“Why doesn’t the doctor listen to me? No one is taking notes of what I think matters!”
Have you ever felt this way? Whether you are being seen at the office or are enrolled in a clinical trial, the information being recorded about how you are doing doesn’t always appear relevant to you. The doctor may tell you that the assessments he/she has completed show that you are doing well but you feel differently. For example, if you have psoriasis, and you are told that because the redness, thickness and scaling of your plaques are reduced by over 80% that you have an excellent response to the treatment. You look at yourself; there is still psoriasis on your face, hands, and upper chest. Moreover, everywhere you go people react negatively to seeing the psoriasis. Thus, you know that the treatment has failed. But no one will listen.
Times are changing. There is an international movement afoot to revamp all these assessments based on what the patients believe means success or failure of the treatment. In addition, the patients are determining what acceptable side effects are. Ameriderm Research, the research division of ADCS, is integrally involved in this global effort, specifically as it relates to psoriasis, lupus, and basal cell carcinoma nevus syndrome (a genetic disorder). Throughout the world, psoriasis patient representatives are being recruited to participate directly in this process by responding to surveys and attending meetings. For more information contact Dr Solomon at [email protected].