Lupus and Telemedicine
Today, millions are receiving at least some of their healthcare virtually – through online medical visits. Read about this rapidly evolving practice, and how it can support healthcare for individuals with lupus.
Telemedicine goes by other names, such as “ehealth” and “telehealth.” It has evolved from being simple phone appointments, to fully interactive, virtual meeting spaces using dedicated applications such as Zoom, Facetime and Skype. Telemedicine also involves the many smartphone and computer applications now available for download that track medications, symptoms and other healthcare records. Many of these apps may already be used by individuals with SLE to monitor and manage their health between in-person visits. Cumulatively, all of these tools can record and track our health, making that information easy to retrieve and accessible from almost anywhere.
According to the American Association of Retired Persons (AARP), as of the writing of this article, approximately 95% of healthcare visits are now virtual. If you have not had a virtual visit, chances are that you will in the future as technology improves and expands. If you have seen your practitioner virtually, you may still have many questions about how secure your personal health information is and how you can make the most of these appointments. You may also be wondering when it is appropriate to be seen in the office as opposed to over the Internet. In this blog, we hope to take some of the ambiguity and mystery out of telemedicine and make the experience as comfortable and effective as possible.
Telemedicine Versus In-Office Visits for Chronic Illness
Telemedicine can provide an efficient and effective way to manage chronic conditions such as lupus. An individual canbe seen more often virtually than by in-person appointments, and, therefore, both the individual and practitioner are able to stay on top of, or even ahead of, any symptoms and changes in health.
While there is no substitute for an in-person visit, virtual ones may be safer for an individual’s overall health. If she or he is experiencing non-life threatening symptoms, and is immunocompromised, it may not be safe sitting in a crowded waiting room. Having the option to talk with a practitioner over the Internet can provide a sense of security and ease stress.
During the 2020 COVID-19 pandemic, Italian doctors evaluated the usefulness of telemedicine for individuals with SLE. The doctors offered routine medical appointments via telemedicine for 65 individuals with SLE to ensure they still received proper and regular care during the crisis. The doctors feared that these individuals might be reluctant to enter medical facilities if experiencing COVID symptoms and so, implemented COVID symptom analyses during these virtual visits. 12 individuals in the cohort did develop COVID, but the symptoms were mild and were able to be monitored by the doctors. These individuals may not have otherwise sought medical care for their COVID symptoms or even their SLE. This project proved the value of telemedicine as a viable option for the management of chronic illnesses such as SLE as well as other conditions.
There are some symptoms, however, that warrant an in-office visit. It always makes sense to call before making an appointment so you can chat with someone in the office to find out if you need to be seen in-person or not. You can always try reaching out to your practitioner through your patient portal prior to scheduling a visit to find out what is appropriate based on symptoms.
Telemedicine visits are typically appropriate for:
- routine and/or follow-up visits;
- discussing changes in medications;
- some mental health visits;
- minor injuries such as bruises or strains;
- sore throats;
- the common cold;
- seasonal allergies;
- mild flu symptoms;
- mild aches and pains;
- mild fever; and
- other conditions and/or symptoms that you have previously discussed with your healthcare practitioner that do not require an in-patient visit.
Of course, any severe or sudden on-set illness or injury that would require urgent or emergency care should be done in-person. Call a healthcare practitioner or dial 911 immediately.
There may also be some needs that can be taken care of over the phone or through email. Medication renewals and refills, doctor’s notes for work or school or other necessary paperwork may not require an office or virtual visit.
The Pros and Cons of Telemedicine
As with most technologies, there is an upside and a downside to telemedicine. Here are some things to take into consideration when trying to decide if telemedicine is right for you:
- Care to under-serviced areas: Individuals who live in rural areas may be able to access more routine, quality care more easily via telemedicine.
- Convenience: Being able to visit with a doctor on a lunch hour at work, from home or basically anywhere there is broadband internet service saves time, money and energy. An individual may not have to use sick hours at work to see their doctor or find childcare while they attend an appointment.
