Data Gathering to Assess Patients Needs - Part 2

In this episode, guest host Dr. Maysa Abu-Khalaf, Director of Breast Medical Oncology at Sidney Kimmel Cancer Center – Jefferson Health examines the role providers play in collecting social determinants of health data from cancer patients to assist with receiving the care they need. Dr. Abu-Khalaf is joined by Dr. Luis Raez, Co-Director of Memorial Cancer Institute of Florida Atlantic University and Whitney Renau, Patient Care Coordinator of Hematology and Oncology from North Florida and South Georgia Veteran Health Services.

TRANSCRIPT

The guests on this podcast episode have no disclosures to declare.a

Dr. Maysa Abu-Khalaf: Social Determinants of Health in Cancer Care podcast. I'm Dr. Maysa Abu-Khalaf, Director of Breast Medical Oncology and Interim Chief of Cancer Services at the Sidney Kimmel Cancer Center at Jefferson Health. I'm joined today by Dr. Luis Raez, Co-director of the Memorial Cancer Institute at Florida Atlantic University and Florida Cancer Center of Excellence, and Whitney Renault, patient care coordinator of hematology and oncology for North Florida and South Georgia Veteran Health Services. Thank you both for being a part of the conversation on data gathering. 

Dr. Luis Raez: It's a pleasure to be here.

Whitney Renau: Thank you for having me. 

Dr. Maysa Abu-Khalaf: In this episode, we will discuss the challenges and barriers to collecting and documenting social determinants of health information for patients after a diagnosis of cancer. Our guests will share their experience in collecting social determinants of health information from patients and share who in their clinical team has been tasked to assist in obtaining this information. Last episode, we discussed data gathering from a patient's perspective, but we'd love to know why you both believe it's important to address social determinants of health and social needs when providing care for your cancer patients. 

Dr. Raez, would you like to just give us your thoughts on the importance of social determinants of health? 

Dr. Luis Raez: Yes. Thank you. I am a medical oncologist. I'm a director of the cancer center here at Memorial and South Florida. It's a public healthcare system. I practice lung cancer. And as much as the social determinants of health topic is a topic that many medical oncologists believe is not ours, that is in the realm of the social worker or somebody else, there's no way to avoid that. Because when you are providing the best target therapy of the world or the best immunotherapy of the world, and the patient has insurance, and you see that the outcomes are not the outcomes that you see in the clinical trials, you see that there is something else other than the biology that has an influence. That is why I consider the social determinants of health very important. In our own cancer center, we have several publications about target therapy, immunotherapy in black patients or Hispanic patients that clearly show inferior outcomes, despite the fact that they are getting the same drugs, the same doctors, the same care that we provide. That's why we're considering our healthcare system, as I said, Memorial Healthcare system, that very important topic that we have been trying to address for the last years.

Dr. Maysa Abu-Khalaf: Thank you so much. Whitney, would you like to add to this?

Whitney Renau: Absolutely. Exactly. It indirectly affects all the outcomes or overall disease survival. If they can't get to the treatments, if they don't eat well during the treatments, if they don't have support during the treatments, it's going to negatively impact all of the outcomes. We do a great job in being able to pay for the drugs and have great regimens, but if we can't get them to the drugs and the regimens and keep them coming, they're going to have overall poor disease survival rates. 

Dr. Maysa Abu-Khalaf: Absolutely. Thank you for that. Well, let's touch on the physician and clinician perspectives. Dr. Raez, there has been a lot of interest in evaluating the impact of SDOH and patient social needs on cancer care delivery. Can you tell our listeners how you ask your patients about SDOH and their social needs and does it happen during the clinic visit or at a later time point?

Dr. Luis Raez: The point of collecting the data of SDOH is the first step because even though you don't have an idea what is the impact of this, that is why in our healthcare system, we are 2000 doctors, we have created a dashboard of SDOH, social determinants of health, that basically we collect 13 of them from social connections, tobacco use, depression, transportation, physical activity, etc.. So this is a dashboard that is embedded in the EMR. So when the physician opens the EMR, if he has, on the left side, the vital signs, the dashboard of SDOH is on the right side with the medications, allergies, everything. So in that way, the physician cannot really ignore it because it's part of his dashboard. 

