Improving Patient-Reported Outcomes

Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) aren’t new to the healthcare industry. What is new is the pioneering work the International Consortium for Health Outcomes Measurement (ICHOM) is doing to help healthcare organizations worldwide understand and use PROs and PROMs to improve patient outcomes.

ICHOM is a research–based, nonprofit organization with a mission to unlock the potential of value-based healthcare. The core of its work is to define and drive adoption of international standards on the outcomes—by condition—that really matter to patients. According to ICHOM’s Vice President of Standardization and Business Development, Dr. Caleb Stowell, “Everyone’s talking about value-based health care, but what defines value? ICHOM was founded to answer that question.” ICHOM has already identified standard sets for 13 conditions (covering 35 percent of the global disease burden) and is currently working with innovative providers and health systems globally to support the adoption of these standard sets.

The philosophy behind using PROs and PROMs is to understand patients’ health from their perspective. Traditionally, health systems and clinicians have focused on measuring concrete clinical outcomes because they are much easier to measure—survival is a simple, dichotomous event. “But for most of medicine, the question is no longer whether someone will survive, but how their life will be after treatment,” says Dr. Stowell.

In an industry that ranks health systems according to clinical and process indicators (e.g., mortality and infection rates), ICHOM is proving that healthcare organizations that collect and measure PROs can learn and improve, demonstrate superior outcomes, attract patients, earn respect, and become leaders among their peers.

What Are PROs and PROMs? In Search of Useful, Meaningful Definitions

Patient-Reported Outcome (PRO)

The acronym “PRO” has been an umbrella term for decades; it’s included patient satisfaction, productivity assessments, and anything else patient reported. The resulting definition was broad—too broad to be useful. ICHOM’s PRO definition is based on Wilson and Cleary’s work, which divides PROs into three main categories:

  1. Symptom burden
  2. Functional impact
  3. Health-related quality of life

ICHOM reaffirmed this definition because it is clear and specific and distinguishes between measures of patients’ health versus the experience of their care (increasingly documented using Patient-Reported Experience Measures or PREMs).

ICHOM Project Leader, Dr. Sara Sprinkhuizen, has conducted extensive PROs and PROMs research and is helping to develop a framework for global healthcare data collection and analysis. When it comes to PROs she says, “An outcome is a result or end state; anything measuring an intermediate state isn’t an outcome.”

Patient-Reported Outcome Measure (PROM)

A patient-reported outcome measure (PROM) is any instrument, scale, or single-item measure used to assess the PRO concept as perceived by the patient, obtained by directly asking the patient to self-report. PROMs include any method used to collect patient input, from diaries and event logs, to one-item or multi-item multi-domain scales.

PROs and PROMs have been used in healthcare for decades, but primarily in research settings. The Medical Outcome Study in the 1970s measured the impact of care patterns on outcomes for patients with chronic medical conditions and depression. The study used a 116-item survey to assess quality of life including physical, mental, and general health. It was a landmark study; adapted forms of the study’s survey have become gold standards in the field.

Since the 1970s, hundreds of PROMs have been developed across nearly the full breadth of medicine, but for the most part, their use has remained narrow. However, as healthcare consumers become more interested in understanding and acting on their own health data, and clinicians demand analytics to understand the health of their patient populations, the demand for PROMs has surged.

Improving Outcomes with PROs and PROMs

PROs and PROMs help healthcare organizations answer several important questions, including:

  1. How is our patient doing today?
  2. How can we predict how our patients will respond to treatments?
  3. What has the impact been of our team’s intervention on our patient’s health over time?

In their simplest form, PROMs are a mechanism for communicating how patients are actually doing. As Dr. Stowell explains, “It’s not that clinicians don’t care about patients’ quality of life. They do. They simply don’t ask them about these things in a structured, reliable way.”

Dr. Stowell cites the work being done at Stanford Health Care, which participated in developing, and is measuring outcomes consistent with, the ICHOM Standard Set for Low Back Pain: “We did a great film about their care delivery process with this kind of data in place, including a patient interview. I loved the quote from one of their neurosurgeons, Dr. John Ratliff: ‘As a clinician, when you come in to see the patient you have the [PROMs] information immediately available. This benefits the patient by engaging them prior to the consultation. They are already thinking about the outcomes that matter to them, and this cue is being provided at exactly the right time.’ Dr. Ratliff’s patient follows with, ‘I like that when the doctor enters the room, he is already familiar with my condition. It makes me feel more connected to my healthcare.’”

But PROMs can do more than just communicate; they can also predict a patient’s health status. Boston-based Partners HealthCare uses PROMs data for patients with suspected coronary artery disease to predict their likely benefit from coronary intervention. Such predictive models have helped Partners avoid costly interventions when patients don’t stand to benefit.

And in a study of HIV patients in Alabama, data collected via PROMs regarding substance use and depression was found to better predict antiretroviral therapy adherence compared to clinician’s own judgment of patients.

Most importantly, PROMs can complement clinical indicators in understanding the quality of healthcare a team is delivering. Take prostate cancer for example, in which the most common treatment—prostatectomy—can cause high rates of incontinence and erectile dysfunction after the surgery. An improvement program that only focuses on improving blood loss or length of stay in the hospital completely misses a patient’s biggest fears (second only to survival): will they need to wear pads for the rest of their life? Will their relationship with their partner be the same as it was?

Dr. Stowell references the work of the Martini Klinik (a high volume prostate cancer center in Germany) featured in the documentary Measured Outcomes: A Future View of Value-Based Healthcare, “This is a care team that defines its outcomes around the patient and works every day to improve their technique to deliver a better result. Their rates of incontinence and erectile dysfunction are now far below anything previously thought possible.”

