LUpus Patients Understanding and Support

Social networking for patients

Social networking for patients

; doi: (Published 10 August 2016) Cite this as: 2016;354:i4201

Is social media saving lives? Or is it spreading poor information and damaging private confidentiality? The rapid rise of patient support groups on social media is putting some fundamental ethical questions into the spotlight. Stephen Armstrong reports

Patient groups began as small gatherings for people with the same condition in the same area to meet each other. They then evolved into highly professional operations, with often national or international organisations doing everything from connecting patients to raising public awareness of conditions and lobbying governments on behalf of their members. In the past decade online patient groups—where global communities of patients are active 24 hours a day—have flourished.

Invaluable for patients

Cathy Stillman-Lowe, a volunteer health writer, came across her first online patient group—a Yahoo chat forum run by the Depression Alliance—back in 2005. “It was a very rudimentary group,” she explains. “It was moderated by a part time volunteer, which was tricky when people had those 3 am panics. I’m now part of Bipolar UK’s e-community. The chat rooms are moderated at all times, and there’s a red panic button you can press if someone says they’re going to commit suicide, and they’ll contact them and help.”

Today social media have become invaluable for many patients, especially those with unusual or rare conditions. Irenie Ekkeshis was diagnosed with acanthamoeba keratitis, a rare amoebic infection of the cornea,1 in January 2011. “For rare diseases like mine no offline community existed,” she told The BMJ. “Most of the information I could find was either inaccurate or terrifying. But I found a Facebook group, with only 38 members at the time, and the relief was enormous. I was so happy to connect with someone, to share the same emotions and experiences, the same anxiety and frustration and shock in a normal, accessible way.”

Joanna Holmes’s daughter was diagnosed with the very rare chromosome condition Emanuel Syndrome last autumn. Only 500 cases are known worldwide.2 As a speech and language therapist, Holmes uses Twitter for her work, so she reads tweets about Emanuel Syndrome by experts and patients but prefers not to post about it. She is more forthcoming in a Facebook private group, telling The BMJ, “It’s good to have a place you can describe everything. But I can also talk to some of the young people and realise how happy they are and what good lives they’re living.”

Raising awareness

Facebook, the world’s leading social media network, with some 1.09 billion daily active users3 radically changed the structure and content of online support groups by enabling anyone to set up a group, usually without expert moderators.

The Facebook page for the Cluster Headache Support Group was launched in 2011 by Chris Hannah, a former drug company employee who has cluster headaches. The group offers two separate Facebook pages—one is open to all and contains information about the condition, which aims to raise awareness of cluster headaches, especially among patients who may have received incorrect diagnoses.4 This page attracts close to 98?000 visits a month, says Hannah. The other page is a private group hidden from public view for patients and carers only, which currently has 7000 members.

Like physical patient groups, online groups don’t just enable patients to share experiences and support each other. Research from the University of Toronto conducted in 2011 found that the 620 groups on Facebook for breast cancer had purposes including fundraising (44.7%), raising awareness (38.1%), promoting products or services (9%), and exclusively offering support to patients or caregivers (7%).5

A Saudi Arabian study published last year found similar ratios among 187 public, searchable patient groups for hypertension on Facebook—59.9% raising awareness and 11.2% offering support.6 Mohammad Al Mamun, lead author of the study, told The BMJ that he suspected at least the same number of support groups existed as private groups, hidden from Facebook’s search engine.

The BMJ contacted Facebook to ask how many patient groups the company hosted, what sort of oversight there was for patient groups, and whether Facebook worked with drug companies on advertising or data gathering. A company spokesperson refused to comment, offering only a link to the general Facebook groups information page, which contains no data.7

Information exchanges

When setting up a Facebook group, founders have three privacy options—public, closed, and secret. Anyone can see or join a public group, whereas they have to ask to join or be invited to join a closed group. People can only join a secret group if they are invited by an existing member. Following the success of his Facebook group, in 2012 Hannah created the Cluster Headache Support Group charity in the United States, which conducts most of its activity online. He says that the Facebook pages serve the non-profit’s key objectives—“raising awareness and offering compassionate support, but also suggesting, funding, and taking part in research objectives.”

As a result of information exchanges between members of the group and physicians at the Jefferson Headache Center in Philadelphia, the centre has begun trials of ketamine infusion therapy for cluster headaches with members of the support group, including Hannah. To ensure this kind of response from the healthcare and drug industry, Hannah explains, he set out a series of rules for participation in the private group, “including a ban on pseudoscience, reliance on trustworthy advice backed by medical science, and intolerance for bullying.” He says, “That isn’t the general rule—indeed, we faced a tremendous backlash from the existing online community, especially over our rejection of so called citizen science including the use of LSD and magic mushrooms.”

