October 24, 2017
14 min read

Electronic symptom-reporting tools break down care barriers, but practical challenges remain

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Research presented during the plenary session at this year’s ASCO Annual Meeting highlighted the potential power of technology to capture patient-reported outcomes.

The study, presented by Ethan M. Basch, MD, MSc, FASCO, director of the Cancer Outcomes Research Program at Lineberger Comprehensive Cancer Center of University of North Carolina at Chapel Hill, showed patients with metastatic cancer who used an online system to report symptoms during chemotherapy receipt survived significantly longer than those who did not use the system.

Those who used the web-based tool also remained on chemotherapy longer, required fewer emergency room visits and reported better quality of life.

“We’re at the infancy stages but, over time, there will be an increasing appreciation for the utility of this information and the use is only going to grow,” Irene L. Katzan, MD, MS, director of the Neurological Institute Center for Outcomes Research & Evaluation at Cleveland Clinic, told HemOnc Today. “The data we have suggest the potential for tremendous clinical utility.”

However, adoption of electronic tools that integrate patient-reported outcomes (PROs) into clinical practice remains a challenge for providers who want more efficient utilization of electronic health records.

“Increasing the use of electronics is a good thing, but not all electronic health records are created equally,” Derek Raghavan, MD, PhD, FACP, FRACP, FASCO, president of Levine Cancer Institute at Carolinas HealthCare System and HemOnc Today’s Chief Medical Editor for Oncology, told HemOnc Today. “Some of the vendors sell products — at outrageous costs — that are actually inferior and that make physicians much less efficient. We’ve estimated that some of the vendors we use have products that reduce the efficiency of seeing patients by as much as 20% to 30%.”

HemOnc Today spoke with EHR specialists and oncologists about the clinical utility of electronic tools to capture PROs, their role in value-based reimbursement, the benefits and drawbacks of using electronic tools to reduce in-person encounters between clinicians and patients, and the potential impact these tools may have on medical practice.

Convenience over tradition

Basch and colleagues’ study on electronic symptom reporting evaluated a 5-point scale that allowed patients to electronically rate 12 common symptoms of chemotherapy, such as loss of appetite, difficulty breathing, fatigue, hot flashes, nausea and pain.

Patients who used the online system achieved significantly longer median OS than those who discussed symptoms during routine office visits or phoned care teams when symptoms changed (31.2 months vs. 26 months; HR = 0.83; 95% CI, 0.69-0.99).

Patients who used the electronic tool also reported better quality of life.


“Symptoms such as nausea, pain and fatigue are common among patients with metastatic cancer but, unfortunately, they often go undetected by doctors and nurses until they become severe and physically debilitating,” Basch told HemOnc Today. “This is because, between visits, patients are often hesitant to call the office until problems become severe.”

Many patients who receive chemotherapy do not feel well enough to attend frequent office visits, Basch said. Participating in a PRO system may reduce the number of in-person visits without sacrificing quality of care.

“The practice of medicine is organized around the convenience of clinicians and administrators,” Basch said. “People have to come to us at the hours we’re open. Some of these real-time electronic tools help us to create models that are more amenable to the way patients are living their lives and in the setting where patients are.”

If a new drug conferred a survival benefit comparable to that observed with the online symptom reporting tool Basch and colleagues evaluated, pharmaceutical companies would set a retail price at hundreds of thousands of dollars, Harold J. Burstein, MD, PhD, FASCO, senior physician at Dana-Farber Cancer Institute and associate professor of medicine at Harvard Medical School, said during a press conference following Basch’s presentation at ASCO.

“It is remarkable that a relatively simple intervention that allows us to meet patients where they are — and allows them to communicate with us without the traditional barriers of having to call an office — can reduce ER visits, improve quality of life and, incredibly, improve OS,” Burstein said. “A big challenge for our clinicians is going to be how we implement such systems.”