So we figured out this working with Epic Systems, Epic is one of the most popular EMRs in the United States and this has the capability to do that. So, we were working at the level of the healthcare system, not only for cancer but for everything else. Now that we have these 13 SDOHs, what we do is we are trying to flag a green or red, depending on what deficiency the patient has. You know, if the patient has food insecurity, there is a red. If the patient has transportation it is a green. So the physician can easily see if there is any red in the SDOH dashboard that can bring awareness about if there is something wrong that needs to be addressed. And as we said before, I cannot expect that the patient will have a great outcome if I'm looking at a bunch of reds in the SDOH dashboard, despite the fact that I have the best chemos in the world on the left side.

Dr. Maysa Abu-Khalaf: And are you as a physician collecting this information during the clinic visit? Or is there someone in your office that does that before they go into the clinic space to see you?

Dr. Luis Raez: The dashboard, we already have the template of the dashboard, and then it's being populated by the social workers. When you get a new patient, you come as a new patient in the cancer center, you interview the social workers, the nutritionist, the multidisciplinary team, and then we start to populate the dashboard. But as you understand, also collecting data one time is not enough. The necessities can change. The patient may have transportation one year, next year, no. So, once that dashboard is created and kept by the social workers, the medical assistants in each visit briefly ask the patient if something has changed. The same when they change age, any of your medication has changed, and the medical assistant has to fix it if you have a new drug or not, the medical assistant keeps track of the dashboard whether it is updated or outdated.

Dr. Maysa Abu-Khalaf: Okay, wonderful. So it's continuity of care. It's not something that you just would do one-time point. Every time they come in, the MA makes sure that it's updated, and you as a physician, during the clinic visit, will address any of the social needs that are identified or flagged to you.

Dr. Luis Raez: Yeah, or if I cannot address them because some of them are out of my expertise, for example, the patient may be the patient lost insurance. Now it's January 2, and the patient lost insurance. But at least if I see that red flag, I refer the patient to the social worker immediately because now we need to fix insurance. The patient just lost insurance or something like that. You cannot pretend to ask the doctors to fix these things by themselves because the doctors are really very reticent, very negative about doing more clicks. That's why when you present this to the doctors, the first reaction is everybody goes to the back like, “Oh, my God, they're giving me more work.” 

But it doesn't have to be like that. That's why we work as a team. We want you, at least at the minimum, that the doctor has to do, is notify the social worker, send a- it’s a couple of clicks in the EMR. So we know that this needs to be addressed. We are not asking the doctors to fix things because otherwise, the doctors get against this because they think it's more work for me in the less time, and I don't get paid anything extra, and it's not my problem. It's not like that. It's the same thing when you see that the blood pressure is high, and you notify the nurse to give a pill. Now the SDOH has red flags, and I will notify the social worker to please fix this or the nutritionist or somebody else in the cancer center that can address this. 

Dr. Maysa Abu-Khalaf: And I think that's very important because this comes up a lot. How much work is it? Can you really fit it in during a clinic visit? And the way that you've outlined this, it's a team of clinicians and staff that need to address this collectively and longitudinally. It's not a one-time point where you address it and you move on. 

Whitney, can you tell us, since your work has been with veterans, are there templates or guidelines that you found useful when asking patients about SDOH and social risks? 

Whitney Renau: Great question. Thank you. And that sounds like, again, one of the reasons my job exists is to help physicians, such as yourself, be able to keep determining along the continuum of care what's going on with the vet and if they are having changes. We use the NCCN distress thermometer and problem list, and the nurses actually in our infusion are seeing every single patient and assessing them upfront, and then if they score higher than a four they're being sent to the social worker to be able to assess for needs support. And then we actually are creating a consult to kind of flush out of that assessment into also mental health providers. Depending on what, as Dr. Reyes was saying, where the needs are, we might have consults to both social worker and the mental health team. 

I also do stem cell transplants so we do a very thorough assessment of what they're needing, if they have good social support, economic ability to go through the transplant process, as well as emotional or educational understanding of what they're facing. And I'd like to see us be able to do an assessment like that for each individual. But I very much agree instituting it along the continuum of care is needed. We need to do more, better at that for sure.

