Is era of patient-reported outcomes at hand?
That's what one researcher hopes
The age of the process measure may be nearing its end, or at least the end of its heyday. But is it possible that the outcome measure as most people think of it is dead before it really gets off the ground? Not dead, but it may have to share the spotlight with another kind of outcome measure, says Patricia Franklin, MD, MBA, MPH, a professor and director of clinical and outcomes research at the University of Massachusetts Medical School in Worcester. She thinks the era of patient-reported outcome measures is at hand, and she has played a part in ushering it in.
As a medical director and a trained health services researcher, she thought that outcomes measures were the way to go in advancing healthcare quality. She was gung-ho on the idea and was talking to a colleague — a high-volume orthopedic surgeon — about creating a database of outcome measures when he brought up not just using outcomes, but including patient-reported outcomes, and having the data available to physicians in real time, trended to help physicians better understand how to help patients.
This was back in 2007, and since then, she has seen that idea for a total joint replacement outcome registry go live at the University of Massachusetts, and then spread beyond to dozens of facilities across the country.
For some physicians, the idea of using something as subjective as how a patient feels as a measure of success, rather than what something objective like a blood test or X-ray says, is the antithesis of science. Maybe you include it, but do you give it weight? Yet adding patient-reported measures is not just something that a few researchers are thinking about. Entire countries are doing it — the UK, New Zealand, and Sweden now contact every orthopedic patient after surgery to ask about pain and function, says Franklin. The University of Massachusetts does so for every total joint replacement patient now, too.
What started at the Worcester, MA, facility is now a nationwide program that 130 surgeons volunteered to be a part of, says Franklin.
The information comes from a validated survey computer program that patients complete at every physician appointment, before and after surgery. They answer questions about their pain and physical function and ability. The tests in the initial study at the University of Massachusetts were scored immediately and trended over time. Franklin says this enabled physicians to talk to a patient about how he or she was feeling on a given day compared to the previous appointment, or a month ago, and discuss options that might not include surgery based on that readily available information. The surgeon still makes the decision about whether the patient was a good candidate for surgery, but if the surgeon says yes, sometimes the patient will say no after seeing an improvement in function that might not have been evident without that data being available.
"In the traditional registries about total joint replacements, the information that was captured was about how long the joint replacement survived and if there was a need for a revision," says Franklin. Pain was not a factor, nor was function.
Doctors can also benefit by being able to see which patient groups seem to benefit from which kinds of treatment. For example, if they have access to real-time data — or even relatively quick-time data like the current study, which gets data to the physicians every quarter — they might see that patients who have certain characteristics do better with a specific type of implant or procedure, or that others do best with a special post-surgical regimen. Maybe one would find a cluster of patients who aren't doing well and discover they all have been in a particular unit on the same day of the week. A doctor could also provide statistics to a patient about others like him or her: In the 40 patients of his gender, age, weight and activity level that have had that implant this year, 35 of them have done well, and the five who did not weren't compliant with the plan of care. It gives patients and physicians more and better information on which to act, says Franklin.
The doctors involved in the latest study had to be taught to use this kind of data, Franklin notes. "They did not know how to make use of information on pain and function, as opposed to information on complications and revisions," she says. Those physicians were culled from a list of surgeons who were high-volume practitioners and were randomly called until they had enough willing participants to fill the study.
It didn't take long: This kind of research is gaining attention, Franklin says. When the government was handing out stimulus money, she wrote a grant looking to see if she could create a new program to promote a vital sign for pain and functionality to use in primary care offices. The grant proposal got a lot of interest and attention from the National Institutes of Health, but it crossed so many different areas of interest that they did not know under which heading to fund it. So they opted not to. But it gave Franklin more of a push forward in this area.
So far, she hasn't seen it expand much beyond orthopedics — a plastic surgeon, a couple of rheumatologists. "I do not think it has to be limited to perioperative assessment," she says. "I haven't seen it grow much other than doctor by doctor."
Which brings Franklin to her proselytizing moment — what she thinks every quality manager can and should be doing now that can be simple and make a difference to patients: If something is a high-volume, high-cost procedure, add a couple of questions to your patient satisfaction surveys about pain and functionality. The doctors probably ask these same patients about pain and function before they have surgery and have that recorded someplace. Include the responses post-surgery in the same place.
If you want to go a step further, make friends with the IT department and create a database of those patients who have that high-volume, high-cost procedure. Think hip replacement, or total knee. But it does not have to be about joints. It might be bariatric surgery at your facility. It might be something cosmetic. This data is useful now. Franklin says that even before they started their study, she put these questions on the total joint replacement post-surgery surveys, and they were able to use the data for other purposes — to find gaps in performance, or even areas of expertise you did not know you should be touting.
Someday, these questions will be important enough to enough stakeholders that they will be mandated, Franklin says, noting that the Centers for Medicare & Medicaid Services is already looking into her work as part of a review of patient-reported outcomes. That it isn't currently a requirement does not mean it is not important and can't have an impact now.
"Patients are not the barrier to this," she says. "They love to help, to be asked and to respond. And if you can help patients do better, well isn't that why we are here?"
She gives an example: Total hip replacement usually results in a dramatic decrease in pain for everyone. For most people, there is a similar dramatic functional increase. But not for all patients. "Being able to tease out the reason why some people do not do as well, which are related to co-morbidities, which are related to things that the patient can control, and which you can counsel the patient to just expect to live with, well that would be a wonderful thing."
There are at least 10,000 patients in 22 states every year who get to report how they think they're doing, Franklin says. She'd be perfectly happy to see anyone add some more.
For more information on this topic, contact Patricia Franklin, MD, MPH, MBA, Professor, University of Massachusetts Medical School, Worcester, MA. Email: firstname.lastname@example.org.