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Collection of patient-reported outcomes crucial for improving care
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The implementation of a simple technology to collect and store patient-reported outcomes could improve patients’ quality of life and outcomes and enhance patient–provider communication, according to Ethan Basch, MD, MSc, director of UNC Lineberger Cancer Outcomes Research program.
“We need to be keyed into our patients’ symptoms in order to practice medicine effectively, and patient-reported outcomes are a tool to help us be more in tune to how our patients are doing,” Basch told HemOnc Today.
In a perspective published in The New England Journal of Medicine, Basch suggests how electronic questionnaires patients complete and submit between office visits can create a more patient-centered environment in health care that benefits patients and clinicians. However, the full implementation of capturing patient-reported outcomes (PROs) is held back by multiple barriers, including cost and technology issues.
Patient-centered health care
Recent advances in technology and survey methods may provide a solution to capturing PROs. The current health care system is not patient centered, according to Basch, who wrote that a PRO system would change this.
“There is a lot of talk about patient engagement and patientcentered in health care, but the fact is, health care is not patient centered, but centered around convenience of hospitals, clinics and clinicians,” Basch said. “The PRO system is one of the simple ways we can truly be more patient centered in how we deliver care.”
There is evidence that the PRO approach can improve patient–clinician communication, ultimately improving a patient’s overall quality of life. The system can play a key role in clinical decision-making, as symptom management would improve and clinicians would be more aware of how a patient feels.
“Most symptoms experienced between patient visits go undetected and many can also go undetected in the office,” Basch said. Subjects may go undiscussed at office visits due to a variety of reasons, including limited time, review of laboratory/scan results, socializing or just simply forgetting, he added.
“There are all sorts of reasons things might not get mentioned,” Basch said. “On top of this, the more psychodynamic reasons are sometimes patients just do not mention symptoms to doctors and sometimes doctors don’t listen so well. But regardless of the cause, the observation in research is that doctors miss up to half of symptoms their patients are experiencing for whatever reason.”
Using a PRO tool can enable patients to complete the questionnaires at or between visits, and then the data are transmitted to the electronic health records (EHRs) for doctors and nurses to view.
“Doctors and nurses can become more aware of symptoms patients are experiencing so they can then act on them and alleviate the suffering,” Basch said. “Secondarily, it improves communication so it makes them feel more in touch with providers.
“They also feel more engaged with treatment delivery,” he said, adding that many systems are designed not only to collect the information, but give feedback and help a patient manage their problems.
Currently, there are multiple institutions who have successfully implemented a PRO model, including Dartmouth-Hitchcock Medical Center, Cincinnati Children’s Hospital, Cleveland Clinic and Memorial Sloan Kettering Cancer Center. Basch said in his perspective that these institutions collect PRO data in their own ways; for instance, Dartmouth-Hitchcock Medical Center collects PRO data on pain and emotional health from outpatients and include these data with their vital signs in their EHR system, and Cleveland Clinic systematically collects PROs from outpatients seen at 12 of its institutes.
However, collecting and reviewing PROs has not become widely implemented into routine care everywhere due to key barriers.
Barriers, limitations
Three key barriers exist that prevent PROs from becoming a part of routine care, according to Basch. These include EHR vendors, reimbursement and lack of standardized methods for integrating PROs into a clinician’s workflow.
EHR vendors (ie, Allscripts, Cerner and Epic) are the companies that have created the EHR systems hospitals spend millions on and are required to use, Basch said. They are very complex, complicated systems, and their existing software platform is not necessarily amendable. Some EHR companies are not entirely open-minded to patient-centered care, he added.
“Some are more forward thinking than others. My institution uses Epic and has representatives that have been forward thinking and trying to improve how this works. They are very engaged with hospitals and clinicians,” Basch said.
Regardless, barriers remain within the EHR systems themselves.
“Overall, they are clunky, not adaptable for third-party software and leave the hospital with the burden of having to do the programming themselves. It is very cumbersome and a huge barrier,” Basch said.
In terms of reimbursement, CMS and the Office of the National Coordinator for Health Information Technology have acknowledged the importance of PROs, but have neglected to create financial incentives for widespread implementation, mostly due to uncertainty of the implementation approach, Basch wrote in his perspective.
