Unlike the HCAHPS or other patient experience surveys, patient-reported measures (also known as patient-reported outcome measures) ask patients to assess their own functional health and well-being before and after a clinical treatment or procedure. In an interview with IHI Communications Specialist Jo Ann Endo, IHI Vice President Kathy Luther discusses how the use of patient-reported measures holds promise for getting more direct input from patients to help improve care delivery, and for helping organizations evolve into value-based systems. Ms. Luther helped to develop the upcoming IHI Virtual Expedition: Patient-Reported Measures – A Key to High-Value Health Systems.
Q: What are patient-reported measures?
Patient-reported measures, or PRMs, are reports on the status of a patient’s health condition directly from the patient. Many health care providers track lots of process measures — things like bundle compliance, and time to treat, for example — and outcome measures. But providers rarely ask for the patient’s perspective on their health status.
Everyone’s familiar with HCAHPs and similar types of surveys that gather data on the patient experience, and ask things like, “Did you get the information you needed? Did you understand how to take your medications?”
Unlike those surveys, patient-reported measure tools ask patients very specific questions related to their condition and their life. For example, “Are you able to walk up and down the stairs? Can you walk without assistance? Are you able to maintain your own activities of daily living? Are you able to function better at home? Are you able to return to work?”
Q: What are the basics of collecting PRM data?
The first thing you need is baseline data for patient-reported measures. You need to know how the patient is functioning right now. How much pain are they having? How much mobility do they have? What activities can they perform? What activities can’t they perform?
Then, the patient receives the treatment or procedure, or some combination of interventions — surgery, therapy, or medication, for example. Following the intervention, you go back to the patient — in regular time intervals, say, every three months — to get additional data on those patient-reported measures, so you can proactively manage treatment progress and use that information as a teaching tool with the patient. You can also look at similar data across a specific patient population. Has the patient experienced improvement from their baseline? How does the patient’s improvement compare to similar patients at a comparable point in time? If the patient notes any deterioration in their condition, how can we reach out proactively to help them avoid unnecessary ED visits or readmissions?
Q: What are the benefits of collecting PRMs?
If we can segment a group of patients, such as people who have had hip replacements, then put together a good set of patient-reported measures and collect data from this group at three months, six months, and 12 months post-operatively, we can look at how the patients do over time. Then we can go back and really learn how we’re improving patient care. What does the data tell us about what works and what doesn’t? We can determine how to apply the right interventions at the best times to improve care, and take out unnecessary costs. This kind of data can help us put together good financial models for our care, and continually reduce costs while maintaining or even improving outcomes for the patients.
The PRM data can also be used to help clinicians and patients make more informed decisions about treatment. Prepared with this information, providers can sit down with patients and say, “This is your age, this is your condition, and this is what the data from our last thousand patients who are similar to you tell us. This is what their recovery looked like at six months, this is what their recovery looked like after a year, and this is what you can expect. Based on this, how would you like to proceed?”
A conversation like that might mean some people decide, “Gee, this surgery isn’t for me right now.” Some people may decide, “This sounds like it will be the best thing that ever happened to me.” PRMs have the potential to be very helpful to both patients and providers.
Q: What challenges will collecting PRM data present for providers?
The tricky thing about patient-reported measures is this data often need to be tracked over time. You could be collecting a baseline for each patient and ongoing data for six months or a year. This is really going to be challenging for health care organizations because that means they have to stay in touch with their patients over a much longer period of time than they generally do now.
There is also the question of how to collect and track such data for large groups of patients. How do we embed it into the work flow at the right place, at the right time? How do we set up reminders so that at three weeks, six weeks, six months, etc., we get additional input from the patients? How do we use or adapt technology to begin to do this?
We’re seeing some organizations use paper and pencil just to test this work in a single care setting, like an orthopedics practice. We’ve seen some teams test PRMs very simply, using Excel spreadsheets to analyze smaller bits of data. Some use the patient portals they already have to get the surveys to patients. Some are using some form of mailed surveys.
There are quite a few tools out there. There are different ways to implement the collection of patient-reported measure data, and organizations are going to have to be strategic and very thoughtful about how they begin to go down this road.
Through our Joint Replacement Learning Community, IHI is working with a group of about 30 teams. A little under one-third of the teams are currently tracking patient-reported measures from patients having total hip and total knee replacements. About another third of the teams have indicated they think they ought to start collecting PRMs, and they’re working on how to get started. And the remaining third said, “This is new to us, but we want to come along.”
I think the industry will probably divide much the same way, with probably even fewer people actually thinking about tracking PRMs, or with a good system already in place for tracking PRM data. Reports in the literature tell us that some physicians are not necessarily ready to incorporate PRM data into treatment planning, and we have not fully capitalized on using this kind of information for patient education and shared decision making. However, we do know that PRMs are currently included in Meaningful Use Stage 3 as the field envisions leveraging technology to get more direct input from patients to improve care delivery.
Q: Is it possible to generalize how patients react to providing this type of data?
We’re in the early stages, but in general, patients very much like to participate because it’s about them. It allows them to be part of the assessment process, and tell us, “This is what I used to do. This is what I would like to do. This is what I can do now.”
Q: A recent article in The Boston Globe described how some orthopedic surgeons are using FORCE-TJR registry data to help them and their patients make informed decisions about surgery. Is using data in this way common in the US?
There are places where it’s starting, and it’s usually around a specific condition, like hip and knee replacement or the long-term results of heart surgery. We see more of this in Europe, where they have large databases of patient-reported measures for very specific conditions. In the US, we don’t often see the entire feedback loop for the data being used beyond one patient. Some US health care organizations are using PRM data to help patients make informed decisions, and we hope to see this more often because it is really going to be powerful for us — particularly around specific conditions, drug treatments, surgery versus no surgery, medical versus other kinds of treatments — to really inform clinicians longitudinally how their patients do, and then use that information to plan their care for a population of patients.
Q: Is there a business case for using PRMs?
There’s probably not a business case yet, and there will likely need to be some investment. However, as we understand the data and how to use it more effectively, there will ultimately be a good business case. PRMs probably don’t fit into our current fee-for-service, volume-based health care environment, but such data will be critical in the future as we transition to a more value-based world that focuses on the management of population health.