Between the various quality reporting and reimbursement requirements in the value-based care landscape, it seems as though there is no element of healthcare left unmeasured. But as industry professionals embrace patient-centricity, many are turning to patient-reported outcomes (PROs) and patient-reported outcomes measures (PROMs) to examine how patients actually experience their care and outcomes.
Patient-reported outcomes are the metrics patients self-report about their own health outcomes, quality of life, or functional status. These reports come directly from patients rather than through a physician’s recounting of the patient’s health complaints or challenges.
PROs are “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else,” according to the National Quality Forum (NQF). “In other words, PRO tools measure what patients are able to do and how they feel by asking questions.”
Patient-reported outcomes measures are the mechanisms by which the healthcare industry can collect and analyze PROs in a shared, standardized way.
Currently, very few medical professionals are leveraging PROs consistently, according to a 2016 Health Catalyst survey. Only about one-fifth of hospitals routinely use PROMs to understand patient care outcomes.
Seventy-three percent of survey respondents said they planned on integrating PROs into their data collection strategies within the coming two to three years, however, as industry leaders increasingly recognize the value PROs can bring to healthcare.
PROs are different from traditional clinical quality measures (CQMs) because PROs aim to measure the outcome of a treatment plan, not the process. While CQMs look at the lab tests that clinicians order or readmission and mortality rates, PROs look at how a treatment improved a patient’s quality of life - or failed to do so.
PROs are also different from patient satisfaction and patient experience assessments. Patient satisfaction scores, such as the CAHPS surveys, assess aspects of patient-provider communication and facility satisfaction. A patient can report a negative experience with the clinic staff or environment while still experiencing positive health outcomes following a care encounter.
As the healthcare industry continues toward more patient-centric and value-based frameworks, medical professionals will need to measure the elements of care that are most important to patients. They will need to incorporate PROs and PROMs into clinical workflows in order to do so.
But many healthcare organizations are struggling to determine which PROs to measure, how to integrate these data points into their health IT tools, and how to overcome organizational culture barriers that prevent patient or provider buy-in.
What are common PROMs, what do they measure?
There are a number of PROM models tailored to different types of care. There are surveys for knee replacements, urology encounters, and other specialty issues.
Although there are different patient reported outcomes measure models developed by a variety of healthcare stakeholders, they all follow a central theme. These tools help answer the question of how a care intervention impacted and improved the patient’s quality of life.
PROMs examine physical health, including pain levels and sleep quality, as well as mental health concerns such as anxiety, depression, fatigue, and social function.
Some common PROM questions include:
- In general, please rate how well you carry out your usual social activities and roles. (This includes activities at home, at work and in your community, and responsibilities as a parent, child, spouse, employee, friend, etc.)
- To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair?
- How often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?
- In general, how would you rate your physical health?
Other PROMs include more specific prompts catered to an individual procedure or specialist encounter.
There are PROM models for adults, pediatric patients, and family or caregivers.
Well-developed PROM frameworks include the Patient Reported Outcomes Measurement Information System (PROMIS), Neuro-QoL, ASCQ-Me, and the National Institutes of Health (NIH) Toolbox. These PROMs offer digital access, and the NIH Toolbox even lets patients fill out the survey via an iPad.
PROMs typically use plain language to cater to patients with varying levels of health literacy. Offering familiar benchmarks, such as the ability to walk a block for an adult or the ability to play at recess for a child, makes it easier for patients to assess their own wellness.
PROMs are also usually offered in a number of different languages to serve the nearly 21 percent of US patients with limited English language proficiency, per 2013 US Census data. Collecting outcomes data from all patients, including those with limited English language proficiency and health literacy, ensures a complete data set that is actionable for healthcare professionals.
Clinicians do not need to collect every PRO. Instead, clinicians should look at which outcomes are meaningful for a certain patient population or a certain procedure. Overburdening patients and providers with data collection will make it difficult to facilitate patient and provider buy-in.
Overcoming technology barriers
After determining which data to collect, healthcare organizations must identify how they will collect patient-reported outcomes. There is no singular method for collecting PROs, but a successful protocol typically includes health technology.
There are numerous technology barriers in healthcare, however, especially when it comes to PROMs. Fifteen percent of respondents in the Health Catalyst survey said technology issues have kept them from collecting PROs.
Health IT professionals must identify a viable PROMs platform with which they can collect, store, and analyze patient-reported data. There are commercial options for PROMs platforms, as well as companies that collect patient-reported data as a service.
Additionally, some medical industry trade groups, such as the American Joint Replacement Registry (AJRR), have developed and now host PROMs platforms for their members.
The Robert Wood Johnson Foundation (RWJF) also hosts a PROMs platform geared toward medical researchers who value patient input in their work. The Open Research Exchange allows researchers to access PROs for various studies in medicine.
Health IT professionals should look for a PROMs platform that collects the relevant PROMs selected -- PROMIS versus Neuro-QoL, for example -- as well as one that offers functionality in different languages.
