ArthritisPower Patient Governor Group

You wanted to have a major voice in arthritis research. Now you do.

the patient governors with seth

You can be heard through the Patient Governor Group.

The Patient Governor Group (PGG) consists of 11 patients representing the diverse backgrounds, perspectives and experiences of the CreakyJoints Community. The PGG leads  a nationwide research registry of patients with rheumatoid arthritis (RA) and spondyloarthritis (e.g., psoriatic arthritis, ankylosing spondylitis, and inflammatory bowel-related arthritis). The PGG works with the patient-powered research network called “Arthritis Power” created by CreakyJoints in 2014 in partnership with rheumatology researchers at the University of Alabama at Birmingham with support from the Global Healthy Living Foundation and the Patient-Centered Outcomes Research Institute (PCORI).

Yes, the research is led by patients.

“Patient Governors are the critical connection between research scientists and the CreakyJoints community of people living with arthritis,” says Ben Nowell, PhD, Director, Patient-Centered Research, Global Healthy Living Foundation.  “Patient Governors tell us what issues are important to study from their perspective. They speak from their own experience to flag potential challenges so we can adjust when preparing to do research.”

Shantana H., a Governor from Bridgeport, Connecticut asks, rhetorically, “What better experience than the one your body actually gives off?” Shantana has all the symptoms of RA although it doesn’t show up in her lab work. Now, she could be the first to find out why.

“I believe it is important to participate in patient-led research because it tells the health community that patients are really serious about being involved in the process of their own healthcare,” explains Rachelle C.-H. from Chesterfield, Michigan, Chair of the Patient Governor Group. “Often, doctors and researchers do their work with the unspoken assumption that patients are not interested in the process and only want to be passive consumers of their care.” I have found that this is simply not true.”

Rachelle, who has lived with autoimmune and rheumatic diseases since she was 19, adds, “Patients want to learn, we want to be involved, we want to have our voices heard and our experiences shared. With a project like Arthritis Power, patients can finally show that we want to be included as equal stakeholders in our own care.”

Kelly C., a Governor from Rockton, Illinois, has been muscling through RA most of her life but wasn’t diagnosed until the birth of her first child. She could barely lift him up: “Why do I think it’s important to participate in patient-led research? I can give a first-hand account of what it’s like to experience the disease and the concerns.” In 2013, Kelly was also diagnosed with osteoarthritis (OA). Her two pre-teen boys have forms of juvenile arthritis (JA): “Most researchers don’t have the ‘luxury’ of having first-hand experience with the disease. They don’t know what it feels like. They don’t know the financial implications it causes. They don’t know the discrimination we face.”

Since starting biologic therapy 7 years ago, Kelly C. has run marathons and climbed mountains in Alaska
elbow0001 When Kelly C. spent months in traction as a kid, family and friends would play games by her hospital bedside

 

 

Leslie R. agrees: “Research is not useful when it happens in a vacuum, led by research scientists who do not have much contact with actual patients.” Leslie, a Governor from New York City, learned she had Lupus and RA at 22: “To me, it is important to be involved in patient-led research because the results of the research greatly impact the lives of patients, and so as patients, we should have some say in it.”

Jon A. sees the PGG as empowering: “We have an opportunity to help know that (we) are not alone in dealing with this and all of this stuff that we’re doing, working with the American. College of Rheumatology—it allows us to take some control that we’ve never had before.” Jon, a Patient Governor from Olathe, Kansas, suffered from excruciating back pain before being diagnosed with Sero-Positive RA around the age of 40.

Carole W., an RA patient and semi-retired in Kona, Hawaii is very much “employed” as a Patient Governor: “Patient-led research benefits patients both individually and collectively. When you have a voice in the research agenda, and have a way to provide your unique perspectives and experiences, it helps you to feel like you personally have a viable way to fight this crazy disease,” Carole explains.” But of course, you can’t do that alone—the more people who get involved in research, the more effective it can be. That’s the beautiful thing about it; when we each contribute our part, together we actually can make a difference.” I know it sounds like a cliché,” she continues,” but it’s true. Research needs LOTS of voices to be most effective. It’s my hope that we can get a lot of people engaged in this effort as soon as possible, so that we can help expedite the process of coming up with treatments. Every day, new people get diagnosed, and existing patients find their symptoms getting worse. It’s time to get to work!”

Carole W. shopping for more comfortable options after RA-swollen and damaged foot joints made it impossible to wear her old shoes Carole W. shopping for more comfortable options after RA-swollen and damaged foot joints made wearing her old shoes impossible.

 

Carole, a scuba diving enthusiast, surveys fish and invertebrates to assist with marine research Carole, a scuba diving enthusiast, surveys fish and invertebrates to assist with marine research

 

 

Elizabeth F., a Governor from New York City who learned she had JA at 13 says she is “surprised” that patient-led research is new. “It’s the final piece to the puzzle along with clinicians and researchers. Together, we can find ways to live better” she says.  “We can build new questions and find better answer by working together. We can also not only help our generation but help the next and the ones after that”

The PGG not only speaks up for the larger community but reports back.

“They point out when concepts are confusing or require clarification to be acceptable to other research participants like themselves,” adds Dr. Nowell. “They also have a role in ‘translating’ science by helping to spread the word about new research findings that matter to people.”

“Patient-led research isn’t only great for research and finding better treatments for the arthritis community, but I also see it as a therapy for the patients who participate,” says Elizabeth F., a Governor from New York City, who was first diagnosed with juvenile rheumatoid arthritis( JRA) at 13 and later Ankylosing Spondylitis.

 

Britt J. of Los Angeles, who pens the The HurtBlogger.com, has grappled with both Undifferentiated Spondyloarthropathy and RA for over twenty years. As Vice-Chair of the PGG, she feels hopeful.  “A lot of my ideas and hopes and goals just as a patient for years (are) coming to fruition.”  One of her biggest goals? “Helping the 7 year-old version of myself that wasn’t heard as a patient.”

Britt J. holds medal after completing her first 5k in September 2013, 2.5 years after she was told she would never run again Britt J. holds medal after completing her first 5k in September 2013, 2.5 years after she was told she would never run again
Britt wedding Britt J. marries the tall, dark and handsome man she had always dreamed of—June 2012

 

 

CreakyJoints is grateful for these individuals’ participation.

Would you make a good Patient Governor?

You may be considered as a future candidate if you are a patient who:

  • desires to learn more about arthritis through research
  • believes in the power of patients to transform and translate arthritis research
  • engages with the CreakyJoints community on social media or in person
  • enjoys speaking or writing about your experiences
  • listens well to others with arthritis to help draw out their ideas and opinions
  • advocates on behalf of others with arthritis

 

Nowell says there are other opportunities to volunteer to advance patient-powered arthritis research:  “We are also looking for people who would like to be “patient research partners” – those who are interested in being contacted directly by researchers when they are in the planning stages of a study. Researchers often need the “inside” perspective that patients can provide through group discussions or even a quick conversation or email exchange. These are not Patient Governors, but it’s a good proving ground for future Patient Governors. Not everyone needs to take a leadership role, but each person who signs up to participate in Arthritis Power helps advance our understanding of the disease.”

 

If you are interested in becoming a Patient Governor in the future, contact Dr. Ben Nowell at [email protected]

 

To learn more about the current group of Patient Governors, go to: https://creakyjoints.org/patient-led-research/patient-governors-group/

(back row, l to r) Bryan L., Elizabeth F., Shantana H., Jon A., Whitney W., Kelly C., Leslie R., Marta G. (front row, l to r) Seth G., Rachelle C-H, Britt J., Jonathan H., Carole W.