Dr. Maysa Abu-Khalaf: Wonderful, thank you. And my next question is obviously there's a team of clinicians and that might change depending on the practice and the patients that we serve. But do you find when you're trying to discuss social needs with patients, Dr. Raez, do you feel that they are comfortable addressing these questions with you, for instance as their treating physician or do you find that they're more likely to talk to the care coordinator or the social worker about these topics? They're sensitive to some patients.

Dr. Luis Raez: In general, no. As I said, for me it's more to educate the doctors to be more open to talk about these things because I feel it's part of our responsibility too. But certainly, we don't have the expertise of the social workers. For example, if there are issues with insurance and we don't know if insurance covers the treatment or not, things like that or for example if my patient has transportation issues, I know that there are a lot of transportation options and NGOs, I don't know which ones are. I know for example, that at one point there were some Uber rides for free. But our social workers are the ones that keep track of the resources available and that may help.  

And the other thing that we did also is we have a link for resources because nobody really has in their memory all of the resources available and certainly we don't want to miss a potential resource. We have a link to a database that the social workers keep all the resources available, that they have been able to collect in the area, that there is a grocery store that provides food for veterans or something. In that way, all of us can always check if we have some interest in- to participate in the process to help the patient, how to help the patient. Because it's important also to have an updated database of resources that can be useful because a lot of times we don't help the patients, not because there are no resources but because we didn't know that. For example, about these Uber or Lyft rides, I didn't know about that until one patient told me, “Hey, by the way, if they don't have transportation, send your patients with these resources.” It's been very important to be aware of the resources that we have.

Dr. Maysa Abu-Khalaf: And I think you touch a very important point as a lot of it is as clinicians and providers, when we see our patients, we need education as well about the resources that are available in the healthcare network and the community. So that when these questions or social needs come up during a clinic visit, that we know that we can reassure them, that we'll link them with a social worker, with a care coordinator that can help them. It's often the providers are not always up to date with this information. So part of the process would be providing some educational information and updates about the resources so that they can discuss these as well with their patients when they're referring them to social work or care coordination or a navigator as well can help with that process.  

So, Whitney, how about you? Do you face challenges making connections with patients and getting them their resources during the VA system?

Whitney Renau: Yeah, it's interesting. I had almost the exact same scenario that Dr. Raez was speaking of with the Uber. I was not aware of one of the resources that we had and that there was an Uber program. And so, again, I second that as far as just making everyone aware of it. We have 15 fellows, so I am constantly educating them on all the resources and they cycle through. So having those updated all the time is definitely a challenge. I think whether it's within a veteran system or not, large systems, just inevitably your resources are going to change continuously. So having somebody update that.  

I would say the thing unique to maybe the veteran population that I've found, because I've worked in the private sector and the academic sector and now I'm in that with veterans, is they have especially at the beginning of the visits and when they first meet with the providers and even the social workers shared with me, when they're not familiar with the team, they have a bit of a generational and institutional kind of stigma of not wanting to present as weak. I think it's kind of unique to the veteran population. 

So myself and the other care coordinators, I feel, kind of play a pivotal role because we develop the relationship with them. We're on the phone with them all the time. We're meeting with them in the clinic so they begin to trust us and so sometimes that will come out. Again, I think that's a huge part of why reassessing across the continuum is so important because they'll walk into their first visit feeling pretty strong, “We're going to beat this, I'm going to do this treatment.” And then for all, you know, three months down the road, their family has left, they don't have a ride, they have nowhere to live, they're out of food or money, and they're not going to share that with just anyone, but they will once they begin to trust you. And I feel like that's a huge part of my role as a care coordinator. 

Dr. Maysa Abu-Khalaf: Thank you. I think that's very important that you point out that those social needs also change. Someone can start out with and they have the support, and then halfway in between, something happens. And if we don't ask again, patients may not feel that's something to address with their physician or somebody, a provider in the clinical setting. 

So, Dr. Raez, it looks like you have a good setup that across the health system that you work in through Epic and you have a platform. So what would your advice be or what tips can you provide to clinicians and other practices where they may not have that, on how to start to incorporate addressing social determinants of health and social needs during the clinical flow and the clinical process? Do you all start it all at once or incrementally?