- Safety: Individuals with chronic illnesses such as lupus may feel safer visiting their practitioner virtually instead of travelling to the practitioner’s office and being surrounded by others who may be very sick.
- Customized care: Through the different facets of telemedicine (mobile apps, patient portals, etc.), a practitioner can work with an individual to customize the tools needed that are specifically targeted to their healthcare management needs and concerns.
- Overall improvement of health: If an individual can meet with their practitioner virtually, at least for some appointments, there may be an incentive to play a more active role in their own healthcare. An individual may be more willing to acknowledge symptoms and ask for help if they can initially be seen virtually.
- Outdated or limited technology: A 2018 survey found that 23% of individuals did not have the technology to support telemedicine, and 35% percent of medical practices did not have the proper technology in place to offer virtual care to individuals. This technological divide is one that is hopefully rapidly changing!
- Disparities in coverage and allowable expenses: The cost of telemedicine depends upon where you live. Countries such as Canada and the United Kingdom with single-payer health insurance or large organizations that are self-insured have quickly adopted telemedicine in order to cut costs and potentially improve health. However, in the United States as of 2016, only 29 states had adopted laws that required private insurers to cover telemedicine costs at the same rate as in-office visits and 48 states’ Medicaid programs covered telemedicine costs with restrictions. As of the COVID-19 pandemic in 2020, all Medicaid and Medicare programs have lifted restrictions and are covering telemedicine costs. However, this may be temporary.
- Socio-economic and geographical barriers: According to the Federal Communications Commission (FCC), 19 million Americans (6% of the population that live in rural areas) still do not have access to even basic broadband service. 100 million Americans that do have access do not subscribe to service, and in tribal areas, approximately 30% of individuals do not have access. These individuals are not necessarily receiving the same level of care available to individuals living closer to urban areas and who also experience more economic stability.
- Skill: Many individuals lack the skill and do not feel comfortable using their computers or smartphones for virtual healthcare. If they are not living with someone or do not have someone nearby who can help them navigate a virtual meeting platform, they may put off healthcare appointments and suffer needlessly.
- Quality of physical examination: Nothing can substitute for an in-person physical examination when physical touch is necessary for diagnosis and treatment. There is obviously a limit as to what a medical practitioner can observe from a computer screen.
- Lack of standardized regulations on mobile apps: Many of the free healthcare apps that we use on our smartphones provide third-party access to our personal information and are not held to strict and uniform regulations that insurance carriers are.
Telemedicine and HIPAA
As we all know, online security and personal information are increasingly important issues. In the United States, the Health Insurance Portability & Accountability Act (HIPAA) covers telemedicine. HIPAA protects all health information including electronic information and keeps it confidential. If a healthcare practitioner wants to comply with HIPAA, they must follow standard guidelines that are included in the act. According to HIPAA:
- Only authorized users should have access to electronic protected health information (ePHI).
- A system of secure communication should be implemented to protect the integrity of ePHI.
- A system of monitoring communications containing ePHI should be implemented to prevent accidental or malicious breaches.
If you have questions or concerns about the safety of your information via telemedicine, speak to someone in your practitioner’s office prior to setting up your virtual appointment and ask how they will be protecting your health data.
How to Prepare for a Virtual Visit
The first thing to do is to see if your practitioner offers virtual appointments. If she or he does not, and this feature is important to you, it may be time to find a new practitioner who has the ability to engage with individuals via telemedicine. You will also want to make sure your insurance covers telemedicine visits. It might also be a good idea to ask if you can have someone with you during your appointment – both as support or even as a note taker.
It is also important to make sure your personal technology – computer, tablet or smartphone – is up-to-date and working properly. When making your appointment, ask what the minimum technology requirements are. Keep your operating systems on your laptop and smartphone current, and make sure both are capable of running the platform your healthcare practitioner uses for telemedicine visits.
