxhall, MD:
So that’s what we’re really trying to do, so it’s really part and parcel of the whole fragmentation and disorganization we have in our healthcare system in this country, and it’s just another manifestation of that, in a sense.
Tacey Ann Rosolowski, PhD:
Now, have there been studies done to kind of put quantitative numbers to the impact of this lack of organized follow-up on different types of cancer patients?
Lewis Foxhall, MD:
To some degree, so there’s a couple of studies that have looked at the impact of these care plans and whether that really prevents things, and the results have been mixed so far, but there are really not a lot of studies out there. But the things that are recommended have all been shown to work, and we know people die less often from cancer if we find it early and treat it early, so screening is important. Cancer surveillance for recurrence has been shown to be effective and efficient if done in the right way. And, of course, it’s important to address the complications of treatment, so rehabilitation and the assessment of any ongoing organ damage is, of course, a thing that we would do anyway. So it just sometimes gets missed in the mix of things. So, all those things that are part of survivorship care or independently are shown to be beneficial, but there’s not really been a big study that’s shown that it’s more effective than just usual care. But some smaller ones have shown [unclear].
Tacey Ann Rosolowski, PhD:
Well, I was also wondering if there are any numbers on the effect of not having any monitoring of follow-up. Is there a sense that you could put numbers to what the impact is on patients of just having the fragmented system that now exists?
Lewis Foxhall, MD:
Well, I mean, it’s just the current state. I mean, we know what survivorship rates are for various cancer types and that’s sort of the ultimate test of that.
Tacey Ann Rosolowski, PhD:
I mean, you know, 20 percent improvement in survivorship, that sounds like a really great number, and I’m wondering has that made people kind of, you know, casual about survivorship, like, “Oh, it’s been done”?
Lewis Foxhall, MD:
So the 20 percent is a reduction in mortality from cancer, so 20 percent the rate per 100,000 people who die from cancer in this country has dropped that much over that period of time. So that started in the early nineties, about the time I came to MD Anderson. That’s an interesting coincidence. (Rosolowski laughs.) But that’s attributable to many things, you know, so better prevention, screening, early detection, but it’s also the significant improvements that we’ve had in treatment over those years that have made a big difference there. So that’s really the main reason for that. So our work in improving survivorship care has really been fairly recent, so that’s been over the last few years that we’ve really been just starting to work in that area. So many of those things are really evolving, but the numbers of survivors has just steadily been increasing since really the early, mid-seventies, and now two-thirds of people live five years or longer with their diagnosis, compared to when I started practice in the late seventies, early eighties, it was barely half. So there’s been a big, big change, so that means more and more people are living longer, are staying alive after being treated successfully for cancer. So we’ve come to the—it’s now obvious observation, but before wasn’t necessarily something we spent a lot of time worrying about, was, hey, we need to be taking care of these people after their treatment’s done. We’re not really finished with caring for the patient, so we need to really look at what we can do, because many of these patients live many years after their cancer treatment. So what can we do to maximize the amount of time they live after treatment and to improve the quality of life that they have after their cancer treatment? So many of the things we do to patients to cure them are difficult to go through and may leave some lasting problems, so we need to better understand and apply approaches that we know work to help them deal with that and to get the most out of their time after their successful treatment.
Tacey Ann Rosolowski, PhD:
So what’s on your wish list for survivorship care? Obviously you’ve got some real hurdles to address in setting some of this up. But if the way were clear, what would you want to see accomplished?
Lewis Foxhall, MD:
I wish we would get the super grant so we could try this. Anyway. (Rosolowski laughs.) So really, you know, we’re really just beginning to test this, these ideas out in the community, you know. We’ve done it here, we want to continue our robust survivorship programs here in the Cancer Center. And for people who are treated here and choose to or are able to come back here for follow-up, that’s great, but we recognize that there is a lot of work to be done in the community to try to better understand and to facilitate the delivery of these services in a community setting. So that’s really kind of where we’re trying to go, and we’re, like I say, just beginning to develop a small network of practices. We’re actually going to focus on training programs so we can include education, and as the clinicians go through their training, they’ll be better exposed to the principles of survivorship care and hopefully internalize those as part of their routine training, so when they then move out into practice, they’ll be all set and ready to go and can become champions for survivorship care in whatever setting they wind up in. So over time, this hopefully would lead to a broader cadre of clinicians who are trained in survivorship management, who are comfortable with it, and hopefully would then be able to kind of pay that forward and provide care for their patients.
Tacey Ann Rosolowski, PhD:
And do you mind mentioning the names of some of these programs? Where are they located?
Lewis Foxhall, MD:
There’s several across the state. There’s one in Tyler; one in Austin; one in Baytown; one here in Houston, southwest Houston; and Galveston. So those are the first batch that we’re starting to work with, and we would hope, if this is successful, we could expand it out to other programs across the state or even nationally. I mean, we want to come up with an approach that’s scalable and one that can be adopted by other programs. So we’re beginning with family medicine. There’s also general internal medicine. There are other primary care-related specialties that may have an interest in this. But if we can just implement these few programs as a pilot really to see if it’s feasible and to really better understand how we can approach this in that setting and what that means to the patients, you know, we want to track and see if this really does help us provide a better level of service to these patients. That’s really the primary goal. And then if we got some additional benefits in education and training along the way, well, great, but we really hope to focus on that issue of [unclear] do what we know needs to be done in that setting so we can reach a broader number of patients wherever they’re treated. They don’t have to be MD Anderson patients. So that’s kind of where we’re trying to go with that.