Dr. Luis Raez: No, I think they can go through the same process. It doesn't matter if you don't have this Epic EMR. We don't want to advertise Epic. There are other EMRs in the United States. But as long as we start this conversation, if you don't know what is the data, how are you going to fix something that you don't know? The minimum is to start to collect the data, and now it's not enough to collect the data. For example, we are not happy only collecting the data and updating the data. Now we really want to show that collecting this data makes a difference in the outcome of the patients three or four years from now. That is the next step. 

But also we have to recognize that Whitney and myself, we work for $3, $4, or $5 Billion dollar corporations, so we have the resources to do this. But 80% of cancer patients are out in the community, so we really need help from the government. I hope that the ASCO and other institutions keep pushing. For example, we already have from Medicare these Z codes. The social determinants of health have the Z as in zebra codes that already exist. But for example, we don't get reimbursed for that because maybe if I have my lung cancer patient that has food insecurity, transportation, and I put today the Z codes, Medicare pats me in the back, but doesn't make a difference. I'm only reporting. But maybe one day they have to recognize that institutions are investing time and effort to collect the Z codes and to document the Z codes and even have interventions. So hopefully they can maybe give reimbursement for these smaller cancer centers. Smaller practices can get more resources than we have so we can implement these types of dashboards and programs. Because I'm happy with what we are doing, but I also understand that we need to do something that makes a difference for most of the patients. Not only for patients from academic centers or large corporations like us.  

That's why I think it's important also for the legislature and the government to give us a hand. We need more resources to address the social determinants of health and as I said, not necessarily to hire more social workers, but the government already, for example, has Z codes. Maybe one day we can get reimbursed in the Z codes. The doctors will be more eager to intervene because remember, we get paid by what we document, what we bill with the coding. So that's why I think that's also important. 

Dr. Maysa Abu-Khalaf: Thank you. This brings up a point where often we're all looking for the reimbursement, we're all looking for the data to support that this in fact affects outcome. But the problem is, if we don't go through the process right now of collecting the data and following, as you said, for a few years upfront, it's hard to ever get to the point where we know for a fact that our interventions have an impact. My thought is always is that we go in parallel and we do what we have to do today and look forward to more data in the future as we collect this. 

The other point is, it's not just, as you said, collecting data. So Whitney, what does success look like for you when you're trying to address a patient's social needs? And are there limitations sometimes where you collect this information and you may not have direct access to the resources that the patient needs to address these issues? 

Whitney Renau: Absolutely. I think you hit the nail on the head. Yes, I can collect the data and know what they're needing, but unless I have a resource and a program to guide them towards, to be able to support them with that, then if anything, it causes a little bit of burnout, I would say, on nursing in particular. Because you're a little stressed that you're not able to provide services to them. So if we could have a consistency of process and screening all of them and then identify the needs and have identified those commonalities of needs, at least you would be able to have some common programs like the ride-sharing program like we were speaking about with Uber and certain resources that are common within those patient populations. Then we could identify that and have funding towards those types of programs. I think that would be the ultimate goal.

Dr. Maysa Abu-Khalaf: Thank you. So do you both have any final thoughts you'd like to leave our listeners with?

Dr. Luis Raez: I'm very happy to participate in this podcast. I think it's very important that all of us start to collect the data as step one and to make everybody aware that this is a real issue, that there is an impact on the survival of the patients, and this is something that needs to be addressed. And the outcomes are not going to be the same for most of the patients because most of the patients in the community unless we address the SDOH in every patient.

Whitney Renau: I would kind of just second that. And I would say my profession basically, its inception was because of social determinants of health because of populations needing navigation, and so I kind of owe my entire profession to being able to be that support throughout that continuum. So I just think with more discussions like we're having, hopefully, that brings attention to the importance of it. And like Dr. Raez said, collecting the data so that we are able to provide that and have that message sent forward to be able to get more resources and identify those resources I think will just cause better patient outcomes.

Dr. Maysa Abu-Khalaf: Well, thank you both Whitney and Dr. Raez for joining us for this episode of ASCO's Social Determinants of Health and Cancer Care podcast. And thank you for all the wonderful work that you do for the patients and for helping us with this process.

Dr. Luis Raez: Thanks for having us.

Whitney Renau: Thank you for having me.

Dr. Maysa Abu-Khalaf: And thanks to our listeners for being a part of this conversation on data gathering. Please join us for the next episode where we talk to a panel on the importance of community organizations, capacity, and infrastructure.

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