Knudsen, Flomenberg: Eliminate digital health disparities; we don’t want telemedicine to be for the one-percenters

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Karen E. Knudsen, PhD, MBA

Karen E. Knudsen, PhD, MBA

Executive vice president of oncology services, Jefferson Health; Enterprise director, Sidney Kimmel Cancer Center; Hillary Koprowski Professor and Chair, Department of Cancer Biology, Thomas Jefferson University
Chair, Cancer Biology
Neal Flomenberg, MD

Neal Flomenberg, MD

Professor and chair, Department of Medical Oncology, Director, Bone and Marrow Transplant Program, Deputy director, Sidney Kimmel Cancer Center, Thomas Jefferson University

This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.

The Sidney Kimmel Cancer Center at Thomas Jefferson University has been developing a scalable telehealth program long before the spread of SARS-CoV-2 in the United States.

“Jefferson Health is a 14-hospital system across two states. It’s another reason why telehealth is so important for us,” said Karen Knudsen, executive vice president of oncology services at Jefferson Health and enterprise director of Sidney Kimmel Cancer Center. “We have cancer care clustered into what we call ‘SKCC advanced care hubs’ across four regions, each with subspecialists, clinical trials, and advanced care options.”

Jefferson’s telehealth program was set up at a time when there were no reimbursement incentives for telemedicine.

“Being one of the first in was critical, and allowed us to scale up in a way that I’m not sure I would call effortless, but it’s been relatively straightforward to ramp up in times of urgency, because the providers already have the core competencies needed,” Knudsen said to The Cancer Letter. “The patients already have the app, and all the pieces were in place.”

Since the outbreak, the cancer center has moved much of its patient visits online.

“Last week, March 16 through the 21, we completed 156 telehealth visits; March 23 to April 3, we have 234 that are scheduled,” said Neal Flomenberg, chair of the Department of Medical Oncology, director of the Blood and Marrow Transplant Program, and deputy director of the Sidney Kimmel Cancer Center at Jefferson.

“So, you can see that we’ve really, really ramped up, and that’s not been painless, but manageable,” Flomenberg said to The Cancer Letter. “And again, for places that didn’t get started with telehealth before the pandemic, it’s going to be obviously a much tougher nut to crack.”

Pennsylvania Gov. Tom Wolf had issued a shutdown order for the entire state, effective March 17, closing all nonessential government offices and businesses. The protective measures, however, also meant that patients with cancer—who are at risk for developing severe complications if infected by the novel coronavirus—require nonstop connectivity if they are to reduce exposure by staying at home.

While Jefferson’s oncologists are licensed in multiple states—Pennsylvania, New Jersey, and Delaware—other providers elsewhere may not be able to reach their patients or get paid.

“The primary barrier for us, more than anything else, has either been where can you go based on your insurance, and sometimes that’s state insurance, and where is the physician licensed,” Flomenberg said. “You can’t be licensed in 50 states.

“In these unusual days I’ve just said to people, ‘Try to worry about taking care of the patients, primarily, and let’s worry about the rules and regulations secondarily.’ It’s a crisis. If people are ever going to understand, this is the time. But in a more steady-state time, those kinds of things do get a little bit more in the way and are a challenge and a barrier.”

A two-tier system that prioritizes patients who need specialty care may be one strategy for resolving the issues of access to telehealth, Flomenberg said.

“We might want to really think about perhaps a two-tiered system, in terms of the sorts of things that are dealt in a primary care setting, and the things that are dealt with in a specialty care setting, and perhaps allow a little bit more flexibility for those things that require more complex, more unique care, more of the kinds of things that are likely to occur at a large center,” Flomenberg said.

“You think about people in rural environments. That would be empowering for them to be able to at least get some initial consultation with less of a geographic bias, less of an ordeal in terms of dragging in to a larger center.”

Cancer centers with established telehealth programs are recognizing the value and the importance of the platform, while others are rapidly expanding digital strategies, Knudsen said.

“We will have much to learn from each other once COVID is behind us, and I personally predict that we will see telehealth more deeply embedded into the cancer continuum,” Knudsen said. “In my opinion, increasing access to quality, patient-centric, specialized care that does not induce a cancer disparity should be the goal. We don’t want telemedicine to be for the one-percenters.

“In short, the urgent need to scale was readily achievable for cancer care. If we weren’t already a few years in, it would be a staggeringly challenging time to get telehealth up and running. If we hadn’t laid out that platform, I can’t imagine where we’d be right now in the middle of the COVID-19 crisis.”

Knudsen and Flomenberg spoke with Matthew Ong, associate editor of The Cancer Letter.

Matthew Ong: When was Jefferson’s telehealth program set up, and how is it enabling your physicians to care for their patients at a time like this?

