The Patient's Voice Matters, but What's the Best Way to Measure It?

How well patients say they are faring, both during and after cancer treatment, is more important than ever to payers. But measuring that feedback isn’t easy, and ensuring that measurement is fair to both patients and providers is harder still.

Kashyap Patel, MD, cochair of Patient-Centered Oncology Care^®, led the discussion, “Patient-Reported Outcomes and Quality Metrics” just days after the Center for Medicare and Medicaid Innovation (CMMI) presented its outline for the successor to the Oncology Care Model (OCM), called Oncology Care First (OCF). A distinguishing feature of OCF is its call for the use of electronic patientreported outcomes (ePROs),¹ something that Kashyap Patel says makes sense in theory but could be hard to implement with patients who are poor or live in rural areas.

“Half of my patients still don’t have a smartphone—they use a flip phone,” he said. Giving patients a preloaded iPad to answer questions about symptoms may not solve the problem, because internet service may be spotty where patients live, or patients may not be able to afford service.

“So, how do we circumvent those issues?” he asked. The following panel members joined Kashyap Patel for “We’re very interested in getting beyond the patient-reported outcomes, and [we’re] rapidly looking at where the market is going, into patient-originated data,” Gosse said. Workflow issues are critical, because apps can create enrollment issues, and it’s diffi cult to add another process to the clinic setting—there can’t be a new enrollment for every new drug. “There’s lots of opportunity,” he said, “We’re working to get things past the real active, manual effort it takes to be successful today.”

Kashyap Patel said usefulness of these data still comes down to what’s being measured, and he asked Pitzen if measures will account for the socioeconomic differences such as those he sees in his practice, which is located in South Carolina. Pitzen said the NCIS tool measures 3 symptoms—nausea, pain, and constipation—which are symptoms “that regardless of where you are on your cancer journey, those symptoms need to be addressed in pretty rapid fashion so that chemotherapy can continue.”

The NCIS tool is free and practices can add additional symptoms to track, but she would not recommend tracking every symptom for every patient. An academic medical center using the tool is experimenting with using diff erent collection methods, including paper. One concept is installing patient portals in the clinic, so that patients can log in their symptoms when they arrive at an appointment. Edge said this method would save time for providers. Methods that provide information before the appointment starts save time, but this can also include better nursing assessments.

Kashyap Patel said making changes to add ePROs will require up-front investment, but that this could lead to long-term savings. When his practice adjusted its scheduling and operations to free up 2 slots for same-day appointments—to meet requirements of the OCM—it seemed like a money-loser. But the reduction in emergency department visits and hospital stays has made the change a winner. He said the question is, what kind of electronic collection device will make ePROs worth the investment in 5 years?

Wearable devices are 1 solution, Amila Patel said. They don’t require surveys—and the information comes straight to the provider. Many parameters must be worked out, she noted. “I think we’re going to have to make them part of our daily life,” Edge said of PROs. To some extent, PROs are already here, but clinics have not always

put them to use.

Investments can be worth it, Gosse said. Oncology networks already working with McKesson to incorporate new tools have seen the efficiencies that result, as well as patient satisfaction. “The eff ort of getting the new mindset in place, the new staffi ng in place—you’re changing the phone trees and how the people are answering the phones; you’re empowering nurses or care teams in new ways. And that’s a significant transformation—that’s more than technology. . . .It’s really rewiring the practice in some ways.”

Ultimately, Pitzen said, “You can’t improve something if you’re not measuring it.” She agreed with Edge that the best approach to metrics is not punitive but rather a method that measures symptoms so patients can continue chemotherapy and have a better experience. “It’s what is actually best for patients,” she said.

The following panel members joined Kashyap Patel for the discussion:

STEPHEN B. EDGE, MD, FACS, FASCO,

the vice president for Healthcare Outcomes Policy and professor of oncology at the Roswell Park Cancer Institute;

COLLETTE PITZEN, RN, BSN, CPHQ,

a clinical measure developer at Minnesota Community Measurement;

AMILA PATEL, PHARMD, BCOP,

the director of Clinical Product & Content, Clinical Oncology at Flatiron Health; and

NATE GOSSE, PHD,

vice president of Product Management at McKesson.

Edge said the point of data collection and quality measures should not be to yield results that compare physicians for comparison’s sake. “Unfortunately, I still see too many people saying we need to find quality measures that diff erentiate one doctor from another doctor to say that, “They’re a good doctor. They’re a bad doctor.’ ”

Measurement, Edge said, should be used to highlight problems and swiftly turn around data to implement change quickly. A system that spots the fact that a doctor hasn’t started a patient on chemotherapy, for example, helps both the doctor and the patient. He and Amila Patel agreed that ePROs are valuable to this process. Amila Patel said for data collection to yield meaningful results, the process must be integrated into the workflow. “You really need to build tools that work for patients and providers and reduce the burden.”

Edge said when he was developing early quality measures for the Commission on Cancer, he learned the importance of asking patients what they find valuable.

Gosse said when it comes to incorporating ePROs into McKesson’s system, which supports 2000 oncology providers, these measures are “1 slice of how we’re bringing the broader patient voice to the care discussions and into care operations.” He agreed with the need to integrate the process into the physician’s workflow.

