“All hospitals used social media platforms such as Facebook, Twitter or YouTube” Can this be true? Well not in the UK. The figures come from research done by the US-based Society for Participatory Medicine. They took a look at 14 top-ranked US hospitals and the variety of uses is an instructive contrast to the UK approach. If you look for a Facebook site for Kings College Hospital in South London, you will find nothing except 4 rather lonely recommendations saying how great Kings is. Twitter has a tweet from another South London hospital with a link to the jobs page. Trafford Healthcare offers Twitter advice about winter vomiting and invites you to join in the conversation about the future of hospital services. Twitter is also energetically used by Patient Opinion which cruises Twitter and invites Twitterers to submit their story to Patient Opinion to add to the 33, 975 stories being tracked by 1455 members of NHS staff. Indeed, Twitter is much used for lots of postings about the NHS. My take is that these postings while they are not all written by the Kings Fund promoting their latest conference, do on the whole involve the managerial classes discussing the NHS with the patient voice no doubt present but fragmented, unconsolidated and in need of a Patient Opinion-type site to pull the stories together to create impact and attention.
Blogs still minority taste
Patient blogs in the US survey were in use by 8 of the hospitals surveyed with over half of them using specialised social media platforms like CaringBridge which is a free service channel for patients to report their healthcare journey to family and friends who can in turn post comments. Blogs are an important social media but the research shows that blog creation is still a minority passtime. So we are still looking for the ‘killer app’ that will bring all patients and health care users into the electronic fold, making the conversations comprehensive and all-inclusive.
Patient Portals – the beginnings of mass use?
For me the most interesting activity is found in the category heading ‘Online Health Tools’ which offers an opportunity to makes the patient much more of a partner in the process called ‘participatory medicine. This is the patient portal which gives patients a personalised account used for admin stuff like making appointments but it does include more clinical information like getting results of tests and their actual records to review their own conditions. My thought is that this electronic facility is a way whereby we can extend this idea to embody the principle that not only does the patient have the right of access to their records, they can claim to be the owners of those records and control singly or jointly the electronic vault where those records are stored. The records are about them and the fact that they have been created/ commissioned by others for diagnostic or treatment purposes does not change this. You can think of it as a new secure dimension to a personal Facebook-type Citizen Account we store our own confidential data with access permissions given to authorised users in pre-defined circumstances.
The patient portal then becomes the king-pin of a electronic communications system constructed around the individual’s data. It is easy to sit back and start imagining the regulatory structures and permission processes that could be and indeed must be built around this facility, but it is all there technically already. What could be a better use of Facebooks new Timeline product? Will this data be at risk of being lost, stolen or illegally accessed? Probably but then it will be anyway with the current systems – with our system, at least you might know when it happened and have a clue as to who did it. Does it smack of Big Brother – of course but we will at least have established the principle underpinning the Citizen Record that it is not the property of the State or any other user but belongs to the citizen his or herself.
Remember? Nothing about me without me. Now we can add ‘Nothing about me without my permission to access my data which I own, hold and protect’. Be the boss of the repository of all your history – medical one included. Is this the killer social media app that makes participatory medicine universal as part of the comprehensive citizen record and so transforms the relationship between the citizen and the state? Power is data possession.
The Moore Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations.