Here’s how decentralised software might work for managing health:
First there needs to be an agreed data model. This is probably the hardest part of it. Although there are plenty of examples in industry of people agreeing on a data model. The data model needs to include all of the data which people might want to share.
If it was health data, the data model might include all of the different personal health information we might want to store. It could be our health archive (our record of problems, health issues, pregnancy, genetics, past health emergencies) and current information (needing a hip replacement, current problems, treatment underway).
As an example, yesterday I was writing about the “Pipeline Open Data Standard”, a standard way of holding data for a pipeline, including 19 different categories of data (see http://www.pods.org/pods-model/what-is-the-pods-pipeline-data-model/ )
Then there needs to be a suitable architecture where someone takes responsibility for data, suitable security / confidentiality is met.
For health, perhaps we’d all have a local organisation which would manage our data – for example our local doctor surgery. This organisation would host the data on their own servers, and take responsibility for the accuracy of it, and it could be done on a small scale (no big IT needed).
Accuracy is essential. But because the local organisation is basically chosen by us, and we have a strong incentive for our health data to be accurate, it ought to work. (Perhaps we could update / correct our own personal health data online).
Then – and this is the clever bit – everyone else could access the data as required, subject to being authorised (probably by us as private individuals). The regional hospital can plan out its hip replacement operating room by downloading data of everyone who needs a hip replacement, looking at any special needs, and making a schedule. The same for any other non emergency services. The data can be made available in aggregate for managing health services, matching supply against demand and making predictions for the future.
The trouble with this idea – and why it would probably never work – is that big health organisations probably have an entrenched mindset that the way to get their IT done is to go to a big software company and sign a big cheque. IT managers, in health as anywhere else, have built their careers and experience in dealing with big IT companies.
And a system like this does not have anything to offer big IT companies. If they build a data model, they’ll want to make sure they have an advantage over competitors somehow in implementing it (which would destroy the whole point). There’s no need for my local surgery to contract with IBM to build their own system, a local IT company could do it just fine. And the same for all the other systems.
Meanwhile health IT has a bad reputation – particularly in the UK – because of contracts delivered to big software companies, who have built centralised systems, which haven’t delivered. (Which is not surprising if you consider that the complexity of software seems to have a logarithmic relationship to the size of it – making a national IT system centrally controlled is perhaps beyond the capability of any one company).
So this may mean it could never be built. Yet Wikipedia got built without any central control. Maybe Jimmy Wales could build something like this?