Park the Parking: Patient and Caregiver Perspectives on Transportation Barriers in Cancer

Frustrations regarding the costs and difficulties with parking at hospitals is a common concern voiced by patients, families, and healthcare providers. Transportation barriers to receiving cancer care are incredibly common despite what appears to be relatively straightforward solutions. Dr. Chino welcomes two patient-centered health policy experts to discuss this: Dr. Arjun Gupta, MBBS, an Assistant Professor at the University of Minnesota; and Dr. Shakira Grant, MBBS, MSCR, the Founder & CEO of CROSS Global Research & Strategy.

Transcript

Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for JCO Oncology Practice. I'm Dr. Fumiko Chino, an assistant professor in radiation oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity.

Frustrations regarding the costs and difficulties with parking at hospitals are some of the most common concerns voiced by patients, families, and healthcare providers online. There is nary a topic where you'll find a more unified level of outrage. Transportation barriers to receiving cancer care are incredibly common, despite what appears to be a relatively straightforward solution—to parking costs, at least.

To discuss this, I'm excited to welcome two patient-centered health policy experts as guests today. Both have published work in JCO OP about transportation barriers.

Dr. Arjun Gupta, MBBS, is an assistant professor at the University of Minnesota. He is a gastrointestinal oncologist, a symptom management enthusiast, and a health services researcher. His research examines cancer care access and delivery, the cost of cancer care, and the hidden burdens imposed on and faced by people with cancer and their caregivers while receiving this care. His 2020 editorial, "Park the Parking," documented parking costs at the top US hospitals as a source of financial toxicity.

Dr. Shakira Grant, MBBS, MSCR, is the founder and CEO of CROSS Global Research and Strategy, a boutique consultancy focused on advancing equity-centered strategic solutions to complex healthcare challenges at the local, national, and global levels. She is the former health policy advisor to the US House of Representatives Ways and Means Health Subcommittee. Prior to that, she was an assistant professor at the University of North Carolina. Her qualitative analysis was published earlier this year and is called "Paying to Be a Patient in the Hospital and the Parking Lot: Patient-Caregiver Dyad Perspectives on Health-Related Transportation Access in Multiple Myeloma."

Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today.

Arjun and Shakira, it's exciting to speak with you today.

Dr. Arjun Gupta: Thank you. It's a joy to be here, Fumiko.

Dr. Shakira Grant: Thank you so much for having me also.

Dr. Fumiko Chino: Our specific topic today is transportation barriers to receiving optimal cancer care. This concern fits within the larger focus of addressing the social determinants of health, with the goal of improving access to high-quality cancer care for all. Research on health-related social risks and needs has proliferated in the last decade, and recent evaluations of food, housing, and transportation insecurity have expanded our knowledge on the barriers that some people face to receive care.

Arjun, do you mind starting us off with just a bit of background about why these issues matter for patients?

Dr. Arjun Gupta: Sure. So, just some background on social determinants of health. These are non-medical factors that are often at the community level that can have direct impacts on both health and health outcomes. So, these are all the issues that are associated with living and our daily lives: where we live, where we work, do we play, and what we play. All of these issues can, of course, impact what sort of medical conditions one might develop, but also the medical care that one might be able to receive.

And we think about someone who does have access to public transportation or does have access to a private vehicle, for example, or someone who is a daily wage earner or an hourly wage earner, or someone who lives next to a toxic wasteland and is exposed to chemicals. So, all of these factors can, of course, influence our health risks. And as one can imagine, all of these social determinants of health can lead to health risks or social risks.

And so, my real interest in this topic came about when I was a first-year oncology fellow. So much of our training in residency is on the inpatient side. But when we had our own continuity clinic in oncology during my first year of fellowship is when I realized the importance of parking and transportation for the first time. When a patient who was receiving FOLFOX chemotherapy for colon cancer, I asked them if they wanted to get blood work a couple of days before chemotherapy so that they wouldn't have to wait for the blood work to result on the day of chemotherapy, and they very passionately said, "Oh, of course not. I only want to come in one day because the parking costs $12, and Christmas is coming up, and I need to buy presents for my grandkids." And that really, really struck me.

I remember reaching out to you, Fumiko, at that time. We were junior investigators and launching our careers in oncology on what is going on and why is this real. And I think we'd done some work parallelly to highlight how these major cancer centers were charging obscene amounts for parking, which for an individual visit may seem very small, but of course, cumulatively can be large amounts. And also the fact of the nickel-and-diming that comes in for these very, very vulnerable patients and care partners.

