How to Find Psoriasis Research Information Online
Keeping up to date is one of the best things you can do in terms of managing your psoriasis.
The treatment routes we follow tend to be very prescriptive, but if you know what you want, then you will find that your healthcare team is generally open to accommodate your wishes as long as your prepared to be stubborn and well informed with high-quality information.
Low-quality information an excellent prompt for discussion, but if you want to grind the wheels into an action of a new plan (that probably involves way more paperwork for your doctor) you need to show you know you're stuff.
The *best* places to start
Congrats- you're already at one of them. Here at PlaquePsoriasis.com, there are loads of articles that can help you get on your way. As you already know this, I will move swiftly onto some other options.
There are a surprising number of psoriasis associations separated geographically- to support the different needs of people in different countries. There are so many that there is, in fact, the International Federation of Psoriasis Associations (IFPA) to coordinate activities like World Psoriasis Day.
My favorites are The National Psoriasis Foundation in the U.S and The Psoriasis Association in the U.K. Both places have very high-quality information on their sites and both offer extensive services for free that will help you find the information you need. If you don’t like perusing their well-researched articles, then you can access them by phone and by email.
What I like about these sites is that they have read all of the research for you and summarised it in easy to consume articles without all of the heavy jargon you get when you search for the original research papers. If science words scare you then this is your happy place.
Published research papers
Unless a private company (like a pharmaceutical company) conducts the research, the findings are usually available online in many biomedical databases. My favorite and one of the most popular is PubMed.
You can use the search bar to find what you are looking for such as Psoriasis AND biologics or use an advanced search if you have more specific search parameters. More specific search criteria include the date of publication if you only want the most recent research findings, or search via author name if you have a favorite author (I love articles by Chris Griffiths- a forward-thinking Dermatologist in the U.K for example).
There is almost always an abstract which essentially summarises the findings, these are great for an overview and are free. If you want more detail, perhaps you need the whole article to check the meat behind the summary if it's vague then you will have two options. If the article is open source (look for the term open access on the top right) then you can download the PDF for free.
Most articles you have to pay for. Prices vary widely depending on the original publisher- but some do special rates for patients who are buying for themselves. The last one I purchased at this rate cost me £35, so they still are not cheap but full price articles are usually over £100.
You can access the NHS evidence database at www.evidence.nhs.uk. At the time of writing, there are 2092 responses to the search term psoriasis and covers topics such as drug guidance and policy, secondary evidence and medicine reviews (my favorite- I enjoy reading where the ‘official’ knowledge gaps are.
NIHR Dissemination Centre
NIHR Dissemination Centre are sparse on psoriasis information, but the results are fascinating reading plus they write the research article in human speak, so you don’t need to get overwhelmed- something easy to do in PubMed (even for me with a Masters Degree in Biotechnology).
There are only two articles that come up when you search for psoriasis, but I enjoyed learning about vitamin D in steroid solutions for scalp psoriasis.
So what is low-quality information?
This is the information you find in forums. Personal stories of success, and the things you read in the newspapers. Often journalists are not qualified to write about medical studies and it has been known for headlines to be rather sensationalist... Psoriasis Cure Moisturizer anyone?
Information from all of these sources is valid to start a conversation with your doctor, but as everybody is different, and some people misunderstand what they learn- it's important not to take any of this information as advice until you have cleared it with a qualified professional.
Even better- use the information that you come across in everyday life as a prompt to dig deeper into the higher quality research before visiting your doctor.
How often do you experience brain fog?