Joint Decisions: Empowering People with Rheumatoid Arthritis
When you live with rheumatoid arthritis (RA), becoming empowered and informed is an essential component of making decisions about your health. Joint Decisions is a partnership between CreakyJoints and Janssen Biotech Inc. that with the help of consulting bloggers endeavors to do just that.
Megan Park is an actress with RA and she is showing that chronic illness doesn’t have to be a career killer when you work in entertainment industry. She has announced her RA through Joint Decisions, showing that, like so many other people who live with RA, she is able to manage it and continue working.
Sharing her experience through Joint Decisions has been very special, said Megan. “I hope I can help someone else living with the disease feel less alone and find the support and resources they need to live a healthy life!”
And that’s exactly the mission of this program. Sarah Aoanan, Senior Fellow with the Global Healthy Living Foundation (GHLF), parent organization of CreakyJoints, and Manager of Joint Decisions, explained that it is an educational program designed to “empower people living with rheumatoid arthritis to take more ownership in the decision-making process and the relationship with their rheumatologist.”
The program started a year ago with several webchats and an Empowerment Summit held in Boston. This year's program has included a number of Blogger Summits, in which the dozen bloggers consulting on the development of the program meet, sometimes by telephone, other times in person. Joint Decisions will continue in 2016.
Connection and education
This connection has been incredibly powerful, said Mariah Leach, one of the participating bloggers. “It’s been really cool to get to know other bloggers. It’s kind of like meeting a celebrity, it’s been very empowering to meet these people.” She went on to explain that Joint Decisions is committed to fostering this online connection with a wider audience through web chats and follow-up Twitter chats.
There have been four topics of this part of the program. Understanding the important goal of movement and nutrition, managing the emotional challenges of life with RA, building your care team, and this coming weekend, breaking down barriers in patient and rheumatologist communication. This will be broadcast live from the Annual Meeting of the American College of Rheumatology (ACR) in San Francisco.
Throughout the past eight months, the program has developed a number of resources for “all stages of the RA journey, that people can download,” said Rebecca Genin, Communications Manager, Immunology, with Janssen Biotech Inc. This enables people with RA to “really get connected and become part of the community.” She explained the pharmaceutical company’s involvement in this kind of program, saying “Janssen’s mission is to transform lives, not only through treatment, but by empowering people, to give them the tools to make informed decisions that can lead to the best possible results for their health.”
“It’s great to see them interested in the patient perspective,” said Mariah. This commitment to helping people become good advocates for themselves is the core value of the Joint Decisions program. “There are lots of ways that patients could learn to be better advocate for themselves,” Mariah continued, “it can be a lonely road to live with a chronic illness that no one really understands, except the people who have it.”
This is exactly why Joint Decisions has involved a dozen RA bloggers. “There are no better people to give us the insight than the people living with RA and facing the challenges every day to help us develop the tools and resources people need,” Rebecca stated.
A passion project
Joint Decisions is a passion project for everyone involved. Sarah from GHLF explained that she came to advocacy work through her own personal experience after her best friend was diagnosed with breast cancer at age 20. “It really opened my eyes to the policy side of health, how people are affected and treated,” she said. “This is passion work, influenced by my experience with her. If she’d had an online network like CreakyJoints, she wouldn’t have felt so lonely and stigmatized. It would have been easier for her to cope with her illness.”
Mariah likewise came to advocacy work via her passion, helping women around the topics of pregnancy and parenting with RA through her blog and hosting the Facebook group Mamas Facing Forward. She was drawn to this through her own experience as a mother of two boys, aged one and three. “I was drawn to provide my story and connect with others, so other women going through it wouldn’t feel so alone.”
This same passion and commitment is evident when you read posts from the other bloggers involved with Joint Decisions, or talk to them on Twitter in one of the Joint Decisions Twitter chats. “The reason I love this job so much is getting to work with the bloggers,” Rebecca said. “Each and every day, it reminds me that one person really can make a difference.”
Register for the Joint Decisions webcast on November 7. Real Talk: Breaking down Barriers in Patient and Rheumatologist Communication will be hosted by Dr. Laurie Ferguson, VP of education at CreakyJoints, six RA bloggers, two rheumatologists, and the comedian Martt Iseman, who also has RA.
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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.