Data Gathering to Assess Patients Needs - Part 1

In this episode, guest host Dr. Leslie Hinyard explores the importance of collecting social determinants of health data from patients to assess needs and the best practices to collect this data in an oncology setting. We enlist expert insights from Wenora Johnson, a cancer survivor and patient advocate, and Krista Nelson, an Oncology Social Worker at Providence Health and Services and past President of the Association of Community Cancer Centers.

TRANSCRIPT

The guest on this podcast episode has no disclosures to declare.

Dr. Leslie Hinyard: Hello, everyone, and welcome to ASCO's Social Determinants of Health and Cancer Care Podcast. I'm Dr. Leslie Hinyard, Chair of the Department of Health and Clinical Outcomes Research and Executive Director of the Advanced Health Data Institute at the St. Louis University School of Medicine. I'm here with Krista Nelson, past President of the Association of Community Cancer Centers and an Oncology Social Worker at Providence Health and Services. And also, Wenora Johnson, a cancer survivor, and patient advocate. Thank you both so much for joining us in this conversation on data gathering, the patient's perspective.

And we're going to dive right in. Social Determinants of Health, or SDOH, as we like to refer to it, represent nonmedical factors that affect health, that is, the characteristics of where we live, work, and play that influence our health. These social determinants are only recently being explicitly considered in medical context. Currently, there's no consensus on what questions should be asked of patients, who should be asking questions about SDOH, and how the information will be used to improve patient care.

In this episode, we will be discussing the importance of collecting SDOH data from patients in order to assess needs. We hope to discuss best practices to collect SDOH data in an oncology setting from both the patient and provider perspectives.

Now, I'd like to start with you, Krista. Social Determinants of Health have been a topic at the forefront of public health conversations, especially with COVID-19. Can you tell our listeners how you define this term?

Krista Nelson: Yes. Thank you so much for checking in and for this opportunity to talk about Social Determinants of Health. As an oncology social worker, we've known that Social Determinants of Health impact patients' outcomes, and we see it every day. And the National Academies of Science, Engineering, and Medicine came out in 2019, right before the COVID-19 pandemic, they came out with a report talking about the importance of integrating social needs care into the delivery of health care to improve the nation's health. So, when I think about Social Determinants of Health, just like you had just said, it's the environment or the conditions in which people are born, grow, work, worship, live, and age. And it's how all those forces and systems shape the conditions of their daily life. So, when I think of cancer patients and Social Determinants of Health, I think of socioeconomic status, education, job security, food stability, housing, social inclusion, and all the environmental factors that really construct a patient's environment.

Dr. Leslie Hinyard: Thank you so much. Wenora, as a cancer survivor and a patient advocate, how do you define social needs and why is it important for patients to self-report these social needs?

Wenora Johnson: That is a great question. And then I actually look at it in four different ways. I think first and foremost about my psychological needs. And those needs are just basic for human survival, like food, water, clothing, housing, and then finally just overall health and quality of life. That second one is going to be my safety needs. Protection from violence and theft, emotional stability, and well-being. And then what we're all feeling a pinch of lately is financial security. And then my third one is love and belonging needs, having close bonds with our family, friends, physical and emotional intimacy, interacting with social groups, all of this provides us with the feelings of love and connection we need not only just to survive, but to thrive off of. And then finally, fulfillment of our full potential. This can be in just caring for others, improving things like our artistic abilities like cooking, music, athletics, and then experiencing new things in life, traveling, things like that, that just do a lot for our physical psyche. So, there's so much when it comes to social determinants that can affect us as patients. And self-reporting these needs are just essential and can be at the same time difficult for patients to do.

Dr. Leslie Hinyard: Now, speaking of difficult things that patients can do, Krista, in your work, what are the most commonly reported needs or social risks that you encounter reported by patients?