Before your appointment, you will want to prepare your technology:
- Fully charge your device.
- Keep your power supply close, just in case.
- Test your device by making sure the camera, speakers and microphone work.
- Test the application prior to the appointment. If you are not used to meeting virtually and will be using an application such as Zoom, FaceTime or Skype, ask a friend to practice with you to make sure you know the basic functions of the application.
- Make sure you have a stable internet/WiFi connection.
Other considerations to make prior to your virtual appointment include:
- Select a private location: Select a place to sit for your appointment that has good lighting, is quiet without a lot of environmental noise, is private and is in an area where there is a strong broadband connection.
- Keep lists: Keep lists of all your symptoms and anything else you may be experiencing. This will help you and your healthcare practitioner keep on-task during a virtual visit, especially when it is a relatively new experience for the both of you.
- Prioritize your symptoms/concerns: Sit down and think about what you have been experiencing, what is of most concern to you and prioritize your list.
- Keep prescriptions handy: Either grab your prescription bottles or write them in a list in order to have them handy during your visit.
- Take your vital statistics: If you can, check your temperature, weight, blood pressure, pulse and blood sugar (if necessary) right before your appointment. Have the readings handy for the visit.
- Grab a flashlight: A flashlight may come in handy if you are having issues with your mouth, throat or skin. A flashlight can focus extra light on the affected area and may help your healthcare practitioner with their diagnosis.
- Take photos: Take photos of any physical symptoms such as rashes, etc. to send to your healthcare practitioner prior to your visit. Also, you may be able to “screen share” a photo during your virtual visit.
- Start early: Log into the virtual appointment at least 10-15 prior to the appointment time, if possible. Keep your phone handy in case someone from the practitioner’s office needs to get a hold of you.
- Have a pen and paper handy: As an extra precaution, have these not only to write notes for yourself, but be prepared to write a note to the practitioner to hold up in front of the camera in case your speakers or microphone fails.
What to Expect During a Virtual Visit
Since this technology is new to so many, it is important to have plenty of patience during your virtual visit. You may feel a little awkward and your practitioner may feel that way as well. Weaker broadband connections can also cause a delay in transmission and things may seem “off” which can make conversation difficult.
Sometimes, the practitioner’s assistant will call prior to the virtual visit to record your vital stats. It is important to have them ready and let the assistant know if you are not equipped to take these readings. The assistant may also ask other questions about your symptoms, etc., just like during an in-office visit before the practitioner enters.
This is also a good time to ask the assistant what happens if the appointment is disrupted due to a technology failure. Ask if you can complete the appointment via phone or if you will need to reschedule.
Once your practitioner logs on, the appointment should flow similar to an in-office visit. She or he will go over your vital stats, your current health status, your medications and your symptoms and concerns. The practitioner will physically assess you to the best of their ability and may ask you to breathe closely to the microphone to check your breathing or lean closer towards the camera to check on a physical symptoms such as a rash, etc. This is when the flashlight may come in handy!
Depending on your symptoms and reason for the visit, your practitioner may ask you to recheck your vitals so it is a good idea to keep your equipment close during the visit. If you are experiencing pain, the healthcare practitioner may ask you to perform a self-check such as touching the pressure point, etc., in order to better diagnose symptoms.
Listen to any recommendations your practitioner may make after they have assessed your health. You may need follow-up lab work or testing prior to your next visit. It is a good idea to take notes yourself, or having someone with you to take them. Also ask your practitioner to send you an “after appointment summary” of everything that was discussed.
You can also help out the practitioner by offering to send them a copy of your notes, vital readings, etc. They can add these notes to your file and read them so they can make sure they have captured your information correctly.
