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Granted: Patients' Right to Redefine RA Outcomes

Granted: Patients' Right to Redefine RA Outcomes

Numerous studies show that what matters most to rheumatology patients is seldom reflected in the outcomes assessed by their physicians. In fact, says Jeffrey Curtis MD, many rheumatologists don't collect outcomes information atJeffrey Curtis MD all and they seldom agree on what defines improvement in their patients.

To improve the effectiveness of outcomes measures and ultimately patient care in rheumatology, Curtis and other investigators at the University of Alabama at Birmingham have teamed with the arthritis support community CreakyJoints.org to launch a study that will capture, using electronic monitoring and collaborative information-sharing, data on rheumatoid arthritis and spondyloarthritis that matters to both physicians and their patients.

In this brief recorded interview, Dr. Curtis describes the effort, supported by a $1 million award from the Patient-Centered Outcomes Research Institute (PCORI).

Dr. Curtis is the William J. Koopman Professor of Immunology and Rheumatology at the University of Alabama-Birmingham.

The questions:

How did you become involved in patient centered outcomes research?

How did you sense the lack of patient voice in what you were doing as a rheumatologist?

Can you tell us a little bit more about the grant that's been awarded.

What I've read about this talks about using electronic devices to gather data in a unique or unusual way. Can you speak about that a little bit?

Do you have any insights as to what these kind of metrics might be compared to the kind of metrics rheumatologists are accustomed to using?

What would you say are the major challenges facing this project?

Key quotes:

Although the guidelines recommend that the patient's voice be considered, [it] is much less recognized as how we do that effectively. I've had some patients say "I don't really care about any of this stuff. I really want to accomplish X."

As patients have access both to their own data.. but also passive sensor data devices that you either wear or [are] embedded into smart phones patients, [they] will have much more cognizance of their own status and tracking measures that are important to them. That is going to have an impact on how we practice as physicians.

I think historically the most commonly used measure of RA disease activity, in clinical practice in the US, is nothing ... Your idea of doing well as Dr. X may be quite different than Dr. Y's idea of that same patient doing well, and in fact the patient probably has some meaning attached as to what it means to them to be doing well. So I think that it's still rather the Wild West out there, at least in the US, about how we are setting treatment goals and tracking patient disease activity...

To me, this is a key reason or answer to why we would want to be able to collect ... identifiable information ... Anonymous data really will fall flat when you try to couple it with other sources of data and I think ultimately the patient is not really well served by that.
 

Resources:

Arthritis Patient Partnership With Comparative Effectiveness Researchers (AR-Power)

Patient-Centered Outcomes Research Institute

Creaky Joints.org

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