Some US patients disagree with a ban on treatment suggestions that aren’t recommended by healthcare professionals. “If you are seriously ill, you cannot assume that your doctor is an expert who keeps up with current research,” argues Liz Logan, from New York, whose husband was diagnosed with Parkinson’s disease two years ago. “You have to do your own research. You probably will have to change doctors more than once, and social media is where you get information from people most invested in getting better: other patients. I know far more about Parkinson’s at this point than the first idiot neurologist who dismissed the possibility of my husband having Parkinson’s, resulting in two miserable years before diagnosis by a movement disorders specialist, which I wouldn’t have known was the right kind of neurologist without social media.”

The risk of social media being used for promotion of dangerous or unsuitable remedies is a big concern for healthcare professionals. Graham Atherton, patient involvement lead at the National Aspergillosis Centre in Manchester, UK, which researches and treats infectious diseases caused by the fungus Aspergillus,8 warns that patients on social media can get “a bit conspiracy based. Recently we had a number of patients talking about yeast overgrowth thanks to posts advertising treatments in a Facebook support group from the US. I had to check in PubMed, then engage with the group.”

“Peer support between patients can be hugely beneficial for their wellbeing during an illness, or when in recovery, and social media can provide a convenient, accessible platform for this,” explains Maureen Baker, chair of the Royal College of GPs. “However, while we encourage patients to take an active interest in their health, using online support groups, and other tools to share medical ‘tips’ could result in them receiving misleading, superfluous, or incorrect information, so these forums should not be seen as a replacement for proper medical care.”

US digital marketing agency Fathom warns its healthcare clients that “there is no guarantee that a closed Facebook group is actually 100% private. There have been instances where posts in closed groups have appeared on group members’ friends’ feeds. Additionally, posts in closed groups and even secret groups have also been found on non-members’ feeds. There is always a risk that a group member may share information that goes against the group rules and guidelines.”9

This lack of control coupled with Europe-wide regulations codified in the United Kingdom under the Association of the British Pharmaceutical Industry’s code of practice10 mean that drug companies outside the US and New Zealand are steering clear of all Facebook support groups. Under the code, explains Tim Worden, head of the UK Life Sciences Regulatory Group at legal firm Taylor Wessing, drugs companies are forbidden to market directly to patients and are responsible for any and all content—including patient comments—on any website or Facebook page that a drug company sets up, funds in any way, or even links to through its own site or Facebook page.11

“If a drug company is financially involved, in any way, with a patient group that has a Facebook page with comments from patients about using prescription drugs in off-label ways, then the company can be held responsible for promoting off-label use,” Worden told The BMJ. Only comments on pages that the company has no links to at all—not financial or through recommendations or online links—are deemed outside the company’s control. “Pharma and healthcare professionals in the UK are aware that social media is a powerful tool but are unsure how to harness it,” Worden says.

Few physicians are currently using social media to talk to patients—a practice that the General Medical Council suggests be treated cautiously.12 For some patients, the idea of any healthcare professionals taking part in patient groups is an anathema; many see them as private patient spaces where people can vent frustrations about treatment. For others, like Annie Astle, whose 13 year old daughter has type 1 diabetes, it could have benefits. “Diabetes is well understood in the lab, but out in the real world every patient’s experience is radically different. It would do clinicians good to read and understand personal stories.”

If clinicians are to engage, Astle adds, they need to keep up to date. Astle’s daughter, she explains, uses Instagram and Snapchat—mobile phone based social media platforms based around pictures—rather than Facebook or Twitter. “Instagram is like blogging, so I understand that,” says Astle. “Snapchat though, where pictures are sent as text messages that vanish after 15 seconds, I’m not sure I understand that. I have no idea how clinicians could use it even if they did understand it.”



Moorfields Eye Hospital. Patient information—external disease and corneal Acanthamoeba keratitis.


Emanuel Syndrome.


Facebook. Company info.


Facebook. Cluster headache support group.


Bender JL, Jimenez-Marroquin MC, Jadad AR. Seeking support on facebook: a content analysis of breast cancer groups. J Med Internet Res;:. doi:10.2196/jmir.1560 pmid:21371990.


Al Mamun M, Ibrahim HM, Turin TC. Social media in communicating health information: an analysis of Facebook groups related to hypertension. Prev Chronic Dis;:. doi:10.5888/pcd12.140265 pmid:25633486.



Facebook. Facebook groups.


National Aspergillosis Center. Support for people with aspergillosis.


Fathom. Six considerations when using Facebook groups in healthcare. 23 Sept 2015.


Association of the British Pharmaceutical Industry. Code of practice for the pharmaceutical industry. 2015.


TaylorWessing. Social media in the pharmaceutical sector. June 2013. united-kingdom.taylorwessin...


General Medical Council. Doctors’ use of social media. 2013.

LUpus Patients Understanding & Support (LUPUS) on Facebook:

2 Replies

Many thanks for this: an important & deeply fascinating subject, close to our hearts 🌟🌟🌟🌟👏👏👏👏🍀🍀🍀🍀


Thank you very much for your reply. Your views are very important and I value the opinions of our members because unless we know what other people need, it is difficult to be able to provide the kind of support needed.

If you have any ideas, please share them!

With good wishes,


1 like