…and then I found their FB pages and for the first time felt I wasn’t alone. I would find myself crying at people’s answers. I was so relieved and happy to have found all these people who knew, really knew, what it was like to have had what I had had all these years”

Online community (Facebook) user

Finding an online community can be transformative for patients. No more isolation, people who really understand there for you 24/7, information, advice. So why is that, still today, 70% of patients with a long term condition (LTC) have not talked with anyone with the same condition?

Creating and inhabiting an online identity is not straightforward.  Getting online can be technically difficult and once there anxieties abound – trolls will get me, my identity may be stolen, the NHS will punish me, I’ll say something stupid. Revealing your condition online may also have wider implications for employment, or for relatives. Even for the socially media savvy creating a health-related online identity can increase vulnerability and may change how the world sees you. No wonder lurkers outnumber contributors by at least 10:1.

For staff the dilemmas are even worse. How do I keep appropriate boundaries? Will my professional body disapprove? Will I be overwhelmed by patient demands?

As a result, our online identities tend to be cobbled together, a diverse mix of snippets that presents different facets of our lives via different channels to different imagined audiences.

Within and around this the online phenomenon of context collapse can make a mockery of our careful online constructions – suddenly you realise that you are looking at your cardiologist’s Facebook page.

Interviewees who used online health communities a lot also spoke of how granular their use was – Twitter for this, Facebook for that, private email groups for their most difficult discussions.

Neither Facebook [see why is there no FB for health] nor most patient organisation sites afford the functionality needed for these different levels of privacy, sharing, personal data, or information gathering or giving.

Finally for many online services and organisations, the ‘last mile into the NHS’ can be a huge barrier. A service like uMotif or an app developed by a patient organisation to help patient and clinician may only really work once it is connected to the patient’s record via the NHS ‘spine’ architecture. For understandable reasons achieving this entails very high levels of security and governance.


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