The industrial age is waning and we are rapidly moving into the information age where people have ready access to the internet and overwhelming amount of information. People can type a search term in Google and be presented with all kinds of information almost instantly. Now confess – you search for information about RA on the internet. Here is a list of some search terms people used in the last few days when finding this blog through various search engines: regulatory b cells, RA blogs, methotrexate brain fog, infusion, Orencia cost, RA and brain fog, USA Today rheumatoid arthritis, lymph node and Enbrel, Humira and headaches. Those make sense because they represent topics about which I’ve written.
Those suffering with a chronic disease like RA are prone to seek out all the information they can in order to understand the disease and make informed decisions. However, as information consumers in an information age, RA patients must be careful and learn to evaluate the avalanche of information that is at our fingertips. Georgetown University Library has an excellent resource called Evaluating Internet Resources.[i] According this site,
“Unlike similar information found in newspapers or television broadcasts, information available on the Internet is not regulated for quality or accuracy; therefore, it is particularly important for the individual Internet user to evaluate the resource or information. Keep in mind that almost anyone can publish anything they wish on the Web. It is often difficult to determine authorship of Web sources, and even if the author is listed, he or she may not always represent him or herself honestly, or he or she may represent opinions as fact. The responsibility is on the user to evaluate resources effectively.”
When accessing information on the internet, the Georgetown University librarians encourage people to consider the author, purpose, objectivity, accuracy, reliability and credibility, currency, and links. Let’s apply these criteria to several popular online resources related to RA.
Johns Hopkins is one the most respected medical centers in the world as evidenced by rankings.[ii] This site presents links for disease information, news, patients, doctors, researchers, and even an “ask the expert” link. The authors are doctors and scientists who have spent years studying rheumatoid arthritis and gathering research. Given the credibility of Johns Hopkins and the scientific, peer-reviewed basis of the information, it is likely to be very accurate, objective, reliable, and current. This site can be trusted when it comes to details about RA. There is on this site, however, very little information from the patient’s point of view which is an important aspect when dealing with a chronic disease.
AARDA is a non-profit organization devoted to advocacy for all sorts of autoimmune diseases including rheumatoid arthritis. With multiple staff members, a volunteer board consisting of doctors and patients, and transparent financial information, this organization is likely to possess credibility and accuracy in their information given the fact that their success depends on it.
Newspapers and Popular Press
These publications often present information and news about chronic diseases. Reputable journalists follow a code of ethics which includes the following: 1. seek truth and report it, 2. minimize harm, 3. act independently, and 4. be accountable.[iii] These publication sources can generally be trusted and rely on good reporting to stay in business. Like with any publication, there can be times when reporting is not accurate. For example, there was a recent USA Today article about RA at which many patients took offense and wrote to the editor and author. The article and title were later revised.
This site contains general information about RA and hosts many discussion forums. My good RA blogging colleague Lene (check out her excellent blog at The Seated View), along with others, are expert moderators of this site. This is a great place to come and ask questions and learn from other RA patients. The authors vary but the site includes links to much information which is managed by multiple experts. Individual patient stories and experiences are important for understanding the disease and can give assurance and understanding. But a single patient’s experiences with symptoms or a medicine may not be the same for another patient and readers must be careful not to directly apply all experiences to their own situation. The moderators know this and give caution when necessary.
I write this blog and make regular posts about various subjects related to RA. But on what authority do I write? I’m not a trained journalist, a doctor, or an RA scientist. I am a patient who is attempting to document my own experiences with the disease. When I do write, I try to cite sources and support any ideas that are not my own. Blogs provide an important patient perspective and I invite you to regularly check out the blogs I follow. Just remember that these sites are typically not peer-reviewed and most bloggers are not trained journalists.
For Profit Companies
There are many companies whose sole goal is to make money. And these companies may try to monopolize on the suffering of those with chronic diseases by selling products that may or may not be based on research. In such cases, the purpose, objectivity, accuracy, reliability and credibility of information provided must be seriously questioned. While some products may indeed be helpful, I’m not going to purchase a new drink that a company claims cures arthritis without credible research evidence.
In today’s information age, it’s critical that we learn to be good consumers of the barrage on information that is at our fingertips. The information to which we have access can help us be better patients and advocates. Just use wisely!