Krista Nelson: Well, I really loved what Wenora just said, and I think that really articulates exactly what I'm hearing day-to-day in the work as an oncology social worker. Right away, I think the biggest struggle or the reason we get notified of a patient having needs is around financial toxicity. So, we know that finances and medical bankruptcy is caused, number one, by a cancer diagnosis. But if you think about your socioeconomic status, it really impacts everything that we do. It's our ability to be able to get to treatment. It's an ability to get healthy food, it's an ability to be able to take time off of work and actually get to the treatment. It might mean, "Gosh, do I have someone who can watch my children? And can I pay for screening, can I pay for childcare to go to screening? Am I going to prioritize that? And most of all, do I have access to insurance and good health care?" So, I'm hearing a lot about that.

The other thing I think I hear a lot about is social isolation. And when Wenora spoke about it, about your community, what I heard her saying is her community and having that sense of love. And when I think about social isolation, sometimes a trigger for me is when someone is coming in for a giant cancer surgery and needs a ride to the treatment. Now, you may think, what does that tell me as a social worker? But what that tells me is that this person may not have a giant community of people around them to help them if they have no one who can bring them in for this big surgery. A lot of times when I'm working with physicians and we're meeting with patients, there is so much isolation out there that I remind doctors, this might have been the only time that this patient was physically touched in the last year when you do your exam.

Other things that come up are housing insecurity. We're seeing a lot of that in the community where I live. And then also just access to healthcare and the ability to navigate it. A referral of a patient that I was seeing because the physician noticed that they had a lot of weight loss, and they were in breast cancer survivorship and there was some question of maybe dementia or access to food. And so, of course, I was eager to check in with this patient who lives in kind of a rural part of our state. And she was 80 years old. And when I went to talk with her, I was kind of wondering about depression. Is she not motivated to eat? What's happening here? And as I talked with her and I asked her about her appetite and I asked about finances, she shared with me that it was her teeth and that her teeth were broken, and she was having a hard time chewing. And I asked her specifically, was she interested in dental care? And she said, "No, not really at this place in my life." But I was able to find some supplements through messaging our dietitian. But what also came out is that she said, "Well, I don't have a computer or a smartphone to be able to order this."

So even though here we are in 2023, I do think there is a large population of people who don't have access to the resources that we think as practitioners or providers that maybe are more accessible. So, it's really important to meet with each patient where they're at and figure out the best plan for them.

Dr. Leslie Hinyard: Thank you, Krista. This next question is actually for both of you. In addressing these needs from a patient, who should they be having these conversations with? Now, should patients rely on their healthcare team or their providers to address their social needs? And do you believe patients are comfortable having conversations about social needs with their providers? And I'm going to go ahead and ask Wenora to speak first and then Krista, I'd love to hear your response as well.

Wenora Johnson: This is really such a great conversation because what I'm getting out of this is really that communication and teamwork are essential for providing just plain old good quality healthcare. And it can be difficult for patients to have these conversations with their healthcare team without feeling stigmatized or made to feel less than because they can't adequately take care of themselves. I think of the example of my brother who suffered from mental health issues and he also had a late stage cancer, but a lot of times just felt powerless and unable to speak up because of his mental health diagnosis. His fear of being treated differently was real, and at times, this experience caused him to just shut down when it came to his own care.

And so as a big sister, this is where I had the opportunity to step in and be that virtual, more or less, caregiver for him and speaking up and being that voice for him. If nothing else, this is where it takes a village, an entire team to recognize maybe what symptoms or to help the patient when the patient can't speak up. It means taking a little bit more notice of how your patients look, as Krista mentioned. Do they look well-fed and clothed? How are they getting to their appointments? Do they even have any close family or friends that they can talk to during their appointments? This is just all so important just for our general survivorship.

And looking forward to this continued discussion. So, bring it on, Krista.