“Although CMS currently offers modest per-member per-month payments for remote monitoring of chronic conditions and chronic care managements, it has not been prescriptive enough to prompt wide adoption of PRO–collection systems,” Basch wrote, adding that it is unrealistic to expect all health care organizations to start using new data systems for PROs, due to expenses and logistical changes.
“We need to create an electronic system for capturing and holding the information; this requires a wide range of professionals and patients to pull it off and we are busy,” Basch said.
In his perspective, Basch wrote that a PRO system may create a shift in workflow, and clinicians would need to be prepared and trained in effective approaches for handling and responding to the information without disrupting current care.
Other challenges remain, including the threat of inertia, Basch said.
“I think, like anything in health care, it’s hard to overcome inertia,” Basch said. “There is a way we’ve been doing things for a long time and this model is an innovation. There are a lot of moving parts that need to be in place to affect this change,” Basch said. – by Melinda Stevens
For more information:
Ethan Basch, MD, MSc , can be reached at ebasch@email.unc.edu.
Disclosure: Basch reports no relevant financial disclosures.
Perspective
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Ethan Basch, MD, MSc, presents a compelling perspective on the importance and feasibility of incorporating the patient’s experience into cancer care through collection of patient-reported outcomes (PROs). His challenge to the oncology community — that patients must be actively engaged and contribute their concerns and perspective to truly achieve patient-centered care — is well taken.
Basch also provides a number of cautions for those taking the leap and joining the growing number of health systems, which include cancer community practices and cancer centers, who are now routinely measuring PROs. The Huntsman Cancer Institute at University of Utah recently implemented the routine collection of five Patient-Reported Outcomes Measurement Information System (PROMIS) measures for all patients with cancer; this includes the measurement of fatigue, pain, depression, anxiety and physical function.
In developing and integrating the collection of PROs into clinic workflow, many decisions and processes had to be considered. The International Society for Quality of Life Research provides an excellent overview in considering these decisions in their User’s Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice. The key to success is making sure data are easily available and interpretable for clinicians at the point of care. Thus, data need to be integrated and stored with all the other patient data in the electronic health record (EHR). At each clinic visit, treatment planning can include not only the disease, but also patients’ perspectives on their symptoms and functioning. Basch notes that, to date, the integration of PROs into the EHR is still evolving and can be a barrier.
Successful collection and use of the PRO data need to be readily available to the clinician and the interpretation equally simple and instantaneous. Our use of the PROMIS measures, which has a computer-adaptive testing version, allows fewer questions to be asked to decrease patient burden. This also permits easy interpretation, as the scoring converts to standardized scores for all measures and clinicians quite quickly grasp the scoring rubric. For example, a score of 50 on the depression scale is normal for those without depression and scores in the upper 50s represent mild symptoms, whereas scores above 60 require further evaluation. To make sure patients’ needs are addressed, patients whose depression scores are 65 and above are seamlessly referred to our social work service for follow-up.
Patients are prompted by an email from the EHR patient portal to complete their PROs at home, prior to a clinic visit, or they can complete the measures on a tablet computer when they check into the clinic. Multiple language versions are available. Once the patient completes the PRO questionnaires — which on average, takes less than 5 minutes — the results appear within seconds in a tab in the EHR, so they are immediately available at the point of care. The results are graphed so that the symptom trajectory over time is readily evident, which adds perspective to the current scores.
Successful implementation of PROs also requires clinical champions who promote the benefits of PRO collection and take a problem-solving approach to the innumerable problems that present when a new process is retrofitted into a clinical environment. Most importantly, once the collection of PROs runs smoothly, the focus should turn to encouraging the active use of the patient-contributed data both for the individual patient’s care encounter and treatment planning, and also for aggregation with other patients’ data for quality improvement initiatives. Once there is sufficient data, decision aids can be developed that allow patients to either understand expected symptoms if choosing between treatment options — or to better understand the expected patient experience of a single recommended treatment. The overriding goal when implementing PROs is not their collection, but that PROs become meaningful for individual patient care and contribute to improvement of patient outcomes overall.
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