Actionable data is the key to effective utilization of patient-reported outcomes, according to Kathi Mooney, PhD, RN, FAAN.
Actionable data is the key to effective utilization of patient-reported outcomes, according to Kathi Mooney, PhD, RN, FAAN. “Patients really care that there’s a systematic way they can report how they’re doing,” Mooney said. “One of the important things is not that you just collect a lot of data, but that the patient sees you can do something with them.”

Source: University of Utah Health Sciences.

The key to effectively utilizing PROs is making data actionable, according to Kathi Mooney, PhD, RN, FAAN, distinguished professor of nursing at University of Utah College of Nursing and co-leader of the cancer control and population science program at Huntsman Cancer Institute.

“Patients really care that there’s a systematic way they can report how they’re doing,” Mooney told HemOnc Today. “One of the important things is not that you just collect a lot of data, but that the patient sees you can do something with them.


“Instead of overwhelming patients with a booklet of 15 different side effects they might experience and what they can do about them — along with a handful of prescriptions in case any of those occur — to track patients’ experiences and tailor care specifically to what that patient is experiencing is a huge advantage,” Mooney added.

Underuse of PROs

Experts agree PROs provide critical information for clinical decision-making and help gauge the quality and effectiveness of care.

However, challenges lie in how health care providers can integrate such systems into EHRs, and how to empower medical teams to incorporate them into care.

Only one in five hospitals routinely use PROs as part of the care process, according to a 2016 survey by Health Catalyst.

Among organizations that use PROs to some degree, only 22% reported using patient-generated data for treating and managing patients with cancer. The most common reasons for use included chronic care tracking (59%) and surgical interventions (58%).

However, 72% of hospitals that never or rarely used PROs reported plans to integrate patient-provided data into routine care within 3 years.

The reasons most often given for underuse of PROs included time or financial concerns (36%), difficulty fitting data into clinical workflow (26%), technological barriers (15%) and organizational resistance to change (10%).

Integration of PROs into a hospital’s EHR is a major hurdle.

“Eventually, electronic health records ... are going to, through their patient portals, make available different instruments to measure outcomes and symptoms,” Mooney said. “We’re at a tipping point. Some of us are doing it now with our own developed ways of administering PROs but, within a year or 2, there will be more availability through electronic health records to interact with patients.

“We have to put pressure on the EHR vendors to create a demand so they are willing to [integrate PRO collection],” she added. “We’re getting closer to the point where vendors will make it possible and more widely accessible.”

Epic is the most widely used EHR among hospitals and health system networks (41%), followed by Cerner (13%) and MEDITECH (6%), according to a 2016 Medscape report. Allscripts Enterprise, eClinicalWorks, VA-CPRS and NextGen each accounted for 4% of EHRs in hospitals and health system networks.

In an effort to better integrate PROs into widely used EHRs, a coalition of nine universities received a $6.3 million NIH grant to install the Patient-Reported Outcomes Measurement Information System, or PROMIS, into their university hospitals. The project — named EHR Access to Seamless Integration of PROMIS (EASI-PRO) — began in September 2016.


Epic officially announced integration of PROMIS at its User Group Meeting in late September, and the Cerner integration is expected by fall 2018, according to Justin B. Starren, MD, PhD, FACMI, director of the Center for Data Science and Informatics at Northwestern University’s Feinberg School of Medicine and principal investigator of EASI-PRO.

Starren said the “secret sauce” that makes PROMIS software unique is its ability to quickly analyze a patient’s answer and apply it to the next question. Completing a PRO questionnaire can take as little as 5 minutes.

“One of the things incorporated into the PROMIS approach is the idea of separating the symptom from how much the symptom messes up a patient’s life,” Starren told HemOnc Today. “What does pain keep you from doing? That’s what really matters to people, especially in the oncology space. If you focus on the symptoms that are bothering people most, they are better able to tolerate chemotherapy and get a higher total dose. The fact that translates into better survival outcomes doesn’t surprise me.”

Before more of these streamlined tools are integrated into health systems, some are opting to develop their own approach.

