Transparent objectives of a patient community
As the author of this blog, I’m completely transparent about why I’m here: Stunned at learning what so many RA patients endure, I committed to doing everything possible to change that. The 3 specific goals have been the same for 3.5 years on the About Page, as created during the first week!
During these years, I’ve spoken to hundreds of patients personally and made thousands of online friends. We’ve accomplished a lot.
- Together, we have shared the news as science has begun to catch up with what patients have always experienced with Rheumatoid Disease. Investigators have shown that “Rheumatoid Arthritis” is actually a systemic disease, which likely begins years before it affects the joints.
- As various criteria and recommendations for care were published, we shared experiences and communicated honestly about the disease and treatment. As a result, I published The 10 Fundamentals of Rheumatology Care for Rheumatoid Patients, a manifesto of patients’ needs.
- We’ve begun the process of changing the name of the disease so that it’s not called by only one of its symptoms, creating confusion and numerable problems for patients & researchers.
I’m not sure whether all the rheumatology patients are aware, but we are only one large segment of a greater patient empowerment movement. It’s something of a civil rights movement sweeping the world. It begins with the fundamental right of patients to access medical information, especially their own data. Some patients already experience full shared decision making and others still can’t see their lab tests.
Like all movements for change, healthcare advocates encounter resistance. In the past few days, we’ve encountered two types of opposition from healthcare professionals online. One was direct criticism of patient efforts to acquire lab results. That horse has already left the barn, I think.
The other was a suggestion that an online patient community is not representative of actual patient populations since only certain patients go online. While the jury is out on that question, it is not specifically applicable to the online rheum community for three reasons.
- The data within the profession are sufficient to support our positions. Clinical trial data are enough to show treatment response rates that are unacceptable. And the American College of Rheumatology’s own reports say that patients are not treated according to their recommendations.
- We use published data in RPF resources. The data used in the resources printed by the Rheumatoid Patient Foundation were obtained from published journal sources, not social media, so that criticism is inappropriate.
- Our rheum community is reflective of large published studies. In several ways our community echoes what is reported in the huge 2010 study by Stanford’s Dr. Strand and by Dr. Fred Wolfe’s Data Bank.
Patient communities are here to stay. And growing like wildfire.
Every time, I’m a little bit intimidated by the few who do not want to see change, I take a special medicine which cures every fear instantly. This medicine is free of charge and available to anyone who needs it. It is reading a few of the 20,000 comments on this site, or the hundreds of thousands more that have been made via Facebook, Twitter, email, or messaging.
Most of these comments are made by brave patients who share because they know that it might help someone else. Tens of thousands of voices are represented. And they promptly remind us how critical our battle is, and that we must not falter.
If you have doubts, I challenge you.
I challenge anyone who has reservations about the goals of this site or the nature of this community to read the past week of comments. By my count, that’s about 165 comments. The scope of recent comments alone is enough evidence to clearly demonstrate the essential need for change.
If you support our goals, I challenge you.
More good medicine to inspire you! You’ll be glad you visited these sites:
- E-Patient Dave’s blog: E-patients.net
- Regina Holliday’s Medical Advocacy Blog
- Society for Participatory Medicine
- 5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis
- Significant Numbers of RA Patients Don’t Receive Recommended Care
- Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
- Some Rheumatologists Don’t Understand How Much It Hurts
- Energizing E-patient Engagement – Collaborations that Count