And my interests in these transportation and parking costs and barriers have evolved since our research group has been working on time toxicity. So, over the last couple of years, this concept of the time burdens of cancer care has evolved. And initially, we were largely focusing on the amount of time spent in medical appointments. So, you go up, and it takes so long. And in qualitative interviews, patients brought up that even for simple blood draws, "I'm actually spending three, four hours out of the home." So, we actually looked at this formally because our oncology discipline didn't believe this data. They kept thinking a blood draw is 10 minutes tops; you just ask a patient to come in.

At our cancer center, patients get a radio frequency ID badge when they enter the clinic. This is to track them within the cancer center. So, using that radio frequency ID badge data and the average driving time through their home zip code, we found that actually, even a simple blood draw was taking people more than 3 hours, home to home. And I actually made a couple of residents walk from the parking garage to the entrance of the cancer center and found that it was a median of 7 minutes one way. Now, remember, these are mostly young adults in their 20s, not walking in the Minnesota snow. So, you can imagine someone who's an older adult, at risk of slipping, walking much slower. So, all of this to say, these are major, major issues that patients and care partners face, and I was very excited to read Shakira's work on this topic.

Dr. Fumiko Chino: I love how you walked us through the granular of the patient interaction that then drove you to research this type of study because, initially, you were trying to be very patient-centered in your approach, which is, "Let me separate the lab from the visit so we can save you some time." But what they told you was that, "Hey, it actually costs me more money, and it may not actually save me any time." And I think that dovetails really nicely into thinking about the study at hand, the most recent study. And Shakira, your study on transportation barriers really just came out, and it highlights the voice of the patients and the caregivers on the lived experience of cancer treatment. And one patient from your study specifically said that their travel to receive cancer care was not only wear and tear on the cars but wear and tear on the body as well. So that echoes what Arjun just said. And I think that quote really nicely highlights that it's the costs, it's the time, it's the stamina required to navigate the hospital. These all contribute to the burdens that our patients and their families carry.

Do you mind, Shakira, giving me a brief overview about why you did this work and what you found?

Dr. Shakira Grant: Sure. So, I would say to dovetail on a lot of what Arjun said, this came also what I was seeing firsthand in the clinical practice. And at the time when I was directly involved in patient care, my population was caring for older adults, primarily with multiple myeloma. My background is as a geriatric oncologist, and so by and large, that meant that most of my patients are over the age of 65. But apart from age, they're also battling other things such as disability and other chronic conditions that impact their functional ability.

And so, I kept hearing stories over and over, not only from patients, but I recognized there was an integral part that is often overlooked in clinical care, and that is the voice and the role that caregivers play, especially when we're dealing with older adults who may not have the independence to drive a car themselves to get to the cancer center because it might be disability, it might be other chronic conditions that impair their ability to operate a vehicle. And they kept talking about the same issues around accessibility of the parking structures, the time it takes for them to drive from their homes, especially when they're having their chemotherapies or other cancer therapies, and that may impact them by not feeling physically well and then needing to still get to the cancer center to see a physician or to receive additional treatment.

And then on top of that, similarly, I heard the concerns about parking because parking was not free at the cancer center for patients. And so, this is an hourly rate, and the longer you're there, you pay more money. And for many of these older adults, they're already on a fixed income, and so it becomes very difficult for them. Even though for someone who's working and has a nice buffer of income, they may be able to readily afford $12 or $15 to pay to park every time you come to the cancer center. But if you're on a fixed income, that becomes more difficult. And so that was one of the real driving reasons behind why I wanted to do this type of research in this particular area.

Dr. Fumiko Chino: This work from your team is really an excellent example of patient-centered research and explicitly examining and prioritizing the voice of the patient and the caregiver, their experiences as an avenue to help clinicians and researchers and policymakers understand where care gaps exist and how we can be doing better. And I'd love to hear from each of you why you specifically feel like this type of research is important - I know you've already mentioned some of it - and the range of patient-centered research that you have done in the past or you hope to do in the future. What is the unique knowledge that this research allows us to gain beyond some of the standard research paradigms?

Dr. Shakira Grant: I think patient-centered research is really critical, not just in helping us to set the stage as clinicians, as researchers, but it becomes important for policymakers because oftentimes, we hear the stories, and the stories are the things that are most powerful. They speak to the emotional need of people, and that in itself can be very powerful, especially when you're trying to interact with policymakers about why this particular issue is important. It is easier to do that when you have a story, when you can put a face to what is actually happening. So, it doesn't seem as abstract if we're just talking about quantitative data where we're analyzing and putting out a lot of statistics. We're talking about this patient, their caregiver, their lived experience. These are the real barriers.

So, I really appreciate doing patient-centered research because it centers the voices, the lived experiences, and that just enriches the experience, and it also gives that emotional and psychological appeal that is sometimes necessary to get the attention of policymakers and other legislators.

