I wanted to share an opportunity for patients living with psoriatic arthritis (PsA) to contribute to a project with Rheumatology Nurses Society (RNS). I agreed to spread the word because I think RNS is a great group of healthcare providers doing important work towards giving patients more of a voice within healthcare, and I think the program they are offering could be beneficial to patients living with PsA. I have not been compensated for sharing this information. Here is the information I have been given about this project:
We are launching a brand-new program this month that is entitled Dear Diary: Unlocking the Secrets to Better Care of Patients with Psoriatic Arthritis. We are looking for 50 patients with psoriatic arthritis who are interested in participating in this 12-week initiative.
In this program, patients will complete a weekly online diary entry where they will be encouraged to write about a variety of topics related to their disease. Weekly prompts will offer suggestions on various topics to tackle, but participants will have the flexibility to write about anything on their mind that is related to their disease. Please note that, at least in this initiative, we are only enrolling patients with psoriatic arthritis. There may be opportunities for patients with other rheumatic conditions in the future.
Each enrolled patient will be paired with one or more healthcare providers. These providers will not receive any information related to the identity of any patient beyond their first name. They will only receive an email when their matched patient has submitted a diary entry, and they will then be asked to write a response. Due to privacy concerns, provider responses will not be shared with participating patients directly. However, our project administrator (me) will review all diary entries and compile an electronic document at the end of this project that contains a variety of patient diary entries and provider responses so that all participants can get a sense of what patients with psoriatic arthritis have been writing about and how the healthcare provider community responded to some of the challenges they have been reading.
Our hope is that participants will find that jotting down their feelings and emotions while emptying out some of the clutter in their head will be extremely helpful. Our hope is that participants will submit one weekly diary entry during each week of this project. It is OK to skip a week or two as personal circumstances arise, but we’d like to find participants who will be as active as possible on our platform.
Anyone interested in participating in this project can click here (https://www.surveymonkey.com/
r/KNP8575) to enter their contact information. We hope to complete enrollment and begin this project within the next 2 weeks, so someone will contact folks who register shortly. If anyone has any questions or would like any further information, they can feel free to contact Sadie Montanus, RNS Education Coordinator, at firstname.lastname@example.org.