Amazingly, nearly everyone has a powerful computer in their pocket or purse.
It’s so easy to pull out our smart phones to answer life’s most mundane, trivial, or complex questions.
Unfortunately, it’s just as easy for a person diagnosed with a serious, chronic disease like autoimmune arthritis to read an unlimited amount of information about their illness, which can be overwhelming to those seeking answers and direction about disease management.
Here are four strategies to help arthritis patients (or anyone living with a chronic disease) find credible and actionable information.
1) Do Your Homework Ahead of Class
Sometimes waiting for the exam to start will take longer than the appointment itself. Physicians and nurses juggle massive case loads and may be rushed, despite their genuine desire to provide comprehensive care. To make the most of your appointment, be prepared to proactively bring up your questions, concerns and suggestions about your treatment and management plan. Make a list and go through it point by point.
Also, if someone is attending the appointment with you, make sure they know about your list so that they can interject reminders as needed. They can also help you by taking notes and being another set of ears to listen to the answers to the questions you ask.
2) Track and Share Your Disease Data
Increasingly, modern healthcare is shifting to a service model that prioritizes patient-centered care, which means that a patient’s specific health history, preferences and health goals are at the center of healthcare decision making.
In theory, that sounds great, but how can a person with arthritis do more than submit to lab tests, take medicines as prescribed and follow doctor’s advice?
Answer: They can bring their own, validated health data with them to doctors appointments. ArthritisPower™ is a newly launched (and free) mobile app developed to help arthritis patients track their symptoms, monitor their treatment and, then, share that information (via email) with their health care providers. Simultaneously, ArthritisPower is a resesearch registry that is part of the government funded Patient Centered Outcomes Research Institute (PCORI). ArthritisPower requires informed consent because arthritis patients donate their personal health data to research studies right from their phone.
That means that when you are sitting in the carpool line, watching TV, or even waiting for the gas tank to fill up, you can pull out your phone and enhance your personal understanding of your own arthritis while contributing to the arthritis research. Not only that, your doctor will better understand how your disease is progressing when you email the data in advance of your next appointment.
ArthritisPower is just one of over two dozen different research registries supported by PCORI.
3) Beware of “Dr. Google”
A recent study found that of the information offered on 85 gout-specific websites, more than 50 percent of the sites reviewed offered either no information or erroneous information. Further, 68 percent were labeled challenging to read or to understand .
That’s why it is important for people seeking treatment-specific information to use a critical eye when evaluating whether what they are reading is credible or potentially misleading. In general, information presented to patients by physician professional organizations (e.g., American College of Rheumatology), large medical systems (e.g. Mayo Clinic or Cleveland Clinic), patient-facing advocacy organiations (e.g. CreakyJoints) or government websites (e.g. the CDC) present a range of information on disease management without bias towards one treatment over the other.
4) Seek Support
The ability to binge watch TV series is only one of the major benefits of a sophisticated online society. Today, patients dealing with chronic diseases can find a support community from the comfort and privacy of their own home. Some communities narrowly focus on a specific diagnosis, while others are broader and speak to life with arthritis, generally.
Communities such as CreakyJoints, which I co-founded in 1999 from my dorm room when I was 18 years old and eager to connect with other people learning to living with a chronic disease, seek to bring out the positive aspects of living successfully with a chronic disease like RA and related conditions. There are also arthritis support groups that meet at hospitals and community centers across the country.
Armed with knowledge and a sense of purpose, people with arthritis can take the lead on making treatment and disease management decisions.
Jimenez-Linan, L. M., Edwards, L., Abiheshek, A., Doherty, M. (2016, July). Online patient information resources on gout provide inadequate information and minimal emphasis on potentially curative urate lowering treatment. Arthritis Care Res, doi: 10.1002/acr.22981