At Huntsman Cancer Institute, Mooney helped create a customized phone-based questionnaire that measures 11 symptoms associated with chemotherapy. The automated phone voice systematically asks the patient if he or she has experienced each of the symptoms by asking, for instance, “Have you experienced pain in the last 24 hours?” Additional questions add further assessment information, such as if patients have been taking their pain medicine regularly.

A web-based system that can be inserted into a patient’s EHR alerts providers to the most severe and poorly controlled symptoms.

Since introducing the automated phone survey, patients’ severe symptom days have declined by 66% and moderate symptom days decreased by 40%, Mooney said. Simultaneously, there has been a sharp increase in days with mild or no symptoms.

“Instead of patients ending up in the emergency department because they can’t stand the pain anymore, or being hospitalized because they’re so dehydrated, this patient-reported system actually reverses symptoms because it tracks them when they aren’t a serious problem,” Mooney said.

The challenge for oncologists is accurately assessing information from PROs and responding to them in a clinically meaningful way.

“Some patients will complain about the side effects of treatment, but the treatment is a game-changer,” Raghavan said. “It makes little sense to prolong life for only 6 weeks if the whole 6 weeks consist of miserable side effects. On the other hand, if you prolong life by 3 or 4 years and the terrible side effects last 6 weeks and then go away, you could reasonably say that taking the PRO data in isolation will give you the wrong answer.”


Patient, physician concerns

Nearly 40% of patients at Cleveland Clinic complete PROs and more than half say it makes them feel more in control of their care, Katzan said.

However, despite the benefits, the constant reporting of symptoms may burden patients and their physicians. Between 110,000 and 120,000 PROs are collected every month at the institution, Katzan said.

“If patients have multiple conditions and are seeing multiple specialties, they’re going to get a lot of questionnaires,” Katzan said. “We need to pay attention to minimizing the burden for the patient. We also know that not every provider reviews the data with the patient and that [number], ideally, should be 100%.”

Younger patients may be more amenable to electronic submission of PROs.

In a study published this year in Cancer, Shaw and colleagues analyzed PRO data collected from 390 patients who underwent allogeneic hematopoietic cell transplantation. The mean age of patients who indicated a preference for electronic PRO collection was 30 years, whereas the mean age of those who preferred paper-and-pencil responses was 53 years.

That study also showed differences in the types of patients more likely to respond.

Adults were more likely to complete the PRO questionnaires if they were aged older than 50 years (OR = 1.58; 95% CI, 1.03-2.41), white (OR = 4.61; 95% CI, 2.66-7.99) or married (OR = 2.28; 95% CI, 1.42-3.65). Children were more likely to do so if their families had higher income (OR = 4.99; 95% CI, 2.12-11.75).

Researchers reported a 74% retention rate after 1 year. Forty-five percent of patients submitted the surveys without a reminder, 30% to 50% required one reminder, and the remainder received more than one reminder.

“Patients love the idea [of PROs] because they don’t have to come to the doctor, and it keeps us in touch with the patterns of side effects,” Raghavan said. “But, we’ve noticed that — with time — there’s a drop-off in participation because they’re either not feeling well and don’t want to do it, or feeling fine and couldn’t be bothered. It requires patients to put a fair amount of effort into participating.”

There also may be similar discrepancies in participation rates among providers.

“Some people will think the data are adequate for them to begin using as part of clinical care,” Katzan said. “The people who are not interested in adding another piece of electronic machinery to their workflow and are already too busy will probably say the data are not adequate.”

In the Medscape report, 71% of doctors aged 56 years or older said EHRs slow down their workflow, compared with 48% of doctors aged younger than 30 years. A greater proportion of younger respondents reported that EHRs speed up their workflow (36% vs. 19%).


“It is frustrating within practices to add one more thing oncologists have to look at and respond to,” Mooney said. “Symptom care has never been a highly reimbursable function based on a fee-for-service system. But, in a value-based system, it will absolutely be something worth doing. The valuing has to change so that it is reimbursed, whether it’s an oncologist or nurse practitioner responding to the symptom.”

