American College of Rheumatology Annual Meeting

American College of Rheumatology Annual Meeting

Source:

Bolek-Berquist J, Grainger R. 3S009: Help Patients Navigate Online Support & Social Media. Presented at: ACR Convergence 2020; November 5-9, 2020 (virtual meeting).

Disclosures: Bolek-Berquist reports no relevant financial disclosures. Grainger reports receiving consulting fees from Novartis, speaker/honoraria from Abbvie, Cornerstones and Janssen and other support from Pfizer.
November 10, 2020
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Advice, support draw patients to 'peer-to-peer health care' in social media

Source:

Bolek-Berquist J, Grainger R. 3S009: Help Patients Navigate Online Support & Social Media. Presented at: ACR Convergence 2020; November 5-9, 2020 (virtual meeting).

Disclosures: Bolek-Berquist reports no relevant financial disclosures. Grainger reports receiving consulting fees from Novartis, speaker/honoraria from Abbvie, Cornerstones and Janssen and other support from Pfizer.
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Rheumatologists should confront the reality that an increasing number of patients are using social media to find information on their disease and connect with other patients, according to two speakers at ACR 2020.

Rebecca Grainger, PhD, FRACP, MBChB, associate professor in the department of medicine at the University of Otago in New Zealand, outlined how to find and appraise apps and websites that patients may be accessing for information about their disease. She said there are four main reasons driving online activities of patients with rheumatic diseases.

Patients use everything from “YouTube to podcasts to look for information about their diseases,” Jilaine Bolek Berquist, MD, told attendees. Source: Adobe Stock.

The first is for clinical information about everything from potential disease prognosis to how to interpret lab results. The second is for support from other patients, while the third is to find advocacy opportunities. The fourth is for patients looking for methods of self-management or other forms of non-clinical, emotional support.

While Grainger acknowledged that finding accurate and useful clinical information online can be daunting, she said there are a small number of peer-reviewed articles and app clearinghouses available that sort the wheat from the chaff. “Think of these as like systematic literature reviews, except for apps,” she said.

Rebecca Grainger

Many patients simply search the app store on their device to find information, but Grainger warned that different search results can be found from day to day, information can be country-specific, of variable quality and “less comprehensive than might be hoped.”

Understanding what patients want from online information is critical to helping them make good decisions and meet their needs, according to Grainger. Data have shown that they want to track their medication intake, set up prompts and reminders for doses and visits and record lab results. Ease of use is important, as are links to more information.

As for drawbacks of online technology in the rheum space, privacy is a concern. “An error in the app could cause harm,” Grainger added. “The more complex and the more functions of the app, the greater the risk for harm.”

Despite these concerns, Grainger urged clinicians to familiarize themselves with the apps and websites being accessed by their patients and make recommendations accordingly. “Use the available literature and go to trusted organizations,” she said.

Jilaine Bolek Berquist, MD, of SSM Health Dean Medical Group in Wisconsin, acknowledged that understanding of social media use in rheumatology is “in its infancy.” That said, she believes it can help clinicians guide their patients, or help clinicians help patients guide themselves, as the case may be.

Patients use everything from “YouTube to podcasts to look for information about their diseases,” Bolek-Berquist said.

But beyond information, patients are looking for support. Bolek-Berquist highlighted the Live Yes platform as a place where patients with accounts can post or answer questions and engage in what she called “peer-to-peer health care.”

“People can be geographically separate and come together,” she said.

What clinicians have come to understand is that online support groups have led to patient-powered networks that drive research agendas toward things that are important to patients. “That is a great thing for us and our field,” Bolek-Berquist said.

Rheumatologists should be familiar with the types of online groups patients are visiting, from open forums that are large and information-centric, to smaller groups that are more about making individual connections.

Bolek-Berquist warned that patients may be vulnerable to false information, dubious sales schemes or groups promoting unhealthy behaviors. Rheumatologists should familiarize themselves with these pitfalls to better guide patients.

But rheumatologists should also recognize the positives of the online patient communities. “The features of an ideal support group are those that are patient-centered, powered and moderated, preferably by someone with advocacy experience,” Bolek-Berquist said.

Patients are encouraged to visit groups that are moderated, and, ideally, part of reputable organizations like the Arthritis Foundation or major hospitals or universities.

Moving forward, Bolek-Berquist encouraged the broader rheumatology leadership community to accept that patients will be engaging in all types of activities online pertaining to their disease, and to stay abreast of these developments whenever possible.

“I hope you learned a little something about social media and patient-centered social media,” she said.