Karen Knudsen: The telehealth initiative was actually a presidential initiative of Stephen Klasko, our president and CEO, who brought on Judd [Hollander, associate dean for strategic health initiatives at Sidney Kimmel Medical College] and team. He was committed to skating where the puck would be and introduced telehealth into our clinical care priorities. He encouraged all of the service lines and chairs to get ahead of that curve, and the Sidney Kimmel Cancer Center at Jefferson Health heard the call.

To be specific, he charged all of the providers to conduct telehealth visits well before there was reimbursement—years ago. And to his credit, Neal and the SKCC medical oncologists were some of the first to jump in.

Enthusiasm was high across the cancer service line, but Neal really set the standard for laying down expectation in the department. Our radiation oncology department headed by Adam Dicker and all our surgical oncology-intensive departments are also frequent users, and this has been to the uniform benefit of SKCC patients. We are fortunate at SKCC to have so many leaders who were ready to embrace telehealth.

Neal Flomenberg: I would emphasize Steve being out there, way in front, before this was a popular idea and trying to, as Karen said, anticipate where the puck was going to be. So, they set targets for us, for all the departments, in terms of trying to use it. They empowered us to be creative in different ways as to how the technology might get used.

Karen talked about us getting out in front. I think the one thing that we may have done a little bit more than others relates to the fact that there is a licensing requirement. The visit is considered to take place where the patient is as opposed to where the provider is.

We made sure that all of our docs were going to be licensed in Pennsylvania, New Jersey and Delaware, which is where the bulk of our patients come from, even though, originally, they were only going to physically see patients in Pennsylvania.

Now, we have part of the Jefferson Enterprise in New Jersey. So, there is a group that is going to physically see patients there, but we’re all licensed in the three states. We’ve tried in the past to be creative about how we use this.

As an example of creative use, consider a patient discharged from the hospital. Before they see their outpatient physician, one of the members of the inpatient care team would reach out, typically a nurse practitioner, and have an intermediate visit before they get to their primary care team, just to make sure that everything’s doing okay. That’s been a fairly popular use, as an example. It’s something that’s a little bit different.

As you might anticipate, there were some physicians that were gung-ho in terms of new technology and some that were more tried and true, if you will, and that was also true in the patient end of things. I think that this particular experience is going to galvanize this like never before.

If my own practice is any experience—and we are trying to pull a few numbers together—the vast majority of patients that I’m interacting with now, or telehealth with, a rare patient who absolutely must come in either because they’re under treatment or there’s just something that can’t otherwise be done. Those few come in for a physical rather than virtual visit, whereas the majority of people are being seen by telehealth.

So, just like the country may never quite be the same in terms of who’s traveling into the office each day and who’s working at home, I don’t think health care is going to be the same, at least for places like us that have been early adopters of telehealth.

KK: Being one of the first in was critical, and allowed us to scale up in a way that I’m not sure I would call effortless, but it’s been relatively straightforward to ramp up in times of urgency, because the providers already have the core competencies needed. The patients already have the app, and all the pieces were in place.

NF: In terms of just our outpatient visits, not some of these other efforts where we were trying to be creative regarding uses of telehealth that we had talked about, we were probably doing 35 to 40 a month in terms of just those standard visits. The baseline I have is January of this year. Last week, March 16 through the 21, we completed 156 telehealth visits; March 23 to April 3, we have 234 that are scheduled.

So, you can see that we’ve really, really ramped up, and that’s not been painless, but manageable. And again, for places that didn’t get started with telehealth before the pandemic, it’s going to be obviously a much tougher nut to crack.

KK: In short, the urgent need to scale was readily achievable for cancer care. If we weren’t already a few years in, it would be a staggeringly challenging time to get telehealth up and running.

It is also important to note that while many patients already had the technology, we have a very diverse catchment area, within many areas we have identified low digital literacy. As such, SKCC developed specialized strategies for this at-risk group to also access telehealth. As a Center we are committed to avoiding creation of yet another care disparity, by ensuring that telehealth is for everyone.

How did the telehealth program help you prepare for a situation like COVID-19? But also, the flip side is, what did the program not prepare you for in a pandemic like this?

KK: We were more prepared in that the providers already had the competency and the discipline for understanding how to conduct a telehealth visit, working within the confines of what can and can’t be achieved, and predicting what patients would most benefit.

For example, for a patient who has completed treatment and needs a followup to discuss labs or imaging, there’s no reason to haul that person into the clinic for 30 minutes to tell them that their test results look fine. We already adopted that mindset years ago, and this is part of our move toward cancer patient-centricity. The mission of SKCC is to improve the lives of cancer patients and their families, and appropriate use of telehealth is a major step toward that end.

