“There is power in numbers.”
What is Arthritis Power?
Arthritis Power is the first-ever patient-led, patient-centered, and patient-generated research registry for arthritis. Developed by CreakyJoints in partnership with the University of Alabama at Birmingham, it’s empowering in two ways. First, it helps you take control of your disease by tracking what’s important to you, and second, your data is donated anonymously to research.
“This is the first time patients can be involved directly in research without involving a doctor,” Seth Ginsberg, president and co-founder of CreakyJoints and the Global Healthy Living Foundation, told me. “People can ask questions they want researched.”
You can use Arthritis Power to track how you’re doing on a medication, the development of side effects, your ability to do something you want, etc. The results can be graphed and shared with anyone. You can give it to your doctor so it’s part of your chart or share the results with your spouse to help them understand the impact of your disease.
When you use Arthritis Power, your data is anonymized and donated to a research database. The goal is for health data from thousands of people living with various kinds of arthritis to support future research. Especially research into the questions that are important to you.
Patient Governor Group
“It’s been an amazing experience,” said Rachelle Crow, Chair of the Patient Governor Group. Rachelle, 29, lives in Detroit, MI. She has spondylitis and rheumatoid arthritis, and is a stay-at-home mom, taking care of her three-year-old daughter Lilian, as well as her grandmother who has Alzheimer’s. She is busy, but couldn’t pass up the opportunity to be part of the Patient Governors for Arthritis Power.
“It’s such a positive project — it’s re-energized my attitude about being part of research. It gives me energy,” Rachelle told me. The Patient Governor Group consists of twelve individuals with diverse backgrounds who meet monthly via teleconference and once a year in person.
“The Patient Governor Group oversees the Arthritis Power Project to make sure that the patient voices are heard throughout,” Rachelle explained. They discuss “what are we comfortable with and what other patients would want to do and share.” She continued, “we have spent the last eight months developing the app, making sure it meets the best and highest standards in security and privacy.”
Now that the app has been released, the Patient Governor Group will continue. “Patients in the CreakyJoints community will have the ability to chose research topics. These will go to the Patient Governors for approval.” Rachelle also explained that anyone who wants to use the data can apply to the group. “The Patient Governors can be seen as a guard — you have to prove you are worthy of the data.”
The broader use of Arthritis Power
“This is what gets me out of bed in the morning — the engagement with users or the Patient Governor Group. The creativity and enthusiasm about [Arthritis Power]” said Ben Nowell, the Director of Patient-Centred Research at GHLF. One of his responsibilities is to “identify opportunities for people living with illness to participate in research that is transparent, reciprocal, meaningful” and Arthritis Power certainly is that.
Ben is excited about the broader implications of Arthritis Power. He explained that many people with arthritis use the Internet as part of managing the disease. “How do we ensure that information is credible and evidenced-based, so you can make the best health care decisions based on the best evidence possible, not on who has the biggest megaphone or marketing department?” Arthritis Power “is an opportunity to put into people’s hands the way to filter information in easily understandable language.”
It does this not only by the donated data, but also in the future addition of the Opportunities section of the app. Ben explained that here you will be able to “find results of bigger studies, can see how [your] data can help.” You will also have access to polls and paid surveys.
“We live in a new era with different expectations,” Ben said. “As a social worker, it’s exciting to me to build bridges between different points of view — patient leaders, rheumatologist, and researchers. They all have a common goal.”
Join Arthritis Power at www.ArthritisPower.org. Arthritis Power is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, national network for conducting clinical outcomes research_. The app currently focuses on rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. You can access it anywhere you have an Internet connection, such as your desktop, laptop, tablet, or mobile phone. A mobile app is in development._
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.