Dr. Arjun Gupta: Absolutely. And to follow up on that, I think Shakira's point about telling stories is very important, especially these days. We've seen so much misinformation. And I think for me personally, as a researcher, learning how to do mixed-methods work, especially qualitative work, to be able to integrate stories into all of these quantitative data elements that we have is extremely important.

To that point, I will say that when starting to research parking costs, the most impactful blog that I read on this topic was about parents whose newborns were in the neonatal ICU or the NICU. And it was such a beautifully written blog, asking someone to imagine their biological child in the neonatal ICU. And if the child had two parents, then each of the parents trying to balance work and coming to the NICU and having to pay parking fees twice a day. And to have to do that day after day and week after week and month after month, I think it's very important to share that part of the story and the horror along with that element of, "Okay, it cost $10 each time."

And so, when I think about patient-centered research and how I best integrate my skills and interest, I think about symptom intervention trials. So, how do we make people feel physically better through things like medical cannabis and access through that? And the other big thing is exploring and intervening on the financial toxicity of care, the time toxicity of care, and the logistic toxicity of care.

So, Fumiko, you've been such a champion for financial toxicity over the years. And just to go back in history a little bit, before Dr. Zafar coined the term "financial toxicity" 10-15 years ago, being bankrupt from cancer care was just something that happened. It sucks, it happens. But since then, it's been named, it's been shamed, and it's been intervened upon. And that's my hope with the time toxicity field now over the last two, three years.

And the latest thing that our group has sort of worked on while studying time toxicity is that it's not just the time outside the home, but it's also all the paperwork and administrative burden that goes along with it. And so, our team is currently trying to provide patients with proactive legal support to actually help with medical debt, insurance denials, things like that.

Dr. Fumiko Chino: I like that full scope of the patient experience when thinking about cancer care. And one thing that struck me when I thought about these studies about parking costs is that when we see someone in our clinic, you know, when we open the door and we say, "Hello," they've already had to deal with all of these transportation barriers. They've had to navigate the parking deck and walk over. And so, when we're seeing them, they've already had some amount of small trauma, sometimes large trauma, related to just trying to get in the door. And I think that really nicely encapsulates the fact that there is a larger picture that our patients are experiencing that is not just me talking to my patient and outlining a treatment plan.

And one thing I think I heard kind of from both of you is that with these patient stories, you actually get ideas for research that you may not have actually thought of on your own. Again, your patient saying that they couldn't afford Christmas presents is such a compelling anchor for why what we do matters. And when we think about trying to explore things like quality of life or frailty, or the fact that, for example, the cost of a walker may actually be outside of someone's ability to pay, and they can't even afford their durable medical equipment. These are all part of the larger care experience for a lot of our patients.

Now, one aspect about this most recent JCO OP study that I particularly loved was the inclusion of the caregiver as an essential member of the healthcare team. Selfishly, perhaps, as a prior cancer caregiver myself, now a cancer widow, I find the caregiver voice to be really underappreciated and understudied. Shakira, do you mind sharing why you felt like this was really important to include caregivers on this study?

Dr. Shakira Grant: Sure. So, it came exactly out of the reason that you mentioned. Oftentimes when we think about research, especially within the cancer space, a lot of it is centered on the patient experience. And what I've learned through clinical practice and even working in the health policy space is that cancer is a disease that not only impacts the patient but it impacts the family around them, and that bleeds into financial issues and whether or not someone experiences financial toxicity. Now, especially in the health policy world, we hear a lot about medical debt and thinking about how that then gets passed on to other family members. So, it was critical for me and our team to really think about the caregiver because we saw them as being a central part of the cancer journey or experience. We wanted to capture their voices because so often their voices, their experiences are not taken into consideration.

And I think when it's coming to think about something like transportation in particular, it's key to remember that transportation is a core determinant of whether or not people are going to be able to access healthcare. And when you are older and you have disability and you're not able to operate a vehicle, that's one aspect of it. But then there's the financial piece of the transportation, which is paying for costs to uptake your vehicle, insurance costs, parking costs, and then the other costs that happen once you actually reach the cancer center. So, it was important for us to not only understand this from the patient perspective, but we do recognize, especially with older adult caregivers, they too are taking time off from work. That means lost wages potentially for them in order to drive their caregiver to the care recipient to the cancer center. And that can have a downstream impact on them. So, it's important to amplify their voices whenever we are talking about this type of patient-centered, or should I say, patient and caregiver or patient-care partner focused research.

