It’s been over ten years since my life changed forever. In 2012, I was out to dinner with a friend when I developed a rash across my face. Little did I know, this was an early sign of what would soon be a life-altering discovery; I have lupus. Receiving this diagnosis was both challenging and overwhelming and showed me the importance of being your own advocate. It took a fainting spell at work and a trip to the emergency room for doctors to finally take my symptoms seriously, and after blood tests and a biopsy, my nephrologist officially diagnosed me with the autoimmune disease lupus. When I was first diagnosed, my initial thought to myself was, “Am I going to live?” I was desperate to meet someone who understood what I was going through. I wanted to find someone else with lupus so they could tell me they also went through this journey and everything was going to be OK.
Fast forward to when I first discovered online patient communities. I was browsing social media and stumbled across an advertisement for a patient platform, which sounded exactly what I was looking for — patients like myself navigating lupus. This site became my first support group, and as a young black mom, it was my first place to connect with other lupus patients. Finally, I felt like I had found a space where I could ask questions without judgment at my convenience and share experiences with others without feeling like I was complaining when I needed support from people who understand most. Having this resource was critical for managing and navigating my health journey, and it’s concerning that despite today’s technological advances, many people are unable to benefit from these resources because they either don’t have access to at-home internet or they don’t have the necessary skills to properly navigate digital tools.
Chronic disease impacts nearly 1 in 2 U.S. adults, and as in-patient volume continues to overwhelm providers, digital tools (telehealth, online communities) have increased in popularity, but many people are being left behind. Improving the digital divide isn’t a novel concept, but with studies indicating people with lower socio-economic status are at higher risk of developing chronic conditions and many of these households not having at-home internet access, it’s important that we bridge this gap and improve digital health literacy, so all people with chronic conditions can benefit from online resources in the same ways I have.
Lupus is so complex and individualized that it may be tempting to focus on symptoms and medications rather than focus on the bigger picture – living through it. After going through chemotherapy and losing my hair, I decided I didn’t want other women with lupus to feel they had to go through this process alone. There’s tremendous power in the patient-doctor relationship, but it can only be harnessed if each side truly sees and listens to the other, which is why I became a patient advocate. Now in remission, I’ve dedicated my time to supporting other women dealing with this disease and helping them recognize the signs to seek an early diagnosis, which can be the difference between life and death for many.
More health care providers are leaning on patient engagement technologies to support self-management and better outcomes. But as the industry becomes more high-tech, digital health literacy becomes a greater threat to health equity. For those living with chronic conditions, not having access to these services could be detrimental to how they manage their disease and their overall quality of life. As someone with a chronic illness, you need to be your own advocate.
Having high digital health literacy is an important aspect of navigating chronic illness. Digital health literacy means you not only have access to digital health tools, but you also are able to make sense of the information you receive from them. Language also plays an important role because if the information isn’t in the patient’s native or preferred language, the resource isn’t beneficial to them. We’ve seen how digital tools such as patient portals, health trackers, and remote monitoring devices can benefit health care outcomes, foster greater patient engagement, and provide better support outside the doctor’s office. But what about those who don’t have the opportunity or even the capacity to make use of these tools?
In an increasingly digital industry, ensuring patients have the skills to use technology will be critical to providing quality health care. In August of 2021, Accenture reported that nearly half of the patients surveyed were using virtual care for their provider visits, about a third of patients were accessing their EHRs from home, and the number of patients using remote patient monitoring nearly tripled since pre-pandemic figures. As more health care providers lean on patient engagement technologies, they need to also consider strategies to help improve digital health literacy. Despite its benefits, online platforms like PLM are only accessible if you have access to the internet and the knowledge necessary to use and understand digital resources. Digital health literacy will be essential as health care increasingly embraces technology. Although some patients may still choose to use low-tech patient engagement strategies—it could simply be their preference — health care providers should implement a digital health literacy plan to make sure health IT is an option for everyone.
Alyshia Merchant is a patient advocate.