Having operated in that model, the providers had confidence, the patients understood and enjoy the process, and we’ve had time to ensure that the quality of the telehealth visit matches that of an in-person visit. Of course, there are follow-up patients that you do need to lay hands on, but the providers have already completed that learning curve.

NF: I think that having eased into it, you continue to learn the things where you can assess the patient. And really, there are a lot of things that you can pick up. You can’t listen to somebody’s lungs, because you have no stethoscope, but you can get a pretty good sense as to are they having any respiratory distress, or those sorts of issues from observing them and talking to them.

And I think those of us that have done it for a while have developed a sense that there’s more and more that we can actually assess in these patients if we just do more of it. If you talk to Judd, he’s the guy that’s got all the tricks who can show how complete an exam you can actually manage in terms of the telehealth visit. So, I think that that’s really important.

I think that we’re trying. It’s not perfect, but we’re trying to limit the number of people that come in to primarily those that are in the midst of active treatment, which brings them to the infusion center, or to the institution for a different reason. Then, we can see them in addition that day if they’re due for a visit in and around this time.

Otherwise, if they don’t have to come here, if there’s not a compelling reason, we’re trying to keep them home and keep them safe.

KK: A second type of visit which is highly valued in our center occurs between the patient and social worker—physician dyad teams, which can play such an important role in cancer care. Emotions are running high.

People are worried. Having psychosocial support—even if delivered by telehealth—is immensely impactful. We’re actually on the precipice of launching research studies in this space to assess the overall results from both the patient and the provider perspective. This is a major priority moving forward.

NF: And let’s be honest, there’s a certain element of keeping the staff calm, too, and the providers. By dropping the number of exposures, everybody can be more comfortable. While we are primarily focused on the patients, people are people, anxieties are high, and this basically says it’s better for all of us, both sides of the table.

I’m hearing that telehealth is a capability few health systems have. And you seem to be kind of saying that as well. What is it like at other places? Is Jefferson’s telehealth program unique among, say, cancer centers?

KK: I’m honestly not sure if we have an overall view of what the capabilities are at other centers, and there remains much room for us to share experiences and best practices. This is something that I hope can be discussed through [the Association of American Cancer Institutes].

The AACI Slack channel was launched just last week so that the centers can have a place to rapidly share new ideas during the COVID crisis. Chatter about the use of telemedicine has only just begun.

What is already clear is that those centers with pre-existing telehealth programs are recognizing the value and the importance of the platform, and others are rapidly expanding digital strategies. We will have much to learn from each other once COVID is behind us, and I personally predict that we will see telehealth more deeply embedded into the cancer continuum.

You were talking about patient access to telehealth and how Jefferson is being accommodating of different levels of digital literacy. How are you closing the digital divide and helping ensure that all kinds of patients are able to reach Jefferson?

KK: We are very thankful to have our population science and social work teams addressing this issue together. Greg Garber, who is our head of oncology support services (and one of the world’s finest people), is deeply committed to something he calls “avoidance of creating new care disparities.” Especially in Philadelphia, that’s just so important.

Interestingly, the disparity for telehealth begins with email, as one of the things that you need in order to do a telehealth visit is an email address. Our research teams found that across our highly varied demographic most people actually had a smartphone, but they weren’t using it like a smartphone—they primarily use it for having a phone conversation or a text message, but not for email.

In order to get on a HIPAA-compliant platform for telehealth, an email address is generally needed. So, what do you do about patients who don’t email, or can’t download the app? This is something that Greg and team really did a great job handling, essentially by converting themselves temporarily into tech support.

The team uses whatever format needed—telephone calls, FaceTime, etc. to help guide the patient to set up an email account, download the app, and walk through a test run for patients in need of a telehealth visit. It all comes down to Gmail.

NF: I think Karen summarized it pretty well. The social services guys really are committed to not allowing this to become a disparity.

KK: And that’s really key for us. Jefferson Health is a 14-hospital system across two states. It’s another reason why telehealth is so important for us. We have cancer care clustered into what we call “SKCC advanced care hubs” across four regions, each with subspecialists, clinical trials, and advanced care options.

There are such different demographics in each of the regions serviced by the advanced care hubs, that the commitment that Greg and Neal have put forward to protect against creating new cancer disparities has been critical. That guiding principle permeates through every activity including telehealth. I’m really thankful for the team effort.

That’s great. Can we take a moment and talk about systemic barriers to telehealth? Why is the telehealth ecosystem sparsely developed, with many pieces that don’t interlock efficiently?

NF: That’s where, again, we’ve at least tried to take the licensing issue out. That’s not the complete story. I don’t want this to become a dominant theme. Obviously, each state is to some extent worried about the state’s well-being.

