Vlogs Engage and Inform People with Chronic Illnesses Like CF, Researchers Say

Daniela Semedo, PhD avatar

by Daniela Semedo, PhD |

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Online vlogs — the video equivalents of web journals or blogs — can be an important platform for patients and families living with chronic diseases like cystic fibrosis (CF), a way of connecting with and learning from others in similar circumstances, researchers report.

These vlogs, done by patients and addressing all aspects of life with a chronic disease, can also help physicians better understand the needs and priorities of those under their care, said  Joy L. Lee, PhD, a co-author of  Seeing is Engaging: Vlogs as a Tool for Patient Engagement,” a commentary published in journal The Patient – Patient-Centered Outcomes Research.

“It is not always easy for physicians to engage patients in their own care,” Lee said in a press release. “Vlogs may be uniquely suited to overcome barriers to patient engagement for individuals with chronic illnesses, especially those under 50 who increasingly reach out to the internet in so many aspects of their lives. Given the potential impact of online information, physicians and other clinicians should consider familiarizing themselves with key vloggers who can provide a window into a disease.”

Lee is a researcher at the Regenstrief Institute and Indiana University Center for Health Services and Outcomes Research.

In the commentary, the researchers note that certain vlogs,  like all online sources of medical information, are more reliable than others. They recommend that healthcare providers curate vlogs so they might advise patients and their families as to those vlogs of greatest value.

One they spotlight is The Frey Life vlog, which chronicles the daily life of Mary and Peter Frey, and their experiences in managing Mary’s CF. The Frey Life, started in 2012,  now has daily posts attracting an average of 15,000 viewers.

Posts in the vlog include “Cystic Fibrosis Airport Precautions,” “Unexpected Trip to Urgent Care,” and “Why Can’t Mary Eat.” In some posts, Mary answers questions submitted by viewers.

Although the vlog covers many areas of their life, from making dinner to going to the dollar store, it has a deliberate focus on chronicling life with CF, such as posts about creative ways to conduct airway clearance therapy. The Freys interact with their viewers by posting videos that address viewers’ directly, and by providing answers to questions posted in online comments.

“YouTubers like the Freys are becoming influential figures in the lives of many Americans,” said Albert Wu, MD, MPH, of Johns Hopkins Bloomberg School of Public Health, the commentary’s senior author. “Physicians should acknowledge that often they [vloggers] do a better job of engaging some patients, especially younger ones, and should we willing to add vlogs to their therapeutic toolkit.”

CF is an inherited, chronic disease that predominantly affects the lungs and digestive system. People with CF often engage with the healthcare system and with other patients, but barriers can arise due to the debilitating nature of the disease and the complexity of the daily care it requires. In addition, treatment burden may leave patients with little time or energy for regular interaction.

CF patients are also vulnerable to infections, including from one another, and treatment guidelines recommend that they keep at least six feet away, making it difficult to participate in support groups. Vlogs are an online tool, the researchers said, that CF patients can use to communicate with and learn from each other.

“Physicians should consider vlogs as one more tool that they can provide their patients and help them navigate this important resource,” Lee concluded. “And patients should consider vlogs as dynamic sources of information that can help them cope with their disease experience and ask better questions of their medical team.”