Additionally, organizations should prioritize a platform that easily integrates into the electronic health record (EHR). This will allow clinicians to utilize the data during their patient interactions in a seamless manner, wrote Neil W. Wagle, Partners Health’s associate chief quality officer, in an article in NEJM Catalyst
“[Using PROs] requires an electronic platform that works with the patient portal via Wi-Fi–connected tablets,” Wagle wrote. “The platform must also be integrated into the electronic health record system so that results flow into the point of care in real time in order to be actionable. And it must work nearly perfectly because neither patients nor providers have the patience for glitches.”
Integrating PROMs into the EHR is a difficult task for health IT professionals who are still grappling with some of the most basic EHR issues. Hospital technology experts are still having trouble leveraging their EHRs for regular daily tasks, never mind optimizing the tools to integrate an entirely new set of data.
Some projects to address the issue of PROM collection are currently underway.
The Agency for Healthcare Research and Quality (AHRQ), for example, is funding a series of studies that will explore how to digitally integrate PROs into health technologies. In addition, the studies will look at how useful PROs are in improving care.
A coalition of nine universities has also taken on this challenge. The consortium, led by Northwestern University, received a $6.3 million grant from the NIH to attempt to integrate PROMIS into EHRs, including products from prominent vendors like Epic Systems and Cerner.
Healthcare organizations can also use the patient portal to collect PRO data. However, because adoption of portals tends to be limited, providers cannot rely wholly on using these tools to engage patients.
Other technologies, such as office-based kiosks and tablets in the waiting room or at the bedside, could serve as valuable options for collecting PROs. These tools reach patients who might not be engaged enough to answer survey questions at home, or who do not own a personal device to access the patient portal.
Medical professionals should be careful when designing PROM surveys. Asking too many repetitious questions will make the survey too long or daunting and will reduce patient engagement with the survey.
Most patients will lose interest in a survey with 50 questions, so platform developers should include no more than about 30 questions, several studies have recommended.
In a 2017 study published in eGEMs, researchers reviewing PROM case studies determined that the key to patient completion of PROMs depended on a usable tool and a succinct question list.
“Considerations included specifications for desirable instruments, reliable internet connectivity, and respondent concerns, such as the amount of burden, maximum time expected to complete the instrument, preferred form of contact, internet access/email address, and literacy requirements,” the researchers said.
It’s also important to show patients that PROMs are useful. Patients won’t fill out another PROMs survey if providers did not act upon it the last time they did so.
Patients can see the impacts of their PROMs surveys through adjustments in care or even when providers check in about a specific problem reported in the PROM survey.
Overcoming organizational barriers
Organizations are also facing cultural barriers when implementing patient-reported outcomes measures. Per the Health Catalyst survey, 10 percent of healthcare organizations blame organizational resistance for limited PROM integration. Thirty-six percent of organizations said that integrating PROMs is too time-intensive and 26 percent said collecting PROs is a difficult pitch to providers.
As provider fatigue runs rampant and clinicians face a litany of reporting requirements and process demands, it will indeed be challenging to ask providers to assess another set of data. Although many technology fixes can help streamline PRO use, organization leaders may still face an uphill battle, Wagle said.
“Even if the technology works perfectly, patients, clinic staff, and clinicians — busy people already — must work together to make PROMs a reality,” Wagle pointed out in his NEJM Catalyst post. “Convincing them that the small effort is worthwhile is half the battle. The other half is strategically using PROMs to achieve net time savings by making other activities faster.”
Organizations can begin to overcome these challenges by demonstrating the value of PROMs to clinicians. In the eGEMs study, researchers found that the most successful PROMs implementations created provider buy-in by emphasizing the clinical value of patient data.
“Based on our conversations with the Principal Investigators, we found that a PRO measure was more accepted if it added value to the clinician’s work, the patient’s care, and to other stakeholders, such as hospital administrators,” the researchers said.
In some cases, it will be relatively easy to demonstrate the value of a PROM. But to ensure provider buy-in for all measures, healthcare organization leaders should work together with providers to develop PROMs.
A 2016 study published in the Journal of the American Board of Family Medicine showed that collaboration between frontline providers and organization leadership helps create provider buy-in. When leadership discusses decisions with the clinicians who will ultimately be utilizing PROs, it is more likely that clinicians will comply with the change.
Leadership that develops and selects the relevant PROs will likely see better engagement from clinicians, for example.
“While resource intensive, a notable benefit of this approach was that clinical partners were willing to coordinate adoption of PRO measures across all primary care practices in their organizations,” the research team found. “Another benefit of an approach in which PRO measures are implemented within the context of clinical care and quality improvement.”
Integrating PROs into clinical workflows is a worthwhile venture, healthcare professionals across the country have asserted. These measures look at how a clinical intervention makes an impact on a patient’s life and wellness, a valuable element on the road to more value-based healthcare.
Selling yet another quality measurement to providers will require organizational leaders to demonstrate that the effort will be fruitful. Giving providers streamlined collection technology, developing measures together, and making the process easy for patients and providers will be essential to integrating PROs and PROMs into the organization.