Tacey Ann Rosolowski, PhD:
I have to say this is a real eye-opener. You know, I hadn’t—I think when people focus on the cancer diagnosis and then they focus on the stress of getting treatment, and, well, what happens after, it’s, “Well, I’m so glad to be treated, maybe that’s the endpoint.” But obviously, it’s not. And so this whole arena of what happens in the rest of your life, however long that might be, is maybe hazy to people who haven’t gone through the process now.
Lewis Foxhall, MD:
Sure. Sure. So it’s a concept, I think, that’s been evolving for some time, and there was actually one of the first physicians to espouse this was a person named Fitzhugh Mullins, who was actually a physician patient. So he had cancer and then observed some of these things, and then he saw that there were different phases of the process that he really kind of considered being a cancer survivor starting with day one when you’re told you have cancer. And then you go through these various phases of sort of the acute phase of treatment and all the issues around that, and then sort of a medium post-treatment intermediate phase where you’re still trying to kind of get back on your feet and address some of the more pressing issues around having just been wrestling with a life-threatening situation. And then the more chronic phase that, you know, [unclear] what else do you need to do, what do you need to pay attention to, what things are different when you want to get back to your life and do what do you want to do. But you still need to be aware of things that you can do to help yourself, to stay healthy to avoid having problems down the road.
Tacey Ann Rosolowski, PhD:
And when did Dr. Mullins theorize these [unclear]?
Lewis Foxhall, MD:
That was back in the seventies or eighties. It was quite a long time ago.
Tacey Ann Rosolowski, PhD:
Wow. And so he was obviously ahead of the curve.
Lewis Foxhall, MD:
He was quite an interesting person, yes. He kind of wrote about how just being a physician but going through cancer treatment gave him a different perspective that kind of helped him highlight those perceptions.
Tacey Ann Rosolowski, PhD:
Well, it’s interesting the way you even phrased what he said, learning how to help yourself. I was talking to Barbara Solomon [sic; should be Barbara Summers, Ph.D. [Oral History Interview] ] and she was talking about nursing, the motive of nursing is to model for the patient how they can then care for themselves, and it was a very interesting kind of approach, the importance of empowering patients, giving them control. Really neat. So that’s the kind of model that people are looking at and adopting. It’s a convenient way of dividing up the cancer experience, basically. Well, is there anything else that you’d like to talk about with regards to the work in the institution on survivorship?
Lewis Foxhall, MD:
Well, I think those are really kind of the highlights right now. I’ve been fortunate to work with some really great people: Dr. Alma Rodriguez [oral history interview], she heads up our Survivorship Program; Dr. Terry Beavers [phonetic], who’s been involved with it from the Prevention Clinic point of view; and then Fran Zestra [phonetic], who’s our program director, all really great champions of the effort in moving this forward and over the last several years has been a rewarding experience in seeing that partner and develop and get mature here in the Cancer Center has been great. So we’re trying to understand how we can really begin to move that forward, so, fortunately, with the support of Dr. Rodriguez, I’ve been able to do a good bit of educational programming, both live lectures, but also we’ve developed a number of education programs that we’ve put online, Dr. Kendra Wood [phonetic], who’s been helpful in facilitating that process. We’ve lectured all around the state, different parts of the country, and we’ll actually be going to Korea for our GAP program in May, and we’ll have a section on survivorship discussions there, and I’ll be talking to some of their primary care clinicians and kind of learn a little bit more about how they’re doing it. They’ve begun to do some survivorship programming. So it’s interesting that these concepts are gradually spreading across not only the U.S., but also in other countries as well.
Tacey Ann Rosolowski, PhD:
Now, you mentioned the GAP program?
Lewis Foxhall, MD:
Global Academic Programs.
Tacey Ann Rosolowski, PhD:
Oh, GAP.
Lewis Foxhall, MD:
G-A-P, GAP.
Tacey Ann Rosolowski, PhD:
Okay. And what is that?
Lewis Foxhall, MD:
We have a number of what we call sister institutions around the world that work with us primarily on research efforts, but we also have a conference, annual conference that brings people together and individuals submit abstracts about their work or their interest and present those, talk about them and share information.
Tacey Ann Rosolowski, PhD:
So that’s the GAP program?
Lewis Foxhall, MD:
Yeah. So the Global Academic Program is this organization of sister institutions that work together.
Tacey Ann Rosolowski, PhD:
I’d never heard that, never heard it referred to that as that before. So that’s interesting. So other nations are dealing with this as well, and [unclear] learning experience.
Lewis Foxhall, MD:
Cancer is an equal opportunity offender.
Recommended Citation
Foxhall, Lewis E. MD and Rosolowski, Tacey A. PhD, "Chapter 07: The Office of Health Policy: Focusing on Survivorship" (2014). Interview Chapters. 856.
https://openworks.mdanderson.org/mchv_interviewchapters/856
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