Cost, technology issues are barriers to real-time cancer patient symptom reporting

In a perspective published in the New England Journal of Medicine, Ethan Basch, MD, MSc, addressed the need for – and the barriers preventing – electronic reporting of patients’ symptoms between visits.

“There’s tremendous value in integrating these patient-reported symptoms and other measures of how patients are feeling into clinical practice,” said Basch, who is the director of the UNC Lineberger Cancer Outcomes Research Program and a professor in the UNC School of Medicine Division of Hematology/Oncology. “We’re almost there, but there are barriers that we need to overcome.”

Basch and his collaborators found in previous research that the systematic collection of patients’ symptoms using computer surveys was linked to less frequent emergency room admissions, longer average chemotherapy adherence, greater quality of life improvements and improved survival.

Despite these demonstrated benefits, collection of patient-reported symptoms is not standard practice in health care. Basch argues that health care providers could be integrating patient-reported information using questionnaires that patients complete at or between visits using the internet or “smart” devices, and transmitting that data into the electronic health record. Clinicians would receive automated notifications about concerning symptoms or issues.

“There’s nothing earth-shattering here,” Basch said. “Patients already can call us when they have health concerns – although often they are hesitant to call the office or can’t get through. What we want to do is switch this process over to an electronic format. It’s taking something we’ve been doing, and making it more efficient and systematic.”

Why isn’t it happening? Basch said there are several major obstacles.

First, major providers of electronic health records software have only a “rudimentary” ability to collect patient data, he reported, and software applications they have to collect data from patients just simply aren’t used by patients.

“The companies that develop these electronic record systems have not been patient-centered in their approach, so it leaves the patient voice out,” Basch said. “Some of them have developed some patient portal applications, but they’re very clunky, and the vast majority of patients do not use them at this point.”

There is also a lack of strong financial incentives for medical providers to implement systems for patient-reported outcomes. The Centers for Medicare & Medicaid Services pay a per-member, per-month amount for remote monitoring of chronic conditions, but Basch notes the incentive is modest.

“These systems cost money to set up and to accommodate,” Basch said. “There needs to be a business model for doing that. It would save money, ultimately, because there would likely to be fewer ER visits, and outcomes would improve. It would make sense to pay for this because it adds value.”

Finally, Basch said there are concerns with implementation. Medical providers need to find ways to efficiently incorporate monitoring of patient-reported symptoms into their work flow, and there needs to be standardization of the reporting questionnaires that are used.

“There is tremendous unnecessary suffering and unnecessary utilization of emergency services because we are not addressing patients’ problems between visits adequately,” said Basch. “This is just one mechanism for monitoring people, but it could help us turn ‘patient-centered care’ into a reality.”