Focus on value

In the age of value-based medicine, providers are paying more attention to a patient’s well-being after discharge.

This has placed greater emphasis on the value of PROs.

In a study published this year in Journal of Managed Care & Specialty Pharmacy, Brogan and colleagues asked global payers to rate which outcomes — stability of disease, improvement in health-related quality of life, improvement in symptom severity or frequency, improvement in functional status, slowing of functional deterioration relative to comparator, or other — would be most convincing to support appropriate reimbursement of oncology treatments after progression.

Payers consistently rated improvements in health-related quality of life, symptom severity or frequency, and functional status as being extremely important.

Respondents also ranked oncology as the therapeutic area in which PROs had the greatest influence on decision-making. When asked about specific oncology products with PRO data that particularly affected favorable reimbursement decisions, U.S. payers cited enzalutamide (Xtandi; Astellas, Medivation) for prostate cancer and ruxolitinib (Jakafi, Incyte) for myelofibrosis.

Being compliant in a value-based market is one of the most common concerns among oncologists, according to Susan Stiles, solution executive for oncology at Cerner. With integration of Medicare’s new Merit-based Incentive Payment System, or MIPS, over the next 2 years, clinicians must adhere to a variety of patient-centered metrics — including the use of PROs — or face payment adjustments of up to 4% in 2019.

“If we’re talking about value-based reimbursement and not procedural or visit-based reimbursement, [integration of PROs] is going to happen,” Katzan said. “I’m confident our reimbursement model will catch up as we continuously communicate and manage patients remotely.”

Cancer programs and practices must show improved clinical outcomes. This requires clinicians to keep up with an exploding scientific knowledge base, proactively manage new and unusual symptoms to avoid unnecessary hospitalizations, and meet increasing demands for administrative documentation, Stiles said.

“[Clinicians] tell us that — to efficiently and effectively manage PRO data in real time — they need automated solutions for patient data collection, and their care teams need clear visibility into trends, with alerts when patients need immediate attention,” Stiles told HemOnc Today. “Otherwise, the clinical resources and support staff workloads are unsustainable.”


To address some of those concerns, Cerner partnered with Carevive Systems — a company that integrates electronic PROs with scientific data to create a care planning process — to build an oncology-specific PRO platform. That platform will be integrated into Cerner’s PowerChart Oncology and include automated and tailored patient surveys, as well as tools for clinical management and patient self-management.

“Carevive’s patient-specific dashboards, integrated within Cerner, will allow clinicians to easily visualize longitudinally trended electronic PROs,” Carrie Tompkins Stricker, PhD, RN, AOCN, chief clinical officer and co-founder of Carevive, told HemOnc Today. “Population-level dashboards will enable care teams to review threshold-based symptoms and to intervene before adverse outcomes develop. Carevive will also offer automated supportive care plans to patients that include self-management strategies and instructions on what to do if symptom severity increases.”

Reimbursement issues

Electronic record-keeping systems initially were not designed to track results that occur between office visits or to properly document a remote consultation.

Many oncologists with whom HemOnc Today spoke voiced concerns about how providers will be paid for responding to changes in patients’ symptoms.

“Expanding telehealth makes good sense, especially in isolated areas,” Raghavan said. “But, a doctor might spend an hour working through an electronic consultation and have no mechanism to leverage a bill. There are very few industries where people are asked to provide completely free services on a regular basis.”

Because the full integration of PROs into EHRs could take up to 2 years, Starren said reimbursement for electronic record-keeping is at an “inflection point.”

“All fields are concerned about this,” Starren said. “If we can shift the payment system to payment for outcomes rather than payment for activities, it will pay for itself. If a video visit is as effective but less expensive than an in-office visit, a single-payer system is highly motivated to incentivize that sort of behavior.”

