By silicon.com, 18 December 2006 15:25
News today that the NHS has been forced to allow patients to opt-out from sharing their information on the forthcoming electronic patient record system reflects the terrible reputation the public sector has built for IT projects and data protection.
In truth, with the government's history of disastrous tech projects and giant leaks of personal information, it is hard to blame patients for being nervous about allowing their data to be shared.
Still it is shameful public confidence in these projects is so low that a sizeable number don't want to risk having basic medical data on the network, even though there are clear advantages to having that info recorded - such as having a patient's medication allergies available when admitted to A&E.
Patients have legitimate concerns that their personal data will be put in danger - and by allowing them to opt out the government seems to be admitting to doubts about its ability to keep data safe.
It is not as if that data is especially safe at the moment, and so perhaps some of the objections are based on a lack of information.
After all, at the moment patients have some security through obscurity. It's relatively difficult to get at the data in a GP practice, if only because much of it is sitting in a paper document in a filing cabinet or on the GP's computer system.
Few hackers would waste their time trying to attack an individual GP's office to access data - in contrast the uploaded care record would be a very juicy target for a hacker to go after.
But the NHS should be able to provide better security than an individual GP can come up with. And yet it seems many patients don't believe that it can.
There is a danger this will turn into a missed opportunity to save lives. Why let vital information rot in a doctor's file when it could be of use in an emergency situation?
There is a risk we will end up with a two-tier health service, where some are confident enough about the design and security of the system to allow their data to be shared while others will shy away, fearful their data will be poured over by snoops and hackers.
The broader question is how to address this public crisis of confidence in the performance of IT projects. After all, if the public gets a taste for opting out because they don't trust the widgets to work, the government could find itself short of more than a few patient records.
Comments
There are 7 comments. Join the discussion
1. anonymous
It's not just that we don't trust the government (and uncle Tom Cobbley and all who have access) to keep it secure, there's also questions about what they (or a successor) will do with it.
Given the way the current government is arming itself with all sorts of disproportionate measures (like collecting by force DNA from people not even charged with any offence), few people think it will be long before they re-define the function of the central records system to include an "anti terrorism" function. How long before they start trawling through medical records and start picking peope up off the street for no other reason than "having a particular ailment" ?
Once again, it's not just what teh current government will do with it (though there's enough grounds for suspicion there), but what a future government will do once it too late to change your mind.
2. Optymystic
I recently took my mother to hopital. She was tested and screened in A&E by professional nurses and doctors. Three hours later the same tests and screening checks were carried out by more doctors and nurses in the admissions ward on the floor above ignoring the possibility of using the previous checks.
The health service is strongly resistant to the use and transfer of data. Knowing that certain service users have withheld their data will only serve to reduce confidence in the system. If you don't trust the data and you expect much of it to be withheld, then you don't even bother looking.
3. Anon
Absolutely, The Gov have along with many other projects ignored very creditable comments that some of the plans were not workable. Time and time again against the advice of many they press ahead regardless. The biggest issue facing everyone of us should be, if the DVLA can sell your details to pretty much anyone, e.g. Tesco's, B&Q's outsourced carpark management co etc, what safeguards would we have that one day insurance companies could not buy info on us. Be a great revenue boost to help recoop the overspend!
I accept that improved, instant and specific access to "things" could prove vital, but using that argument why don't we fund Air Ambulances instead them being run by charities?
I for one can't trust the Gov that fails to meet most of what it claims it will do, as this could be understood to mean if they say they won't they probably will!
4. anonymous
The problem with trusting to the Connecting for Health records systems is that CfH has done everything wrong from the start. Most significantly, in their rush to deliver a big bang or big impact, they appear to have ignored users and the subjects of the records.
Why should we trust the results of the paranoid minds of CfH, when they have caused such alarm amongst the best ICT academics in the UK and have failed to engage with what started as intelligent and responsible interest?
5. David Davies
What would the web be like if all pages were held centrally and administered by a central team of high priests?
The answer should be to leave the data where it is, with the doctor or the hospital, and establish robust standards for interoperability.
6. anonymous
A couple of years ago I was working for a central governement agency as an Technical Director in IT, within the Public Sector. I had grave concerns then to the validity of some of the project work within the NHS, and I raised those concerns to my superiors, unfortunately it fell on deaf ears as they were more inclined to listen to the vendors than their internal advisors. This unfortunately, in my experience (25 years) happens right across the public sector. Vendors are out there to make a profit most don't care about the individual project, in this department their attitude is "win some, lose some". The other unfortunate issue is those of us with the knowledge, skills and experience are at a more mature age and therefore are deemed surplus to requirement and have to seek employment overseas where I now work passing on the benefits of my vast experience. I am sorry this is a negative response to your letter but in my opinion it is a fact that Boards and senior management in the public sector are the reason for the sad state of our disgraceful public services. We are slowly becoming a third world country in that respect.
7. Ken Rigby
Focussing on IT problems does not solve the fundemental problem that all system/software system development suffers. The 'concept crisis' is a major problem with all complex systems; at the root is the visualisation of the component parts that make up the solution. If these are not understood or fail to be communicated for future re-use or maintenance then the project is doomed to eventual failure.
see htp://mellanium.com for information