When the heat is over
Record Access Discussion
in The Guardian, 1 November 2006
‘A national database is not essential’
Warning over privacy of 50m patient files
From cradle to grave, your files available to a cast of thousandsWe invite you to continue here to discuss issues concerning record access.
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Healthcare delivery is becoming increasingly complex, using multiple different drugs and other therapies and delivered by multi-disciplinary teams that span a number of different health care organisations in the GP surgery, a community based clinic as well as within the hospital setting. Traditionally after a consultation with the patient, a letter is forwarded on to the GP which can take anything between one day and months to get there. At the same time, GPs are no longer contracted to be available 24 hours a day, 7 days a week for the patient and so those notes are not available for anyone else to see if the patient falls ill outside normal hours. However clinicians are expected to provide the best quality care despite not having access to the most up-to-date medical information. I was once accused by a patient who said “getting information from your surgery doc is like getting information from Fort Knox !”. The NHS cannot continue to work in this antequated manner - this will not be tolerated by many amongst the public especially when they know that there could be a system that would allow their medical information to be available 24 hours a day 7 days a week when it is needed.
I am a practicing GP and part of the Records Access Collaborative which has enabled patients to access their full GP-held medical record over the internet. Patients are now signing up for the service and benefiting from this unprecedented level of access to their GP held notes. My patients are telling me “Being able to share (their) records with another clinician is more beneficial and could be life-saving than the potential risk of their data falling into the wrong hands”. This is not a universal opinion - we do after all live in a world of choice and those patients that do not want it can choose not to benefit from the service. But they are then putting themselves at risk of getting sub-standard care as a result. The solution we have right now is only a “part-solution” because I am unable to offer a view of hospital records or community clinic records etc. NHS Connecting for Health will enable the full service once the Spine has been populated with medical information. The NHS is one large organsiation paid for by the tax payer and has to be able to share information within it to enable it to function in the best possible manner.
In order to improve the quality of care that is delivered, it is important that all information about the patient is available to the clinician who is expected to treat them so long as the clinician has a legitimate reason to do so and can demonstrate this to the patient and to their peers.
We now need to share how this can be enabled safely and ensure that the benefits are communicated to all. One day a life may depend on it.
I believe the sooner that other Health Care Agencies can access and more particularly add to a persons records the better.
Clearly there is a massive duplication in the NHS of Patient data, and equally the Patient is limited to what bit they can see, so a centralised data base would be preferable in that it would be cheaper to run, and more efficient to control and secure. Network communications systems have improved hand over fist during the last ten years and will probably become even faster and more secure.
Hospital update information could be entered directly by the hospital (with no need for any separate system of their own), and be accessible to the GP, Pharmacist, Private Medical Care Supplier, Dentist, Out-of-Hours Clinicians, and equally the hospitals could see data entered by all the others.
Yes this might be cloud cuckoo land, it may even be regarded by some as Big Brother, but all the anomalies that occur where one agency is not passing information on to another would hopefully be eliminated.
The issue of privacy can make or break Records Access. The difficulty of privacy increases progressively and dramatically from patient-maintained health data (EHRs, keeping track of your own data), through patient access to GP data, to patient access to consolidated medical data such as the Spine. In the US, access by insurance companies keen to redline and deny coverage is also a concern.
The Guardian covered a lot of good ground, but is likely to be read as “All Records Access Bad”, whether the Spine or anything else. The editorial writes “In principle, it should be possible to devise the system in a way that couples these gains with stringent privacy safeguards. But that is not what is happening.” No problem here–but what if it were what is happening? Can we make it happen?
I suspect that, because the design process of the Spine has been system-centric rather than patient-centric, it is missing the point of how the patient will benefit and what the dangers to the patient are. A patient-centric design needs to consider not just the IT aspects of security but a legal framework for protocols to use the IT. For example, what (if any) are legitimate ways for law enforcement to access medical data (warrants? court orders?)? What are the penalties for law enforcement’s violations of these constraints? What constitutes illegal access to & use of medical data, and what are the criminal & civil penalties?
Amir tells me that the design of the IT and governance protocols for the “sealed envelope” are a closely-held secret. This suggests to me that the design mechanism is broken, and needs to be more participative. There’s a big lterature on participative design that I can point out to anyone who’s interested.
Can socially responsible software/networks professionals make a constructive contribution to Records Access, or will they be confined to protecting individual privacy (which is important but misses the benefits to the patient of Records Access)?
Mortality v Morbidity it is a patients choice, and is dependent on their trust of those who can change/write their records. Once they can edit their own records this will help.
GP Hereford
Today’s Guardian is reporting that the UK’s Department of Health has now agreed tat patients can “veto” their own records.
see http://www.rodspace.co.uk/blog/2006/12/patients-win-right-to-keep-records-off.html
Having got internet access to my records I can honestly say its fantastic! I have been able to check my records to ensure they are correct, and it has given me control over my own life and health. I can see so many benefits for this to go worldwide. It is reassuring to know what Doctors are writing in their files about you, and you can share this information if you have to see Doctors in Hospitals etc.
Using the internet access records has meant both myself and my Husband are in control of our health, my husband is diabetic and he has given me access to read his records, I understand what he needs to do to ensure a healthier longer life because of this and we are both working together to ensure this!
We support this very much and believe it can make a huge difference to people, GP’s and the nations health.