Psoriasis patients currently do not have adequate treatments for all those involved. The patients can
become frustrated with how the success or failure of a treatment is determined. The patients also can be
frustrated by what is considered to be acceptable risks and side effects. There are multiple patient
groups on social media asking each other for help; in part because they believe the medical establishment
is not listening.
IDEOM (International Dermatology Outcome Measures) is an international movement to establish
new worldwide standards for determining outcomes (how the disease is responding to treatment) and
adverse events (the negative effects of the treatments). IDEOM works together with the US psoriasis
patient advocacy group NPF (National Psoriasis Foundation) as well as with an international coalition of
dermatology and rheumatology researchers GRAPPA (Group for Research and Assessments of Psoriasis
and Psoriatic Arthritis).
To assure that the new standards for outcomes and adverse events are patient oriented, IDEOM is
seeking psoriasis patient representatives from around the globe. The goal is to have the number of
patient representatives match the totals combined of dermatologists, rheumatologist, insurance and
government payors, government regulatory officers, pharmaceutical and device company medical officers,
and other professionals from multiple countries throughout the world.
PSORIASIS PATIENT REPRESENTATIVE JOB DESCRIPTION
A psoriasis patient representative is a nonpaid volunteer who must meet the following qualifications:
Personally have psoriasis or psoriasis with psoriatic arthritis
Must have frequent contact with many individuals with psoriasis or psoriasis with psoriatic
Must be willing to represent a consensus of these other patients views along with the representatives views o Local psoriasis patient support group o Social media patient support group o Hospital based patient support group o University Medical Centre based patient support group o Other Must be motivated to help update and make patient centric psoriasis outcome measures and adverse events classifications. Must be fluent in English (read, write, conversational) May live anywhere in the world Have internet access Have telephone access Willing and able to answer computer web based surveys in a timely manner Willing and able to travel to international meetings o Stipends to do such may be available on an individual bases Be personable and willing to speak out Be a team player Be willing to promote what becomes the groups decisions about standards for psoriasis outcome measures and adverse event classifications
PSORIASIS PATIENT REPRESENTATIVE APPLICATION Please email: firstname.lastname@example.org
What group of psoriasis patients you will be representing
A description concerning why you believe you should be chosen as a psoriasis patient representative for this important global effort