There is, however, an underlying concern that more personalized health care may mean less one-on-one interaction between oncologists and their patients.

Maha H. Hussain, MD, FACP, FASCO
Maha H. Hussain

“Call me old-fashioned, but I don’t want to see medicine go into a completely robotic mode,” Maha H. Hussain, MD, FACP, FASCO, deputy director at Robert H. Lurie Comprehensive Cancer Center of Northwestern University and a HemOnc Today Editorial Board Member, told HemOnc Today. “I see electronic PROs as a major plus because they enhance direct and timely communication without face-to-face visits, but I believe medicine is about personal touch and contact, and that human interaction is important.”


However, the computer interface can bring patients closer to their providers, Basch said.

“I’m all for the personal touch, too, but currently we are providing no touch at all,” Basch said. “We need to use tools to connect with patients, because we don’t have the capacity to call everybody constantly to check on their status. It is much easier for patients to have a device to connect to us when they need us — just as they have come to expect in other industries.”

Physicians at Levine Cancer Institute can download apps that provide recommended treatment options, related clinical trials, consent forms and blood specimen paperwork. This technology likely will result in better outcomes, but it could lead to many doctors being tethered to their electronic devices, Raghavan said.

“Convenience has become a key driver in the competitive marketplace,” Raghavan said. “But there’s no question one of the big negatives of electronic health records is that doctors have less eye contact because they’re spending more time typing into a chart.”

Within the next 5 years, providers and EHR developers anticipate an array of remote interactions between patients and clinicians that will help fortify a growing database of treatment options, drive personalized care and improve outcomes.

“Eventually, we’ll look at a suite of ways we extend care to patients’ homes,” Mooney said. “I’m really excited about this. Not all cancer care is provided [in an in-patient setting] or during a clinic visit. We need to be able to meet patients’ needs at a distance by monitoring symptoms remotely and interacting with patients when they’re in their homes, especially if they’re feeling ill or are frail or elderly.” – by Chuck Gormley

Click here to read the POINTCOUNTER, “Are patient-reported outcomes data sufficient to safely reduce face-to-face oncology visits?”


Basch E, et al. JAMA. 2017;doi:10.1001/jama.2017.7156.

Brogan AP, et al. J Manag Care Spec Pharm. 2017;doi:10.18553/jmcp.2017.23.2.125.

Health Catalyst. Survey: Fewer than 2 in 10 hospitals regularly use patient-reported outcomes despite Medicare’s impending plans for the measures. Available at: www.healthcatalyst.com/news/survey-fewer-than-2-in-10-hospitals-regularly-use-patient-reported-outcomes. Accessed on Sep. 21, 2017.

Medscape. Medscape EHR Report 2016: Physicians rate top EHRs. Available at: www.medscape.com/features/slideshow/public/ehr2016. Accessed on Sep. 21, 2017.

Shaw BE, at al. Cancer. 2017;doi:10.1002/cncr.30936.

For more information:

Ethan M. Basch, MD, MSc, FASCO, can be reached at ebasch@med.unc.edu.

Maha H. Hussain, MD, FACP, FASCO, can be reached at maha.hussain@northwestern.edu.

Irene L. Katzan, MD, MS, can be reached at katzani@ccf.org.

Kathi Mooney, PhD, RN, FAAN, can be reached at kathi.mooney@nurs.utah.edu.

Derek Raghavan, MD, PhD, FACP, FRACP, FASCO, can be reached at derek.raghavan@carolinashealthcare.org.

Justin B. Starren, MD, PhD, FACMI, can be reached at justin.starren@northwestern.edu.

Susan Stiles can be reached at susan.stiles@cerner.com.

Carrie Tompkins Stricker, PhD, RN, AOCN, can be reached at cstricker@carevive.com.

Disclosure: Stiles reports employment with Cerner. Tompkins Stricker reports employment with Carevive. Basch, Hussain, Katzan, Mooney, Raghavan and Starren report no relevant financial disclosures.