Last month I had the privilege of traveling to Atlanta to meet with the ten other patients who make up the Patient Governor Group of the CreakyJoints research network known as “Arthritis Power.” Getting together with this group is always inspiring, but our second annual meeting was especially exciting as we had the chance to see some of the early data that the fantastic patients in the CreakyJoints community have contributed to this important patient-led research initiative.
About the data we collect
Most of the data we collect in the Arthritis Power registry is referred to as “patient-reported outcome” information (PRO). Already this information is helping us see how participating members of the network are feeling in different domains like fatigue, physical function, sleep disturbance, and pain interference as compared with the general United States (U.S.) population.
These domains, and the statistical comparisons with a U.S. “norm” are thanks to the National Institutes of Health (NIH) which developed the set of PRO tools called PROMIS. PROMIS stands for Patient Reported Outcomes Measurement Information System. The NIH website (www.nihpromis.org) describes PROMIS as “a system of highly reliable, precise measures of patient–reported health status for physical, mental, and social well–being. PROMIS tools measure what patients are able to do and how they feel by asking questions. PROMIS’ measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment.”
Comparing Arthritis Power PRO scores with the general U.S. population, paints an early and interesting picture of what it is like to live with a rheumatic condition.
Sneak peek at the early data
When it comes to fatigue, the Arthritis Power patient score was 64.32. Compared to the U.S. average of 50, the fatigue score of the study participants is not just higher, but higher in a statistically significant way. The scores for pain interference (which measures how much pain interferes with completing and enjoying daily tasks and activities) are similarly high at 64.23 compared to the average of 50. The sleep disturbance score for study participants was 59.42; closer to the average of 50, but still significant.
When talking about physical function, the PROMIS measures can be a bit confusing. Here, a lower score implies a person is more symptomatic or “worse.” The physical function score for Arthritis Power participants was 37.25, again compared with an average U.S. score of 50. Without going into too much statistical detail, this gives early evidence that participants in Arthritis Power are about one standard deviation away from the general public.
Together these scores start to tell a story that any patient living with a rheumatic disease immediately recognizes. We feel more tired and hurt more than the average Joe. But, what can these numbers do for you? In the short term, your individual PRO scores may help you manage your disease with the help of your doctor. Is the treatment you started a month ago helping your physical function and fatigue? Right within the app, you can look at a graph of your own results and see the change over time. One patient governor was able to look at her own graph and tell when her new medication started working! Seeing the positive change in her data reassured her that she made the right decision to change therapies. Another patient governor said his data may make his doctor more confident when prescribing him pain medication.
How my data has helped me
Personally, I know that my data has helped me show my new rheumatologist an accurate picture of my functioning day to day. Because I am seronegative for rheumatoid arthritis (my blood tests measuring inflammation are never positive), it is often difficult for my doctors to tell how I am doing (i.e., my level of disease activity). The information I entered into the Arthritis Power app help me show my new rheumatologist that there is a real problem that needs to be addressed. I was able to show the new doctor how previous medications and interventions impacted how I was feeling and functioning. Having this information was extremely valuable when it came to helping a new doctor get oriented to my condition.
Our hopes for what the data will tell
The Arthritis Power Patient Governors have lots of hope for what the data will be able to tell researchers about how people with arthritis are really feeling. The possibilities for rheumatology research questions are endless, but they will be much easier to answer with long-term or “longitudinal” data (the same information collected multiple times over months or years).
CreakyJoints and the Arthritis Power Patient Governors are hoping that as we and other people living with rheumatic conditions donate their data to this important project, you will also let us know about the research questions that are important to you. As we discover new things about arthritis, we plan to share this information in a variety of ways within the CreakyJoints community and beyond so that you are able to make more informed health care decisions with your physician and other care providers. In this way the project can live up to its goal of being truly patient-centered.
All in all, traveling to Atlanta to meet with my fellow Patient Governors helped reinvigorate my passion for this project. As a group, we usually meet regularly on the phone, so it was terrific to get a chance to meet in person, catch up, and discuss how we are going to move forward with this important patient-led research initiative. We come from many different backgrounds, but each of us firmly believes in the importance of patient-led and patient-focused research.
I am incredibly hopeful for the types of questions we will be able to answer if the CreakyJoints community (and others with rheumatic conditions!) continues to participate and donate their data. If you would like to learn more or if you have ideas for research questions you would like to see answered, click on the “Research Hub” tab at CreakyJoints.org or check out ArthritisPower.org to sign up!