Many of us have been told, “Whatever you do, don’t look up your medical issues on the internet.” Of course, for better or worse, many of us have ignored this advice!
This was certainly the case after my son was diagnosed with celiac disease. Fortunately, my husband and I were able to find responsible websites, search engines, social media, and mobile apps that have become the key tools we depend on to maneuver through his disease on a daily basis. The internet, when used properly, is the perfect way to support patients and caregivers around the clock.
My son is under the care of a fabulous primary care physician and an equally fabulous team of specialists. They do a phenomenal job of educating us about the disease and monitoring my son’s progress. However, the reality is that none of us have 24-hour access to our doctors. This is where effective digital tools can be a game changer in supporting patients and caregivers.
After nearly 10 years in the pharmaceutical industry, I always joke, “I know just enough to be dangerous”. This experience has taught me that knowledge is power. When my son was diagnosed with celiac disease, I knew nothing about it. The first site I went to was “Dr. Google”. This was my start to discovering how the digital world would help keep my son healthy.
Now, many years later, not only have I become fairly savvy at navigating celiac-related medical sites, but I have been recruited to find helpful sites for friends dealing with other diseases such as cancer, diabetes, Alzheimer’s, and many autoimmune diseases. I have found that, regardless of the therapy area, there are numerous pharmaceutical companies, foundations, hospitals, and researchers supporting patients digitally. These digital tools offer 360-degree care for both patients and caregivers.
Lately, I have found that I am using various mobile and iPad apps more frequently. Based on my professional experience as well as my role as a hands-on caregiver, here are some strategies for navigating the rapidly changing online healthcare landscape:
1). Learn to Identify the Good, the Bad, and the Trusted
Trustworthy mobile sites are out there, but you need to identify them! Foundations, hospitals, and pharmaceutical companies’ websites are good starting places as sources of credible and regulated information about the disease you are researching. You may be surprised how much help and support are offered on these websites, and many of them have become mobile-optimized. On the other hand, as you start digging deeper on the web, you’ll start to recognize information that may not be as trustworthy. Like anything else, it takes time to recognize which sites to trust, and which sites to avoid.
2). Apperimentation Is Mandatory
“Apperimentation” is the act of downloading several apps and experimenting with which ones meet your needs. This “apperimental” approach is extremely valuable when it comes to healthcare apps. Once you have uncovered and tested apps that meet your specific needs, they can be incredibly useful tools for both caregivers and patients.
I started by simply going to Google and searching “apps for celiac disease”. You can take this approach with any disease. A simple trial and error approach works best. I test a wide range of apps, and after 2 or 3 weeks, if certain ones are not working for me, or if I’m not using them at all, I just delete them off my phone. By using this approach, I have curated a powerful set of useful apps that I can rely on again and again.
3). Social Solutions Are Essential
Social media can be another great digital tool to use, but like sites and apps, it can take some time to find your “social home”. Using social media can become a wonderful way to connect with other patients and caregivers experiencing many of the same concerns. It offers great solutions to shared struggles, and with mobile access, it is incredibly convenient to connect with others at the moment of need.
I’ve found it is best to start with a social media avenue you are already comfortable using. For me it was Facebook. I simply searched “celiac” in the search on Facebook and found numerous groups to “like” and follow. Over time, some of the groups rose to the top of my active list. The same approach can be used on other social media platforms, such as Pinterest and Twitter.
Caring for my son has made me acutely aware of how the digital world is helping us and our loved ones stay healthier. While there is no perfect source for online caregiver information, it’s possible, with some effort and “apperimentation,” to find the information you need, and have it available 24/7, right at your fingertips!