Each state typically has some outstanding institutions, and they encourage care to stay within the state, the family, etc., but sometimes that does not work out geographically or for other reasons.The primary barrier for us, more than anything else, has either been where can you go based on your insurance, and sometimes that’s state insurance, and where is the physician licensed. The licensing thing is going away. It’s more, where does your insurance—and that may be Medicare, Medicaid—where does that allow you to go?

KK: We talked about the fact that President Klasko, our CEO, made telehealth his presidential initiative years ago and said, “I know there’s no reimbursement for it,” at least at that time, “but I want you guys to do it.” SKCC doubled down through monetary investment and time investment—in the licensing of all of the medical oncologists.

NF: So, we do these three states where the biggest influx of patients is going to be. But you can imagine, we might pick up some patients in Maryland. We might pick up some patients from New York. And we can’t have everybody licensed everywhere. We have some specialty programs. Our uveal melanoma program is one that comes to mind that really pulls patients in from all over the country and beyond.

You can’t be licensed in 50 states. In these unusual days I’ve just said to people, “Try to worry about taking care of the patients, primarily, and let’s worry about the rules and regulations secondarily.” It’s a crisis. If people are ever going to understand, this is the time. But in a more steady-state time, those kinds of things do get a little bit more in the way and are a challenge and a barrier.

KK: I agree. How can we as a nation and we as a discipline ensure that patients have access to quality care through digital strategies like telehealth? I expect this to be an important question moving forward.

NF: And right now, we certainly don’t want people getting on planes and flying around. We want them to stay close to the home. So, we’ve quietly said, “Again, put the patient first.” I’m worried about that, primarily. But in the more steady-state time, this is a bigger issue.

What are some solutions—thinking from a 30,000-foot level—for making this work? You’ve talked about physician licensing. You’ve got Medicare versus Medicaid versus private payers, different level levels of reimbursement, different state laws. When we get to, as you say, a steady-state time, where would one start?

KK: Judd spoke to reimbursement issues, which loom large. In my opinion, increasing access to quality, patient-centric, specialized care that does not induce a cancer disparity should be the goal. We don’t want telemedicine to be for the one percenters.

NF: It’s an interesting question. We license physicians by state. You want to have some control. You want to have a high common denominator, maybe not the highest. You want quality, but you don’t want to set an impossible bar either.

So, obviously, primary care is something that people should get close to home. But, you know, we might want to really think about perhaps a two-tiered system, in terms of the sorts of things that are dealt in a primary care setting, and the things that are dealt with in a specialty care setting, and perhaps allow a little bit more flexibility for those things that require more complex, more unique care, more of the kinds of things that are likely to occur at a large center.

You think about people in rural environments. That would be empowering for them to be able to at least get some initial consultation with less of a geographic bias, less of an ordeal in terms of dragging in to a larger center.

So, I can’t say that I’d really thought about that question intensively. That’s a knee jerk reaction, but that might be the kind of thing that would satisfy both.

KK: I think we all agree that health care should be more patient-centric and easier to navigate. Telehealth is destined to be a key part of the journey toward this end. Patients want better connectivity and more convenience.

At some level, we are the perfect test case at Jefferson, because all of us (~33,000 employees) have ready access to telemedicine. The vast majority of us, across ranks and sites of care, have our telehealth app, JeffConnect, on our phone.

Before any of us think about showing up in the Emergency Department, we would use JeffConnect to do a quick telehealth visit. We see this as the wave forward.

We’re really thankful to Jefferson and Judd’s group for blazing this trail—and for allowing us to be at the ready in this surreal situation. If we hadn’t laid out that platform, I can’t imagine where we’d be right now in the middle of the COVID-19 crisis. The number of cancer patients who were safely seen at home instead of in the clinic is growing rapidly, thus easing the mind of both patients and their caregivers.

NF: We had four times as many last week, last week, as in the whole month of January and more scheduled this week.

Did we miss anything?

KK: I hope this is a call to action for the health care systems, but also for CMS and the payers to really get behind embracing telehealth for cancer patients, and to ease restrictions where possible.

Just like the country may never quite be the same in terms of who’s traveling into the office each day and who’s working at home, I don’t think health care is going to be the same, at least for places like us that have been early adopters of telehealth. 

Neal Flomenberg 

NF: I’ll always slightly editorialize. I think this is really important to do well. If you think about the fact that not all electronic medical records talk to each other particularly well, I think that we’re headed toward a time when people can expect to sit down in front of their computer, or with their phone or with their tablet, and to do a lot of their health care remotely.

We need to do a better job of making sure that, 10 years from now, it’s a really nice, single cohesive system, as opposed to a myriad of incompatible systems that are patched together, which is what EMRs are now.

So, hopefully, this will be a call to action that we can evolve some national standards and really do this right, so that any patient can sit down at their computer with a single app and access whoever they need.

Matthew Bin Han Ong
Matthew Bin Han Ong
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