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Lupus and Mobile Tech – Smartphone Apps and Managing Your Health

According to recent estimates, there are over 300,000 mobile health apps available to the consumer.  What should you consider before downloading an app, and which ones could help you the most with tracking and managing your healthcare? Let’s take a look!

Introduction

With a world that seems to move faster and faster all the time, it is not surprising that we have become increasingly dependent on our mobile devices to simplify and streamline our lives. We find ourselves repeatedly reaching for our phone throughout the day to check the traffic, order groceries, scan social media or even do something old fashioned, like read a book. So much of what we do for both work and play is conveniently with us all day long.  As smartphone apps themselves have grown in sophistication from games and music to virtual wallets and movie editing, app developers have created various healthcare tools to assist us in leading healthier lives … on the go.  

Mobile health, or “mHealth,” has become a general term for the technology involving mobile phones and wireless access to medical care information and services.  It is a growing field that has the potential to give individuals far greater convenience, personalization and control over their own healthcare than in the past.  It also has the potential to crowd source data to make the identification and tracking of diseases and epidemic outbreaks far more quickly than would have seemed possible only a few years ago.  In 2018, a consumer survey by Deloitte found that 35% of respondents were interested in virtual assistants to help identify symptoms and direct them to a healthcare provider, and 60% were willing to use a wearable device to share personal health data with their doctor.  The numbers are higher with younger consumers and those with chronic conditions. 

Mobile health has a tremendous potential for managing chronic disease – especially those, like lupus, where symptoms can change so dramatically from day-to-day and person-to-person.  The easier it is to capture those symptoms and changes in real-time and get the information to a healthcare provider, the better the disease can be managed. 

A 2016 study by Italian researchers (Cannizzo and others) noted that the use of mobile healthcare technology in the treatment of lupus may not only help you gain better control over your symptoms, but can also help improve communications with your healthcare team, improving overall patient care in the long term.  They suggest that the continued development and use of these mobile health technologies could “represent a bridge linking the patients to the physician, providing the latter with a more realistic snapshot of the patient’s health status.”

What exactly are the latest healthcare apps, and how can they work to help you stay organized, manage your overall health and communicate effectively with your healthcare team about your personal experience as an individual living with chronic illness?

The Latest Mobile Health Apps for Individuals with Lupus

Please note that the use of mobile health apps is not intended to replace routine visits with your healthcare practitioner. Mobile health apps are designed to augment your treatment plan, providing tracking and record-keeping tools to keep information about your symptoms and healthcare conveniently at your fingertips in today’s highly digitized world. 

This list is not exhaustive, but it includes many of the most popular apps and should be a good place to start.  Also, the app marketplace changes rapidly, so some of the information below is always subject to change.

  • MyTherapy – Free, iOS and Android. MyTherapy does not focus on lupus, but tracks your medications and usage, symptoms and even lab results and gives you friendly reminders.
  • Lupus Minder – Free, iOS and Android. This app works similarly to the MyTherapy app, but also allows you to track your appointments, review your health history, and even take and download photos of any physical lupus symptoms you may be experiencing.
  • Lupie Diary – Free, iOS and Android. This international app created for non-US individuals provides the means to track everything from your symptoms and medications to your healthcare appointments and practitioner contact information.
  • My Lupus Log – Free, iOS and Android. This app was developed by GalaxoSmithKline and allows you to track and monitor symptoms in a clear and colorful way, chart them over time, write journal entries, and it has a useful dictionary of medical terms.
  • Flaredown – Free, iOS and Android. Flaredown provides a place to log your symptoms and medications, eventually identifying patterns that may indicate flares or medication side effects.
  • Medisafe – Free, iOS and Android. The Medisafe app helps you track all of your medications, dosages and the frequency at which they should be taken.
  • ZocDoc – Free, iOS and Android. If you’ve been recently diagnosed with lupus or any overlap disease and need to find specialists in your area, ZocDoc not only helps you find practitioners who accept your insurance, but checks their availability as well.
  • EPA’s SunWise UV Index App – Free, iOS and Android. Updated hourly, this app enables you to track when the UV index is at its peak, which is imperative if you experience photosensitivity or other lupus skin
  • Mango – Free, iOS and Android. Mango helps you stay on track with taking your medications and even rewards your success with points that you can turn into donations towards favorite charities or even Target gift cards.
  • Imageinbox – Free, iOS and Android. Imageinbox allows you to store images from x-rays, MRIs, ultrasounds and CT scans all in one convenient place without having to bring CDs, thumb drives or the images themselves with you to appointments.
  • Fooducate – Free, iOS and Android. This app tracks your diet and weight so you can make healthier food choices and manage your lupus symptoms. You can also use it in tandem with fitness apps in order to track exercise and calories in order to gain control of your diet and fitness goals.
  • Sleep Cycle – Free, iOS and Android. Sleep Cycle helps you make the most of your sleep by tracking the quantity and quality of the rest you are getting.
  • Headspace – Free, iOS and Android. Your mental health is just as important as your physical health. Headspace can help get you started with meditation and mindfulness, providing the basics to help you build healthy relaxation habits. Similar free apps include Calm, and Insight Timer. Many of these apps allow you to upgrade for a fee, but the free features are typically pretty robust.
  • My Pain Diary – $4.99, iOS and Android. Not only does My Pain Diary provide tracking tools for identifying patterns in your health and managing symptoms, but it can also connect you with other individuals experiencing similar symptoms in order to give each other support and swap best practices.
  • My Medical Info – $4.99, iOS and Android. This handy app not only stores information about your medical history, healthcare appointments, and medication usage, but your insurance information as well making it a convenient tool to take with you the next time you meet with a healthcare practitioner or pharmacist. 