Krista Nelson: Yeah, I appreciate what you said, Wenora. And often there is this body of literature out there that talks about patients having a loved one at the bedside being a vital sign. I think patients have a difficult time bringing this up. I can imagine, I, myself would wonder about what I say and if it's going to impact the treatment that I'm offered. So, for instance, if you're having trouble financially, you may not want to talk about your inability to pay, thinking that you may not get the same treatment offered. So, I think when we talk about these social needs, the most important thing is that everyone is talking about it all the time, more than once. And when you ask should patients bring this up? Absolutely. But I also think there is a power differential. And just to acknowledge that patients, I want them to feel empowered; people with cancer and they may just be so overwhelmed with everything else that's happening.

When the doctor is saying you have cancer, their instant thought may be, "Oh my goodness, how am I going to pay my rent or how am I going to tell my child?" And so, using the rest of the team; being an oncology social worker, we do a ton of screening when patients are first diagnosed, "What are some things or anything you're concerned about?" Well, we know people's anxiety just coming in is going to be high, they're coming to see an oncologist for the first time. But I think everyone on the team, it's our responsibility to be checking in and normalizing the experience that everybody needs help and that we have a whole team of specialists, people who are focused on emotional health, physical health, and really paying attention to any barriers that might get in the way of that patient being successful for the treatment that they want.

Dr. Leslie Hinyard: Thank you both for such really great responses. Now, moving on to being proactive in one's health decisions and care, do you think we will get to universal screening for patient social needs and Social Determinants of Health in the cancer care delivery system?

Krista Nelson: I'll take that one first. Wenora, if that's okay. I do think within the healthcare system we are doing a better job of getting some patient-reported outcomes. So, we are doing a really good job of distress screening that's taking a pulse in the moment of where someone's rating their psychosocial distress on a scale of 0 to 10. And with that, there's often a needs list. The problem is really to screen all of these patients and to address all of their needs takes an army. It's a lot of time and it is important, but there isn't a lot of reimbursement for this type of support within healthcare. And I think that's something that's going to change.

But I also know that addressing Social Determinants of Health has an impact on health outcomes of over 50%. It's well-documented. And so when you think about some of the treatments that we offer for cancer diseases, they may offer a 10%, a 30% difference in health outcomes and quality of life. And if we know that paying attention to these improves outcomes by 50%, gosh, that's something that we really need to switch focus to. And I think it may take some accrediting bodies to change the requirements of what we do as oncology professionals, as well as some reimbursement changes.

Dr. Leslie Hinyard: Wenora, do you have anything to add?

Wenora Johnson: I truly, really agree with what Krista was saying. And then when it comes to the part about it taking an army, I think this is where we are getting better because there are patient advocacy groups that are out there in the wings waiting to help so that the burdens and the load is a little bit lighter for everyone. So that patients who are experiencing these social determinants that are affecting their health can get the needed help. And so, this is where I'm asking for the continued collaboration between all groups in all of the space, all the way down to research. That's where I'm lending my voice to help in this area.

Krista Nelson: Wenora, thanks so much because we can't do it without the patient voice and I'm just so grateful that you and other advocacy groups are out there and we really have seen a shift of hearing the patient voice in everything that we're doing, and it's so important. When we think about cancer screening or reducing cancer by 50%, sometimes as a social worker, I feel a big weight of that thinking, gosh, a lot of our patients don't have a home or a way to get to screening. So, I think we do have to pay attention to addressing the most vulnerable patients until we can really make a mark to reduce cancer.

Dr. Leslie Hinyard: This conversation has been wonderful and the way that it really leads to this next idea of connecting these dots as far as what are some tips for patients and providers to help start these conversations. We know sometimes they can be challenging. So, do you have strategies or tools for how people can get started making sure that they feel empowered when they're in the room with their provider?