So, how are measures developed that represent meaningful results for people with cancer? Pitzen outlined a process that led to a measure in the National Cancer Information System (NCIS) for the severity of nausea on particular days of a chemotherapy cycle. It began with convening a stakeholder group, and it followed what Pitzen called “guiding principles,” which include:

• ensuring that measures are appropriate for PROs—

measures in cancer will be diff erent than those in other conditions, such as diabetes;

• using strong “psychometric properties,” so that measures are valid; and

• ensuring that outcomes can be quantified.

Ideally, measures are in the public domain, Pitzen said. “We don’t want to tamper with the validity and reliability of the tool,” she said. Many national measures now in use started this way.

Kashyap Patel asked the panelists to discuss how to strike the right balance between gathering enough information without overwhelming patients with questions—and how to find methods that make sense and will not overwhelm clinical staff . He brought the group back to his fl ip phone example.

“We want to make sure that we’re building technology to account for all of those situations,” said Amila Patel. “We can’t just build tools for people that are literate and have access. . . . We need to build tools for patients from diff erent socioeconomic backgrounds that take literacy into account, different language barriers.”

Mobile phones and apps are not for everyone, she said. Having more than 1 method, whether it’s using tablets in the clinic, or giving caregivers diff erent options to log into a computer—and training them on how to do this—are all ways to boost adoption.

“First, I think we need to keep the tools simple,” Edge said. Tools that help patients and doctors, as much as assessing them, will be used and will make a diff erence, he said. Reducing barriers, including financial ones, is essential.

“There is evidence that we would save money by providing people with the smartphone, by providing them with the iPad,” he said, citing studies in chronic disease management. Kashyap Patel said that as CMMI develops the OCF, these costs could be factored into an alternative payment model. He then asked Gosse what kinds of challenges these ideas would present to McKesson if ePROs had to be incorporated quickly.

Gosse said ePRO implementation creates 2 distinct customers: the patients and the providers. Even if patients have a smartphone, will they want to fi ll out a survey every time they get a text message? Patients may ask, “Is it worth my time? What am I going to get from it?”

From the provider standpoint, it’s only worthwhile to set up the patient to send in ePROs if its feeding into a dashboard that someone sees and can act upon quickly. “We’ve got to get those 2 teams really empowered, as seeing value on both sides, before we can really start to bring value to our payers or to our pharma partners,” he said.

“We’re very interested in getting beyond the patient-reported outcomes, and [we’re] rapidly looking at where the market is going, into patient-originated data,” Gosse said.

Workflow issues are critical, because apps can create enrollment issues, and it’s difficult to add another process to the clinic setting—there can’t be a new enrollment for every new drug. “There’s lots of opportunity,” he said, “We’re working to get things past the real active, manual eff ort it takes to be successful today.”

Kashyap Patel said usefulness of these data still comes down to what’s being measured, and he asked Pitzen if measures will account for the socioeconomic diff erences such as those he sees in his practice, which is located in South Carolina.

Pitzen said the NCIS tool measures 3 symptoms—nausea, pain, and constipation—which are symptoms “that regardless of where you are on your cancer journey, those symptoms need to be addressed in pretty rapid fashion so that chemotherapy can continue.”

The NCIS tool is free and practices can add additional symptoms to track, but she would not recommend tracking every symptom for every patient. An academic medical center using the tool is experimenting with using diff erent collection methods, including paper. One concept is installing patient portals in the clinic, so that patients can log in their symptoms when they arrive at an appointment.

Edge said this method would save time for providers. Methods that provide information before the appointment starts save time, but this can also include better nursing assessments.

Kashyap Patel said making changes to add ePROs will require up-front investment, but that this could lead to long-term savings. When his practice adjusted its scheduling and operations to free up 2 slots for same-day appointments—to meet requirements of the OCM—it seemed like a money-loser. But the reduction in emergency department visits and hospital stays has made the change a winner. He said the question is, what kind of electronic collection device will make ePROs worth the investment in 5 years?

Wearable devices are 1 solution, Amila Patel said. They don’t require surveys—and the information comes straight to the provider. Many parameters must be worked out, she noted.

“I think we’re going to have to make them part of our daily life,” Edge said of PROs. To some extent, PROs are already here, but clinics have not always put them to use.

Investments can be worth it, Gosse said. Oncology networks already working with McKesson to incorporate new tools have seen the effi ciencies that result, as well as patient satisfaction. “The eff ort of getting the new mindset in place, the new staffing in place—you’re changing the phone trees and how the people are answering the phones; you’re empowering nurses or care teams in new ways. And that’s a significant transformation—that’s more than technology. . . . It’s£really rewiring the practice in some ways.”

Ultimately, Pitzen said, “You can’t improve something if you’re not measuring it.”

She agreed with Edge that the best approach to metrics is not punitive but rather a method that measures symptoms so patients can continue chemotherapy and have a better experience. “It’s what is actually best for patients,” she said.Reference

1. Caffrey M. CMS, CMMI seek feedback on Oncology Care First, successor to OCM. The American Journal of Managed Care® website. ajmc.com/newsroom/cms-cmmi-seek-feedback-on-oncology-care-first-successor-to-ocm. Published November 3, 2019. Accessed February 9, 2020.

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