Chances are, your healthcare practitioners and research teams are also using apps to help them stay abreast of the latest information and trends in medical research. C. Lee Ventola, MS writes that healthcare apps provide benefits to healthcare practitioners by providing “convenience…better decision-making…improved accuracy…increased efficiency…[and] enhanced productivity.”  While some of these apps are very clinical and specifically targeted for professional use, a couple of the apps offer features that may be of interest to you as someone experiencing lupus who is keenly interested in learning more about chronic disease:

  • Medscape – Free, iOS and Android. Medscape offers news reports and articles, information about medications, access to medical journals and even directories of healthcare practitioners and pharmacies.
  • Case – $4.99, iOS and Android. Case can connect you to the latest in research and studies, PubMed abstracts, videos and even provides a language translator.

There is also a growing number of apps that are developed and used by specific research teams to capture specific information regarding their studies and therapy trials.  If you become a participant in such a study, you may end up using an app to track your symptoms, doses and to journal your observations and experiences.

The Pros and Cons of Mobile Health

Before you decide as to whether or not download any healthcare apps, consider speaking to your healthcare provider about which ones may work best for both of you in order to track and manage symptoms and communicate information. It is also important to consider the pros and cons of this technology when making your decision:

Pros:

  • Convenience – Having your healthcare information in the palm of your hand can provide real-time information.
  • Encourages Healthy Behavior – Logging and tracking information such as what you are eating or how you are exercising requires you to not only be mindful of your actions, but to reflect on them as well in order to make better decisions.
  • Education – Several apps mentioned earlier in this article can give you tools to research and investigate, making you more familiar with the disease itself, current treatment trends, and lupus in the news.
  • Treatment Compliance – If you have your plan in front of you at all times, you will know exactly what to do and what not to do in order to avoid flares and stay healthy.
  • Improved Monitoring – Tools that are easy to use will simplify recordkeeping and tracking, making you more likely to monitor how you are feeling, etc.
  • It’s Paperless – Trying to do your part and conserve? There may be no better way than keeping track of all of your healthcare information than through apps.

Cons:

  • Data Privacy – Just like anything you do online, your data may be tracked and even sold to advertisers. Just like your computer, your phone can also be hacked and your personal information compromised.
  • Inaccurate Information – If you use apps to measure blood pressure, heart rate or even count steps, they may inaccurately calculate this information, skewing your actual data.
  • Lack of Regulation and Approval – As of 2017, out of approximately 325,000 health apps, the FDA had only approved a fraction of them. Approving healthcare apps is not a top priority for the FDA.
  • Too Much Reliance – Some individuals rely on these apps so much that they stop regularly visiting their healthcare practitioner. They mistakenly feel that they can manage everything on their own.  This can have dire consequences.  Consider these apps as just helpful tools that can assist you with any wellness plan that you already have with your healthcare provider.

In Conclusion

Today’s technology provides us with a robust lineup of tools to use in order to organize and manage our healthcare from phone numbers and insurance information to food diaries and symptom tracking. While the choices may seem overwhelming, your needs may be as individual to you as how you experience lupus.  Some of us are more technically inclined than others and that’s perfectly fine. Do what is comfortable and what works best with the least amount of stress in order to focus your time and energy on what is most important to you.

 

References

Betts, D. & Korenda, L. (2018). Inside the patient journey: Three key touch points for consumer engagement strategies.  Retrieved from https://www2.deloitte.com/insights/us/en/industry/health-care/patient-engagement-health-care-consumer-survey.html?id=us:2el:3pr:4di4632:5awa:6di:092418:&pkid=1005423
Cannizzo, S., Lorenzoni, V., Mosca, M., Tani, C., Trieste, L., & Turchetti, G. (2016). Health information technologies in systemic lupus erythematosus: Focus on patient assessment. Retrieved from https://www.clinexprheumatol.org/article.asp?a=11147
Collier, J. (2018). mHealth: What is it, and how can it help us? Retrieved from https://www.medicalnewstoday.com/articles/322865.php
Haelle, T. (2018). A look at a new type of medical research app. Retrieved from https://healthjournalism.org/blog/2018/09/a-look-at-a-new-type-of-medical-research-app/
Henderson, W. (2017). 6 of the best apps for chronic illness management. Retrieved from https://lupusnewstoday.com/2017/07/17/6-best-apps-chronic-illness-management/
Holman, T. (2016). The pros and cons of mobile health apps. Retrieved from https://www.dignityhealth.org/articles/the-pros-and-cons-of-mobile-health-apps
Howard, P. (2017). New smartphone app for people with lupus. Retrieved from https://www.lupusuk.org.uk/lupus-smartphone-app/
Life with lupus: Manage your condition, avoid flare-ups, control symptoms, and adhere to your medication with MyTherapy. (n.d.). Retrieved from https://www.mytherapyapp.com/lupus-sle-app-for-easing-treatment
New app helps patients fill key gap in lupus treatment. (2017). Retrieved from https://www.prnewswire.com/news-releases/new-app-helps-patients-fill-key-gap-in-lupus-treatment-300535664.html
Pohl, M. (2017). 325,000 mobile health apps available in 2017 – Android now the leading mHealth platform.  Retrieved from https://research2guidance.com/325000-mobile-health-apps-available-in-2017/
The 23 best medical apps for doctors. (2015). Retrieved from https://www.gallaghermalpractice.com/blog/post/the-23-best-medical-apps-for-doctors
Ventola, C.L. (2014). Mobile devices and apps for health care professionals: Uses and benefits. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4029126/pdf/ptj3905356.pdf
Zeppieri, M. (2018). 3 apps I’m using right now for lupus. Retrieved from https://lupusnewstoday.com/2018/02/27/lupus-management-helped-these-3-mobile-apps/

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. 

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.