Wenora Johnson: Absolutely. If I can jump in, I have this immediate list of things that came to mind. And the first is basically healthcare providers when they are talking to their patients, speak at a slower pace so that the patients can take in and grasp what's being said to them so that they can respond back openly and how they feel. And how about just showing respect, understanding the patient's cultural needs and how they feel about their own care, and monitoring the body language? Sometimes when a patient, I've done this a million times, gone into my doctor's office and the first thing they say is, "Wenora, how are you doing today?" And I'm like, "Okay." And knowing that "okay" should be addressing that maybe I'm feeling heart palpitations or something like that. So maybe reading a little bit into my body language, having good and clear written instructions for your patients, avoiding jargon or complex medical terms, and using just language that patients can understand so that they feel comfortable in sharing maybe what's going on in their life and impacting their ability to get the care that they need. So those are some of my tips that are more geared toward the healthcare provider.

Dr. Leslie Hinyard: Thank you so much for sharing those. Krista, do you have any tools of the trade?

Krista Nelson: Yes, I think Wenora hit it on the head, it's really just pausing and connecting with the patient for a few moments before we go in with our agenda and really coming from a trauma-informed place of sitting at the same eye level as the patient, pausing and just checking in with them and maybe asking a question like, "What's important to you? Is there anything I should know about you before I recommend treatment for you? What's important to you?" I think really letting patients know they're not alone in this journey and that there is this whole team of people available to help. I don't think it has to be necessarily– Sometimes I think our patients feel most connected to the MA who rooms them or the scheduler that calls in. I get some of my best referrals from other members of the healthcare team. So, I think just checking in, those people have relationships over time and I think oncologists and providers, we have relationships with these patients over time. So, I really think getting to know what's important to them and embracing that and asking about that at each visit helps patients feel more connected, and that we do care and understand. There is this whole community of people hopefully around them that surrounds them and is impacted by this diagnosis; it's not just the person in the room.

Dr. Leslie Hinyard: Those are wonderful tools. Do either of you have any final thoughts you'd like to leave our listeners with?

Wenora Johnson: Absolutely. I'd love to share some of the things that keep me motivated. And some of that has always been my love of quotes. The one that I have that's my favorite, of course, is by Maya Angelou, which says, "People will forget what you said, people will forget what you did, but people will never forget how you made them feel." And so, it's often not what you say but how you say it that impacts people. It's often not what you do, but how you do it that influences people. And I know that personally, I'll never forget how my healthcare team continues to this very day to make me feel about my treatment for cancer. And as I undergo regular surveillance due to my Lynch Syndrome status, knowing they have my back and that I can communicate with them on any level makes it easier for me to get the assistance that I need, and then, in turn, as a patient advocate, make that need known throughout my community.

Dr. Leslie Hinyard: Thank you so much for sharing. Krista, did you have anything you'd like to leave our listeners with?

Krista Nelson: Yeah, I think for the healthcare teams out there, just really remembering that our most vulnerable patients and people with a lower socioeconomic position have worse health outcomes and higher mortality rates from cancer than anyone else. So, we really need to be paying attention to these nonclinical factors. I think they are clinical factors that impact health outcomes, and this will lessen the burden of cancer for everyone, including most importantly, that patient.

Dr. Leslie Hinyard: Thank you so much. I love your idea of reframing as clinical factors these Social Determinants of Health. I'm hoping that is where we end up. But today I wanted to thank both of you for joining us on this episode of ASCO's Social Determinants of Health and Cancer Care Podcast. Really appreciate you being here.

And I want to say thank you to our audience for listening. It's been a pleasure sharing this information with you all.

For more on the conversation of data gathering, please join us for the next episode where we talk to a panel of cancer care providers about the assessment of patient social needs. To keep up with the latest from Social Determinants of Health and Cancer Care Podcast, please click Subscribe so you never miss an episode. And let us know what you think about this series by leaving a review. Visit asco.org/equity for the latest resources, research, and more on equity, diversity, and inclusion in oncology.

RESOURCES

• ASCO Daily News Article: Integrating Social Care Into Cancer Care Delivery: Are We Ready?

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

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