With the continued shift toward fee-for-value and increasing healthcare cost transparency, patients are demanding more meaningful information on which to base their decisions. PROs and PROMs are validated methods to provide that information.

Overcoming Barriers to PROs and PROMs Adoption

PROMs are getting industry-wide attention for their ability to contribute to a more holistic picture of a patient’s health, but there are still barriers to adoption – barriers ICHOM is intent on helping healthcare organizations overcome.

Overcoming Content Concerns

At a first pass, clinicians can have a hard time trusting PROMs. Says Dr. Stowell, “Doctors like measurements that are physiological: blood pressure, lung function, and blood counts. PROMs are psychological; they are inherently subjective. But they have to be that way—how else can we assess how the patient perceives his or her illness?” According to Dr. Sprinkhuizen, the healthcare industry tends to underestimate how precise PROMs tools are, unaware of the science and methodology that goes into their development. She says, “PROMs should be taken as seriously as any other medical instrument. They are scientifically and linguistically validated instruments.”

Deciding what PROMs to use is also a big barrier adoption. When faced with a choice between dozens of tools, health systems’ lack of understanding about the most appropriate tools for their targeted outcomes and improvement goals can stifle their efforts; but selecting the right tool is essential for PROMs to be clinically interpretable and actionable. As Dr. Stowell explains, “This is the core of what we are trying to do in the field: give guidance and support harmonization in what is, today, a very fragmented approach to outcomes measurement.”

ICHOM develops its recommendations, including PROM tools, through deep engagement with international expert groups over a nearly year-long process. “Choosing the best PROM in a given field is always the single biggest discussion point in any Working Group,” says Dr. Sprinkhuizen. “We conduct a detailed evaluation of the tools in order to provide guidance, including a review their validity, reliability, and clinical interpretability, but it’s not always clear which tool is best. At times, we simply need to recommend the best currently available option to get started and move the field forward.” ICHOM recommendations are available to the public on its website and published in academic journals.

Overcoming Operational Concerns

In a field that still utilizes paper questionnaires, technology gives healthcare organizations a much better channel for collecting PROs. Instead of administering a hard copy survey, clinicians can reach out to patients by sending a quick email or message.

Dr. Sprinkhuizen believes technological advancements mean better access—for patients and providers. “For example,” she says, “ophthalmology patients don’t have to see an optometrist to have their visual acuity tested; there’s an app for that now. Patients with macular degeneration can use the app to test their visual acuity wherever they want, whenever they want. The app alerts their optometrist if their visual acuity drops. But technology enabled access to patients introduces a new challenge: collecting patient data in private, secure, non-invasive ways.”

Getting Started with PROs and PROMs: Five Strategies

Despite the many barriers to PROs and PROMs adoption, most health systems agree PROs and PROMs are important. But getting started can feel like a high hurdle. Based on ICHOM’s experience working alongside many healthcare leaders to measure and improve outcomes, they’ve identified five strategies for organizations eager to get started:

#1: Find the Believers (Identify Clinician Champions)

Identify clinician champions who want to know their outcomes and value transparency. Many of these champions are already collecting outcomes data and understand the value in using PROs and PROMs. These champions can help organizations generate momentum and overcome challenges.

#2: Organize a Cross-Functional Team (with Appropriate Governance)

Sustainable outcomes measurement depends on the engagement of a broad range of organizational functions. Appoint a team leader, define deadlines for key milestones, and hold the team accountable for delivering on them.

#3: Invest Time and Resources

Although outcomes measurement is critical to long-term success, it’s a long-term investment that won’t pay off immediately. Engage senior leadership to unite organizational functions and commit resources in pursuit of the long-term benefits.

#4: Celebrate Progress Along the Way

Outcomes measurement programs take time; make sure to celebrate progress along the way to keep stakeholders engaged and maintain momentum.

#5: Use Early Successes to Scale and Spread

Clinicians and frontline staff respond to inspiration from their colleagues, so share success stories to spur interest throughout the organization.

ICHOM’s Harvard Business Review article, What Health Care Leaders Need to Do to Improve Value for Patients provides additional information about these five strategies, including specific examples of each strategy in action.

Measure and Deliver Outcomes Patients Actually Care About

According to Dr. Stowell, “Health systems today face a dizzying array of measures; but how many of those measures are actually useful? If we aren’t measuring and delivering the outcomes our patients actually care about, what use is all of our measurement activity?”

It appears that an increasing number of organizations are of this same mindset. For example, the Core Quality Measures Collaborative—an initiative that bridges public and private payers—recently stated its ambition to reduce, refine, and relate quality measures to focus on “measures that matter.”

Dr. Stowell says, “It’s pretty clear that value-based health care is coming. The question is, do you want to get ahead of it?” He notes that “forward-thinking provider organizations are already taking active steps to incorporate a more patient-centered view of value into their strategic priorities.”

Learn More about ICHOM’s Outcomes Work

Healthcare leaders interested in learning more about ICHOM’s work to define standards, benchmark on outcomes, and establish outcomes transparency, can visit the ICHOM website and read Standardizing Patient Outcomes Measurement, a recently published perspective in the New England Journal of Medicine.

For healthcare leaders interested in being a part of the global value-based care and outcomes improvement conversation, the Annual ICHOM Conference brings together healthcare leaders throughout the world to discuss the “why” and “how” of outcomes measurement.

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