Facebook Groups Can Provide Support for Patients with Rare Diseases and Reveal Truths About the Secret Lives of Patients

See Clinical Research on Page 1317

Facebook’s corporate mission is “to give people the power to build community and bring the world closer together. People use Facebook to stay connected with friends and family, to discover what's going on in the world, and to share and express what matters to them.”¹ Facebook Groups are communities within the Facebook network that have shared interests. While most of Facebook is about seeing what people you know in the real world are doing and thinking, Facebook Groups is about interacting with people that have similar interests. These groups are created and administered by Facebook users. The discussions and postings are driven by participant interest. Groups can be open, closed, or secret. Open groups are available by searching and anyone can join; closed groups are visible by search, but potential members must obtain permission from an administrator of the group. Secret groups are invisible, and people can only join after being invited by a group administrator.

Facebook Groups have been adapted to form support groups for people with chronic disease. This was first studied by Farmer et al.² in 2009 only 5 years after Facebook was founded. In 2011, Bender et al.³ did a deep dive on breast cancer Facebook Groups and found 46 disease support groups. These groups were intended to meet the informational and emotional needs of breast cancer patients, survivors, family members, and friends. The availability of social media to provide support groups is especially empowering for people with rare diseases. Rare disease does not have a singular definition and has been variously defined as a disease prevalence of 1 in 2000 people in the European Union to affecting <200,000 people in the United States.⁴ People with rare chronic diseases often are frustrated by not being able to find a cohort of people that understand their circumstance. They are forced to repeatedly explain their condition to social contacts and medical professionals. Physicians often have limited or absent experience with rare diseases. Imagine hearing your doctor say, “I’ve haven’t seen this before, but I’ve read about it.” Or how about, “I saw one of these cases back in fellowship”—not exactly a confidence-inspiring interaction.⁴ Understandably, patients may have doubts about their physicians’ ability to care for them. Patients with rare diseases want to establish contact with fellow diseases sufferers in the form of support groups. In-person support groups are unrealistic when a disease affects only a handful of people in any one geographic region.

Facebook promises and succeeds at connecting the world, allowing patients to meet, discuss, and relate. These groups, and others like them on social media, are free and highly accessible via computer or smartphone. It is no wonder that Facebook groups are popular with patients. There is measurable value in the benefit of social support. A 2011 international study of dialysis patients found poor social support to be associated with increased mortality and decreased adherence to treatment in patients undergoing dialysis.⁵ Similar findings with faster CKD progression for CKD not on dialysis were found in Korea.⁶ Providing adequate social support for patients with rare diseases is likely to benefit patients, not only with subjective assessment of quality of life, but with objective measures of disease progression and severity.

While many researchers have looked at the role of Facebook Groups in disease support, Vasilica et al.⁹ come to this topic with fresh questions and new goals. As nephrology moves from a disease-centric to a person-centered care model, it comes with the recognition that patients spend only a small amount of their life in a health care setting.⁷ We live in a time where people spend more and more of their time engaged in social media, up to 17 hours a week.⁸ If we are going to understand the questions, needs, and concerns of patients, we should try to get that information from the place patients are getting it rather than a contrived focus group. Vasilica et al.⁹ were interested in patients with immunoglobulin A (IgA) nephropathy and engaged with a Facebook Group dedicated to this rare disease. The authors point out that the demographics of IgA nephropathy skew younger than other nephrology diseases, making it a good fit for a social media–based investigation.

The investigators first created a thematic framework using face-to-face patient focus groups to identify unmet patient needs. After gaining permission from members and administrators, the authors then scraped 2 years of posts to the IgA Nephropathy Support UK Facebook group, a closed group. All identifying and personal information were removed from the posts. The investigators then analyzed the content to identify unifying themes. Interestingly, but probably not surprisingly, the themes identified through social media differed, significantly, from the ones identified by face-to-face focus group.

The Hawthorne effect is the concept that individuals change their behavior when they know they are being observed. Though the existence of this effect is debated and has been debunked in some psychology studies, it is intuitive that participants of a monitored focus group may not feel as comfortable sharing their needs.⁹ By looking at the discussions of a closed Facebook group, Vasilica et al.⁹ were able to collect an uncensored list of needs and concerns. One revelation from this study is that in closed groups, patients asked about areas of knowledge that are not settled science (for example, therapies that have not been approved and the role of dietary protein in the progression of IgA nephropathy). This raises the possibility that the designers of the focus group steer away from areas of medical and scientific ambiguity. In the desire for doctors to be leaders and advisors, might we avoid gray areas with less certainty?

Another stark difference in the two lists was the importance of symptoms. While the focus group did not establish patient symptoms as an information need, in the Facebook Group, symptoms accounted for the largest share of the posts (647/1959). The investigators broke down the symptoms and found blood (presumably in the urine?) to be the most common topic followed by pain. Patients repeatedly discussed that kidney pain was ignored and de-emphasized in clinical encounters.

Another stark difference between the two lists of identified needs was the importance of disease progression in the face-to-face list but not among any of the issues in the Facebook Group. The other unique category was “comorbidities,” which was in the Facebook Group but not found in the face-to-face focus group.

Vasilica et al.⁹ have produced unique insights through a novel leveraging of a private patient forum to determine the information needs of patients with IgA nephropathy. On first read of the article, we were worried about privacy implications of reading comments that were not intended for medical professionals. However, we are reassured by the investigators getting permission from group members as well as group administrators; the stripping of personal information; and the use of patient representatives when evaluating the data. In addition, when we surveyed other studies on the use of Facebook Groups as medical support groups we could not find any consensus on appropriate privacy safeguards beyond those used by Vasilica et al.⁹ Lastly, patients’ expectation of privacy on Facebook should be lower than patients have in an examination room. Though the Facebook Group was closed, at the time of the data collection the names of the members of the group were available without having access to the group. Imagine posting the names of members of any medical support group outside the meeting space. This is a process that Facebook has since corrected, but it is only the most recent of a long series of privacy missteps that Facebook has endured in its 17-year history. We refer interested readers to the surprisingly long Wikipedia entry on privacy concerns of Facebook.¹⁰

Vasilica et al.⁹ have found a unique source to determine the informational needs of patients with rare diseases. While this approach is thorough and offers unique insight not available with traditional focus groups, there are delicacies within the application of such a practice. This study was conducted with permission from the support group leadership, including patient representatives. Hopefully, if such results were to be mined in the future, forums would notify any participants on “entry” that their posts were subject to review. If nephrology is going to truly implement person-centered care, such efficiency breakthroughs are essential because as von der Lippe et al.⁴ expressed, “There are between 6000 and 8000 rare diseases, which means that although each disease is rare, it is not rare to have a rare disease.”