Dr. Fumiko Chino: Now, Arjun, I saw that you recently published a piece in JAMA Network Open on time toxicity that similarly had qualitative interviews of patients, caregivers, and actually also clinicians. Can you also speak to the importance of including caregivers in research?

Dr. Arjun Gupta: Absolutely. Before that, just I want to acknowledge that my own clinical care has evolved over time. I think I was much more immature earlier. But in my earlier years of clinical practice, it was largely patient-focused. And over time, I saw firsthand the importance of having an engaged care partner if I wanted the patient to do well. So, if our primary allegiance is to the patient, I initially used to look at it as, "I need the care partner to be on my side so that if we say the neutrophil count is 0.1 and we need to come to the emergency department, we need the care partner to be able to drive the patient."

But over time, as I matured, the care partner became a distinct human being for me. And someone put it very beautifully that the care partner's suffering, unfortunately, often lives on even after the patient's death. And in my clinical space, which is often advanced GI cancers, that's not uncommon when the median survival for the patient may be one year or so on average. And so that's where this was motivated from. And when looking at time burdens faced by patients and their loved ones, a couple of themes came up prominently. Patients often brought up themselves that, "You know, my time is precious and so much of it is used up, but it's really my loved one who's suffering." They referred to their loved one's time loss as collateral damage. They often described it as, "I am the ball that's not allowed to drop." So, my care partner is juggling four different balls, and I'm the only one that's not allowed to drop. So, all of my care partner's balls are dropping.

And one more point I'd like to raise is we often think about a care partner in the singular. So, there's an index or a main care partner. But one of the other interesting things was how often the entire network of friends and family around that patient and the index care partner were affected, which was likened to this domino effect or a rippling effect.

And so, for all of our work, I think if we're talking about the patient, I think it's absolutely unfair and not applicable if we don't consider the care partner alongside patients.

Dr. Fumiko Chino: I love what each of you have highlighted: that this is an evolving paradigm of broadening the scope of what we need to focus on. And it kind of shocks me that this is a new concept, that suddenly, "Oh my gosh, the caregiver and the caregiver team actually matter." It's sort of like how we thought of quality of life as, "Oh my gosh, suddenly quality of life matters." It used to be just, "Oh, well, you're alive, so good luck with that," or "Survivorship matters." And so again, part of evolving research to be better is to really think about the full picture for our patients, and that includes quality of life and care teams and survivorship and end-of-life care.

Now, switching gears a little bit, Shakira, I know you're coming directly off of time within the federal government, working on health policy in the House Ways and Means Committee. Can you briefly speak to your experiences in DC and your work trying to bring some of these issues to the eyes and ears of legislators and how to prioritize national solutions to the affordability healthcare crisis?

Dr. Shakira Grant: Sure. So, in DC, my work on Ways and Means under our jurisdiction largely focused on Medicare. And with Medicare being one of the largest federal insurers, with just over 66 million, I believe, as of 2024, enrolled in Medicare plans, it really brought to light a lot of the complexities at play when it comes to thinking about the issues that the older adult population and those who qualify for Medicare based on disability status could face. And so that ran the range from thinking about health equity in everything that we did, which broadly encompasses thinking about social determinants of health such as transportation, as we're discussing, to making drugs more affordable for our older adults, as well as thinking about how do we safely bring innovative technologies and new therapies to the older adult population or Medicare beneficiary space, while ensuring that we are able to be focused on containing costs as much as possible - so, thinking about financial payment models and reimbursement.

When it comes to raising these issues, I would say from my experience in DC, I believe that regardless of which side of the aisle you sit, the health of the American people is always at the forefront of everyone, of every legislator. There's always ways to think about how do we improve the health of our communities, of the people that they are elected to serve. The way to do that, however, may look different depending on which side of the aisle you sit on. But I would say efforts that could be done that will help in this space are through the advocacy, especially through the work that ASCO continues to do, especially as it relates to drug pricing and addressing the drug shortages, raising issues such as affordability, healthcare access. Those voices together are really powerful and appeal to the broader legislative landscape to understand why this is so important, especially for your patient populations.

The other aspect of this is also related to just thinking about future changes as it relates to the current political climate and a lot of the federal actions that have been taken. I think overall, there still needs to be a push to make healthcare a lot more affordable. In addition to addressing the affordability issues of healthcare, there's also the access issues and ensuring that the 21 million people who have sought health insurance through the marketplace, that they continue to be protected and that they can still continue to have access to health insurance.

