Long gone are the days when a sick person would curl up on the couch, shivering and suffering in silence. With the answer to seemingly everything just a click away, individuals increasingly tend to google their symptoms before making an actual appointment with their physician. When a diagnosis has been confirmed, attention sometimes shifts from an online search for an antidote to the patient reaching out to those suffering from the same condition. So the recent proliferation of patient support groups on various social media platforms really comes as no surprise.
Social media (SoMe) platforms are more than a conversation channel for patients. Most support groups operating on SoMe are seen as a safe haven for those suffering from the medical condition that the group was set up for. The semi-opaque nature of the online community provides members with a relatively reassuring environment to openly share their concerns, treatment options and even discuss their choices of physicians. However, according to Mr Sean Matheiken, a consultant vascular surgeon at Bedford Hospital NHS (National Health Service) Trust and digital health innovator, these interactions are often limited to patients only. The dialogue between patients and medical professionals on these platforms remains, at best, minimal and usually completely non-existent.
“When dialogues do take place, they come from a few very high profile physicians or surgeons, often only those with a TV or prominent SoMe profile,” says Mr Matheiken. “In addition, patients and medical professionals do not necessarily use the same SoMe platforms. While patients may opt for Twitter or Facebook, professionals tend to prefer LinkedIn or ResearchGate.”
It all means the impact and usefulness of SoMe in a healthcare context is greatly reduced by limiting patients to technical information that does not come from a healthcare professional.
Mr Matheiken hopes to see more medical professionals being a part of online support groups, to improve the quality and effectiveness of information that is being shared. As SoMe isubiquitously accessible, he believes it is not only patients who wish to learn more, but also those in the professional field that will benefit from what is being shared. “Most people will be familiar with a surgical experience being described to them,” says Mr Matheiken. “But they seldom see a depiction of it, let alone a video or a transcription of dialogues in those settings. If those are made available, someone who is about to undergo the same procedure could gain greater insight.”
Nevertheless, patient privacy and information governance guidelines are important aspects for all physicians. These necessary safeguards have inadvertently constructed an insurmountable barrier to surgeon-led SoMe. Indeed, it is important to protect users. After all, even if an individual has given their full consent for their content to be shared online, no one
can mediate the public’s reactions to it. There is also limited control on how the material could be modified – potentially inappropriately – without clinician involvement and how it could be used for myriad purposes once it has been published.
Most importantly, the safety of present SoMe infrastructures remains questionable. To what extent can patients trust a SoMe platform to not use whatever they have uploaded to curate advertisements or other material that are targeted back at themselves? “These problems are inherent within the actual platform, and are not specific to the handling of healthcare related information,” says Mr Matheiken. “It all depends on how companies behind these platforms manage it.”
Interestingly, Mr Matheiken questions why this danger poses less or more of a concern when it comes to healthcare. “Isn’t personal information such as our annual income or contact details equally as sensitive?” he asks. Healthcare is indeed as integral to our existence as all these other aspects of life so the same problem will always exist where personal information is involved. Proscribing healthcare information from SoMe will not, in his opinion, address the root of the problem. “We are probably in the worst of both worlds at the moment, with regards Surgical SoMe,” adds Matheiken. “On the one hand, there is a profusion of misleading information about healthcare on SoMe. On the other hand, professionals feel uncomfortable or reticent about directly engaging with patient-focused Social Media in many clinical disciplines .”
Mr Matheiken recognizes there is a role for patient-driven SoMe or a patient-controlled system where information about one’s medical care is stored responsibly but controlled by the patients; “If the information – a video record of surgery or photographs taken during an out-patient consultation – is kept in a shared, secure database that both patient and physician have access to but only the patient has the authority to allow that information to be utilized or re-shared, it opens up a number of new avenues for fruitful social media interactions.”
A user-driven system will empower patients’ control over their consent by giving them greater retention upon it over the infinite timeline of Social Media. It will increase the quality of the medical information made available on SoMe by virtue of its provenance from a real life clinical interaction. The information in such instances would comprise evidence from a medical procedure or consultation that has been conferred upon a patient. After the user has shared the content, physicians would have the option of providing explanations on the technical details or clarifying any doubts the viewers and readers may have.
One of the most valuable aspects of such a system in Mr Matheiken’s view is that the construct would, to a degree, self-police its quality assurance; “If as a clinician, you knew your consultation or operation would be widely accessible online, would you not ensure that your practice is consistent with best available scientific evidence?”
Nevertheless, Mr Matheiken does recognize the challenges in rolling out a patient-controlled data storage system in a large health organization like the NHS because of the number of departments and stakeholders that are involved. He believes piloting it within a smaller setting, within a positive and forward- thinking corporate structure and among a group of willing professionals, would make for a productive start.
Mr Matheiken emphasizes that encouraging the provision of healthcare information via SoMe is not intended to change the way core care delivery is provided. It is more about utilizing the opportunities to share good quality, verified, reliable content among professionals who wish to learn and patients who wish to be better acquainted with their own health matters
Individuals who have access to SoMe may be more technically adept and progressive, but those who are less savvy will not be disadvantaged because they will continue to receive regular care via existing portals. “I am not proposing a replacement here,” reaffirms Mr Matheiken. “Medical/ surgical SoMe is an additional way in which we can improve the level of medical understanding among the public and provide more ready access to medical knowledge and interventions. It should be democratically done and voluntarily engaged in with no one’s privacy or quality of care being compromised in the process.”