MyLupusTeam wanted to understand what members thought about telehealth. Prior to the pandemic, conventional wisdom was that telehealth might provide a backup for quick, convenient care for basic health needs — such as a cold, fever, or prescription refill — but that it played no role in chronic disease management. However, this year MyLupusTeam members have demonstrated how adaptable they are to different ways of being seen by a doctor.

We surveyed 502 members of MyLupusTeam in the United States during summer 2020 about their experiences with and perceptions of telehealth — both before and after the COVID-19 pandemic began.

• People who have tried telehealth feel comfortable with it and will use it again.
• More people see telehealth as safe, more convenient, and easier to use than in-person appointments.
• People are using telehealth for ongoing care and monitoring of existing health concerns.

People Who Have Tried Telehealth Like It

What does it mean that people who have tried it like it? Well, three-quarters of survey respondents who have had a telehealth appointment since the pandemic began said they are comfortable with it. In addition, 61 percent said they are likely to use telehealth in the future (compared to 35 percent of those who never tried it).

People tend to feel skeptical about using telehealth until they have tried it. Once they have, they are more likely to see its advantages. Among the MyLupusTeam survey respondents who have tried telehealth:

• 70 percent believe it is safer than in-person appointments (compared to 43 percent of respondents who have not yet tried telehealth).
• 68 percent believe it is more convenient than in-person appointments (compared to 40 percent).
• 65 percent believe it is easier than in-person appointments (compared to 37 percent).

Those who haven’t tried telehealth generally are not as enthusiastic about it as those who have tried it. However, this group still recognizes some advantages to telehealth. Even without personal experience, they are more likely to consider telehealth safer, better for routine matters, more convenient, and easier than in-person appointments.

In-Person Visits Still Needed for Thorough Exams

Of course, in-person appointments have some clear advantages. MyLupusTeam members believe in-person appointments are better than telehealth appointments for comprehensive exams. The vast majority think in-person appointments provide a more thorough examination. Additionally, many also think that in-person appointments are more personal.

Telehealth Works for Both Primary Care and Specialist Appointments

MyLupusTeam members largely reported using online appointments to see doctors they already knew. Their telehealth appointments were with specialists (50 percent), primary care physicians (18 percent), and both specialists and primary care doctors (33 percent).

Why did respondents schedule these appointments? The top reasons for primary care appointments were ongoing care and monitoring of an existing condition or illness (65 percent) and filling or refilling prescriptions (46 percent). The top reason for specialist appointments was ongoing care and monitoring of an existing condition or illness (84 percent).

Almost three-quarters reported feeling satisfied with the appointments — 74 percent were satisfied with their virtual specialist appointment and 73 percent were satisfied with their virtual primary care appointment.

Not only did MyLupusTeam members try telehealth appointments to see their providers, but they also tried multiple times. Two-thirds of respondents said they had two or more appointments via telehealth. Members took telehealth in stride and integrated these appointments into their daily lives. Three-quarters had appointments over mobile phones.

One member of MyLupusTeam urged another to consider the risk of in-person appointments, writing, “During these times, a telehealth phone call is better than risking exposure with your preexisting condition.”

Telehealth can play an important role in getting necessary health information. One member asked the MyLupusTeam community for help: “I have a telemedicine appointment tomorrow with a rheumatologist and was just wondering if you all have any suggestions on what to ask and discuss. I've heard that lupus is very hard to diagnose, so I want to make sure I make the most of my visit.” Another wrote that she was so happy to hear back from her doctor to receive her lupus diagnosis over a telehealth appointment.

As always, we’re sharing the findings of our research with the MyLupusTeam community. You can see highlights of the survey results in the slides below. Have you tried online doctor visits? How was your telehealth experience? Leave a comment below or start a conversation on MyLupusTeam.