And then more recently, we've seen a lot of discussion around what is happening with Medicaid, and it would be remiss of me not to mention this because of the proposed $880 billion (with a B) in cuts that is proposed to this program. And so Medicaid is a key pillar. It provides insurance for those who are oftentimes the most vulnerable. It is one of the federal programs that actually addresses social determinants of health such as transportation by actually providing and covering transportation for its beneficiaries, as well as addressing other things such as food insecurity, housing insecurity. And so it's really critical when you think about framing social determinants of health, framing access to care, to think about Medicaid especially and proposed cuts and what that would mean for the most vulnerable among us in terms of being able to access the care that they need, in addition to the other programs that I mentioned.

Dr. Fumiko Chino: Now, Arjun, I know with some concerns about federal cuts to Medicare, Medicaid, there's been some idea that maybe there's a shift of focus towards state, institutional, other organizational commitments to try to fill the gap that maybe federal dollars are departing from. Do you have any thoughts about what we should be doing within our clinics, within our institutions, within our societies?

Dr. Arjun Gupta: Yes, I think just speaking at an individual clinician or health system level, especially as it pertains to transportation and parking specifically. So, what can I or we do in clinic tomorrow? We've actually been doing some qualitative interviews on this, on how to make people's life easier. And some of the things that patients and care partners have said are actually very, very simple. One of the first things is, "I wish my oncology care team was honest with me. We know you're well-intentioned. I know you're working in a broken system. But I was told, 'Oh, it's a quick infusion,' and then I was set up for a three-hour infusion, and then it ended up taking five hours. And I understand that you're all working hard, but just tell us if it's going to be five hours. And I can then plan my day and arrange childcare and things like that." And so, I just think being honest and vulnerable with our patients is super duper important.

The other thing is things like, "Do we really need to make the patient, plus minus their care partner, come in on a given day?" So, trying to coordinate care better. And one of the more specific solutions for that is people have suggested having a designated care coordinator or scheduler with them, a one-stop shop for scheduling, which cuts down so much of this time that's spent scheduling but also avoiding extra visits. So, while these longer-term policy issues are implemented and leveraged, I think there's things we can do every day. Is that CT scan, does it need to be done, or can it be on the same day? These can make massive, massive differences for our patients.

Dr. Fumiko Chino: Shakira, any last thoughts as we wrap up this podcast?

Dr. Shakira Grant: I just wanted to add to that because one of the key things I would sum up our study in showing is that, again, transportation is a core determinant of whether people are able to access healthcare. And we found, especially that older patients, those with disabilities, low income, and living in remote areas, these are the people who are facing the most significant challenges when it comes to accessing care because of transportation. And so, when you think about interventions, an approach could be, rather than thinking about population-level approaches that incorporate everyone, rather, it may be thinking about who are the high-risk groups amongst the people that are seen within your respective healthcare system, and then targeting interventions at the individual level as well as the healthcare system level, and then building up to thinking about community-level interventions such as rideshares, investing and appealing to policymakers.

But I would say we often think about policy changes as needed to really make a difference, but it really starts at the individual level, and you can then use that to build up to the policy because in order to develop a really great policy, it takes several years, sometimes up to a decade or more. And in the meantime, what we can be doing as clinicians, researchers, consultants, are focusing on the people within our immediate ecosystem and seeing how we can build strategic partnerships to address the issues that they're facing at those individual, interpersonal, healthcare system levels, and then leveraging that to build up robust policies.

Dr. Fumiko Chino: I love it. It's this idea of not losing the forest for the trees, but also taking the time and care for each individual patient in front of us. And it's a dual goal.

Arjun, any last thoughts from you?

Dr. Arjun Gupta: Just, I read a very interesting quote which I love. Someone said - I haven't found who said this, but they're clearly very smart - they said that, “With all of this AI and stuff, the biggest technological advance will still be more time with the patient.” And I think in some of our work on time toxicity, clinicians, which is all sorts of people in healthcare, have persistently said, "I just wish I had more time." And so, I think as we think of frontline solutions, I think we need to respect our own time to be able to respect patients' and care partners' time.

Dr. Fumiko Chino: Well, thank you both for this wonderful conversation today. Many thanks to Dr. Arjun Gupta and Dr. Shakira Grant, as well as our listeners for your time today. You will find the links to the papers that we discussed in the transcript of this episode. If you value the insights that you hear on the JCO OP Put Into Practice podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts. I hope you'll join us next month for Put Into Practice's next episode, and until then, I encourage you to continue advocating for your patients, from parking vouchers to health policy solutions.

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.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

 

 

Conflicts of Interest

 

Fumiko Chino

Consulting or Advisory Role

Company: Institute for Value Based Medicine

 

Research Funding

Company: Merck

 

Shakira Grant

No relationships to disclose 

 

Arjun Gupta

Employment

Company: Genentech/Roche

Recipient: An Immediate Family Member