The 2nd World Psoriasis & Psoriatic Arthritis Conference — organized by The International Federation of Psoriasis Associations (IFPA) — was held in Stockholm in June. The IFPA is a nonprofit organization made up of psoriasis associations from around the world. The meeting brought together dermatologists, rheumatologists, scientists, industry representatives and patients with the goal of broadening the global understanding of these diseases.

Highlights of the meeting included presentation of research on quality of life, function and participation, clinical research including treatment and epidemiology, genomics and proteomics, and immunology. At one session, there was a terrific discussion of how dermatologists and rheumatologists could best work together to manage patients who have both skin and joint manifestations of psoriasis.

Attitudes Toward Patient Advocacy not Universal

A striking feature of the meeting was the variation among countries in how patient advocacy was perceived. In the United States, we are blessed with a very strong Psoriasis Foundation, which is led by patients and advised by dermatologists. The Foundation produces a wealth of patient education materials, a brochure to educate insurers about psoriasis and its treatment, and even a few books to help educate dermatologists about the latest in psoriasis management. The Foundation helps reduce patients’ sense of isolation and helps empower them to work toward a cure; it even helps reduce the barriers to access to treatment.

At the other extreme, though, some patient advocates report that in their countries the physicians aren’t too keen on the idea of strong patient advocacy groups, believing that patients should learn about the disease only from their doctors. It almost makes me laugh (were it not so sad), as I couldn’t possibly offer patients all the information they want and need about psoriasis — all the treatments, all the science, all the things to do in different social situations — if it weren’t for the support of our Psoriasis Foundation.

Japan Coming Around

I learned that Japan represents a country in transition. Just a few years ago Japanese dermatologists wouldn’t have wanted patients to know anything other than what their doctors told them. Now they are supportive of a psoriasis patient advocacy group. It may seem surprising that educating patients broadly about their condition and its treatment has been such a big shift in Japanese medical practice.

Taking the Help That’s Offered

It’s not hard to see how some physicians might be nervous about the downsides to having patients involved in self-education and in taking responsibility for their own health.

We can reassure those doctors, though, having experienced all the positive ways that our Psoriasis Foundation helps patients and dermatologists. The key may be the strong relationship our Psoriasis Foundation has with dermatologists, involving them in the development and review of patient education materials and other advocacy programs. The Foundation offers us professional membership and a host of other opportunities to participate if you are interested!

Steven R. Feldman, MD, PhD
Chief Medical Editor

Dr. Feldman is the author of Compartments: How the Brightest, Best Trained, and Most Caring People Can Make Judgments That are Completely and Utterly Wrong. Xlibris, Philadelphia, PA, 2009. For information, visit www.compartmentsbook.com.