The Future of Telemedicine
It is hard to predict how telemedicine will look in the future, but experts believe it will continue to expand, and Individuals, who were skeptics at first, have increasingly embraced it as a viable option for receiving treatment. Telemedicine is increasingly used as a valuable tool for those who have faced obstacles to receiving routine care in the past. Practitioners are better able to serve individuals not only through virtual visits, but through email and patient portals as well. The adoption of telemedicine in Europe, however, has been met with more resistance than in the U.S. due to the strict regulations of the European Union. Only time will tell if this cultural shift in the approach to healthcare will become the norm globally.
Having a broader understanding of telemedicine and how an individual can make it work for their unique needs can provide greater confidence in the technology itself. Understanding the challenges that both an individual and a practitioner face in their approach to telemedicine can help both build a stronger relationship utilizing the tools available for each unique situation. In the long-term, telemedicine may help breach the divide between basic healthcare and more inclusive and holistic health management.
Abrams, K., Burrill, S., & Elsner, N. (2018, July 18). What can health systems do to encourage physicians to embrace virtual care? Deloitte Insights. Retrieved June 27, 2020 from https://www2.deloitte.com/us/en/insights/industry/health-care/virtual-health-care-health-consumer-and-physician-surveys.html
Cassione, E., Zanframundo, G., Biglia, A., Cudullo, V., Montecucco, G., & Cavagna, L. (2020). COVID-19 infection in a northern-Italian cohort of systemic lupus erythematosus assessed by telemedicine. Annals of the Rheumatic Diseases. doi: 10.1136/annrheumdis-2020-217717. Retrieved June 27, 2020 from https://ard.bmj.com/content/annrheumdis/early/2020/05/23/annrheumdis-2020-217717.full.pdf
Dorsey, E. & Topol, E. (2016). State of telehealth. The New England Journal of Medicine, 154-161. Doi: 10.1056/NEJmra1601705. Retrieved June 27, 2020 from https://www.lesdebatspublicsdelipc.com/wp-content/uploads/2016/07/state-ot-telehealth-nejm.pdf
Eight broadband progress report. (n.d.). Federal Communications Commission. Retrieved June 27, 2020 from https://www.fcc.gov/reports-research/reports/broadband-progress-reports/eighth-broadband-progress-report
El-Miedany, Y. (2017). Telehealth and telemedicine: How the digital era is changing standard health care. Smart Homecare Technology and TeleHealth, 42-51. Retrieved June 27, 2020 from https://calio.org/wp-content/uploads/2020/03/Telehealth-and-telemedicine-how-the-digital-era-is-changing-standard-health-care.pdf
Frank, G. (2020, April 27). Surge in telemedicine one ‘good’ outcome from COVID-19 crisis, doctors say. Fibromyalgia Today. Retrieved June 27, 2020 from
Gordon, M. (2020, April 15). Telehealth tips: How to make the most of video visits with your doctor. National Public Radio. Retrieved June 27, 2020 from https://www.npr.org/sections/health-shots/2020/04/15/828084250/how-to-get-the-most-out-of-your-virtual-medical-appointment
Health Insurance Portability & Accountability Act. (2019). California Department of Healthcare Services. Retrieved June 27, 2020 from https://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx
Lenzer, J. (2020). The future of health care is here. AARP Bulletin.
Lewtas, J. (2001). Telemedicine in rheumatology. The Journal of Rheumatology, 28(8), 1745-1746. Retrieved June 27, 2020 from http://www.jrheum.org/content/28/8/1745.short
What is HIPPA? (n.d.). American Academy of Allergy Asthma & Immunology. Retrieved June 27, 2020 from https://www.aaaai.org/practice-resources/running-your-practice/practice-management-resources/Telemedicine/HIPAA#:~:text=HIPAA%20Compliance%20in%20Telemedicine&text=The%20HIPAA%20guidelines%20on%20telemedicine%20are%20contained%20within%20the%20HIPAA,should%20have%20access%20to%20ePHI.&text=A%20system%20of%20monitoring%20communications,prevent%20accidental%20or%20malicious%20breaches.
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.
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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.