The Three-Fold Cord of Rheumatology

As participatory medicine gains footing across the globe, medicine can advance more rapidly. Recently, Katherine Leon and a handful of other women with Spontaneous Coronary Artery Dissection (SCAD) initiated the first study of their disease through Mayo Clinic.² This model of collaboration has also been successful in cancer research.³

In the United Arab Emirates, people living with rheumatoid arthritis participated in numerous meetings of the Emirates Society for Rheumatology (ESR) in 2011.⁴ According to Al Maini, MD, “This scheme is part of our new medical education program that means whenever ESR meets we will make a slot available for patients to interact with rheumatologists.”

Charting a Course of Patient Contribution

Research can be accelerated by direct patient input as patients can contribute essential information; no one knows the specific details of a condition more intimately than a person who lives with it. Second, there is no more powerful force for strengthening the second thread of technology than those who can benefit from the breakthroughs; the patient voice advocates most effectively for innovation. Patients also share knowledge with one another about what is effective in management of rheumatic diseases. Patients want to do all they can to help strengthen the cord.

Dr. Osler also said, “He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.” While Dr. Osler confessed that he longed for a back door, he carried on. He charted a course for us to consider.

Kelly Young is author of the RA Warrior website and a founding board member of Patient Insights, LLC, and the Rheumatoid Patient Foundation.

References

1. Saleh A. Rheumatoid arthritis: Novel strategies for an old problem. Available at www.naama.com/pdf/rheumatoid-arthritis-strategies-assil-saleh-md.pdf. Accessed March 16, 2012.
2. Torrey T. The SCAD ladies—Where patient empowerment meets rare diseases. Available at http://patients.about.com/b/2011/10/17/the-scad-ladies-where-patient-empowerment-meets-rare-diseases.htm. Published October 17, 2011, Accessed March 16, 2012.
3. Camporesi S, Marsico G. Cancer Contribution: An innovative example of participatory medicine in cancer. Available at www.ecancermedicalscience.com/comment-editors-views-article.asp?doi=10.3332/ecancer/editorial9. Published July 4, 2011. Accessed March 16, 2012.
4. Pfizer. Patients teach doctors about arthritis under new medical education initiative. Available at www.zawya.com/story.cfm/sidZAWYA20110523063432. Published May 23, 2011. Accessed March 16, 2012.