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Managing psoriasis is a different experience for each person. As someone living with psoriasis, one of the best things you can do is define your unique experience with this chronic skin disorder—your symptoms, what triggers those symptoms, how it impacts your quality of life, and what treatments work and why. One strategy you can use is collecting and maintaining a personal health record.
What is a personal health record?
A personal health record (PHR) is a database of all documents related to your healthcare. It is separate from the medical records kept by your healthcare providers, though it should include copies of those documents. Here are some of the things that a personal health record should include:
- Diagnostic reports and notes from your initial diagnosis of psoriasis and any other conditions related to psoriasis (such as psoriatic arthritis)
- Any documents provided by your healthcare provider, such as notes on skincare routines and triggers to avoid
- Insurance paperwork
- Receipts and other documents related to medical expenses
- Information on your medical history, including immunizations, any history of illness, injury, medical procedures, and/or hospitalizations
- Information on any past and current treatments for psoriasis, including copies of prescriptions, dates the therapies were used, the dosages, and the results of these treatments
- Other health information, such as the results of blood panels and exam notes from your primary care physician
- Contact information for your healthcare providers
- Emergency contact information
- Your own notes, such as notes that summarize your appointments
In addition to keeping a PHR, people with psoriasis may want to keep a symptom diary. A symptom diary is a day-to-day record of your experience with psoriasis—what symptoms you are experiencing, potential triggers (like food, injuries, and stress), and your experience with treatment.
Benefits of keeping a PHR
This might seem like a significant investment of time and energy, but it can have a number of important benefits:
- It can give you a better overview of the progress you’ve made with psoriasis treatment, including what has worked and what hasn’t worked.
- It can give you a better sense of control, which may help you cope with the uncertainty of psoriasis.
- It can let you locate relevant information that you need to share with your healthcare providers or insurance providers.
- It can quickly bring a new provider up to date on your health—for example, if you need to see a specialist for another condition or you need to seek a second opinion from a different dermatologist.
- It can help you better understand what you are getting from treatment, identify what you need from treatment, and be better prepared for your appointments with your healthcare providers.
Remember that you do not have to compile all of this information in one go. You can treat this like a project that you build over time. And once you have the pieces in place, it’s just a matter of keeping it updated and maintained.
Find a system that works for you
What’s the best way to organize all of this information? Like other aspects of managing psoriasis, that answer will be a little bit different for each person.
You may want to keep physical copies organized into file folders. You may want to maintain an electronic PHR, with digital copies or scans of your lab reports, insurance claims, and other documents (there are even some web-based services that can help you build and maintain a PHR).
Whatever methods you choose, it’s a good idea to keep your PHR in a secure place and keep a backup copy.
