In November the Department of Health announced [the NHS Connecting for Health name is being increasingly sidelined in announcements] the rollout in London of Summary Care Records.
The DH said:
“Summary Care Records containing key medical information which will be accessible wherever patients are treated are being rolled out across London, it was announced today. The scheme is taking off across England over the next year as part of a national roll-out of the programme.”
The rollout means that primary care trusts have begun writing to everyone in the capital, setting out the benefits of the summary care record and offering people the choice to opt out of having a central electronic care record.
Says the DH:
“Therecords have already been trialled in a number of regions acrossEngland, with Strategic Health Authorities across the country nowplanning to implement them. For example, East of England SHA expects tointroduce them by the end of 2010.
“The early adopters alreadyshow evidence of improving out-of-hours care, ensuring that doctorshave reliable, relevant, up-to-date information at their fingertips insituations where time is critical.
“The Summary Care Recordmeans that clinicians no longer have to rely on patient testimony,which can often be incomplete or inaccurate. Elderly and vulnerablepatients and those for whom English is a second language willparticularly benefit.”
The DH quotes Maireade Bird, aged 60,from Birmingham, who suffers from a chronic lung condition,Bronchiectasis and Chronic Obstructive Pulmonary Disease (COPD).
“I’mon around 11 medications. I’ve been in situations where I’ve been takenill away from home and neither myself nor my husband could remember allthe details. I also struggle to communicate sometimes because mycondition means I often get short of breath.
“Summary CareRecords can really help in such situations. Vital information about mewill be instantly available to people treating me anywhere in thecountry.”
But for those who want to opt out, the DH leaflet is forcefully discouraging.
“The information in your SCR could save you and the NHS time, but could also one day be lifesaving,” says the DH.
It warns anyone who wants to opt out that:
“Health-care staff treating you may not be aware of your current medications in order to treat you safely and effectively.
“Health-carestaff treating you may not be made aware of current conditions and/ordiagnoses leading to a delay or missed opportunity for correcttreatment.
“Health-care staff may not be aware of anyallergies/adverse reactions to medications and may prescribe oradminister a drug/treatment with adverse consequences.”
Whilethe emphasis in the CfH leaflet is on warning against opting out,London GPs are taking the opposite approach. The Londonwide LMCsassociation of GP practices is making available to local doctors a poster for their surgery walls, and a leaflet for their patients, which warn of the consequences of not opting out.
TheLondonwide LMCs material tells patients that if they want their medicalrecords to stay confidential to this practice and if they wish to be incontrol of their health information they should opt out.
And they should opt out if they are not sure, or are “worried about security” of their health information.
To opt out of the SCR all patients need to do is “sign opt-out form at reception”.
The Londonwide LMCs leaflet tells patients:
“TheSummary Care Record is meant to help emergency doctors and nurses helpyou when you contact them when the surgery is closed.
“Initially,it will contain just your medications and allergies. However, later onas the computer system (known as the “NHS Spine”) develops, many otherpeople who work in the NHS will be able to access it and much more: eginformation from hospitals, blood tests, x-rays and specialists‟letters.
“The information will be sent from practices such asours and held on NHS databases. As with all new systems there are prosand cons; when you speak to an emergency doctor you might overlooksomething that is important and if they have access to your medicalrecord it might avoid mistakes or problems.
“On the otherhand, there is not much evidence that these sorts of systemsdramatically improve care. Having all your personal medical informationin one place increases the risk of other people accessing it withoutpermission (known as „hacking‟) or it getting lost.”
When a patient opts out, the GP practice will set up its systems not to create a summary care record for that person.
Says the LMCs leaflet to patients:
“… It is important to remember that if you have a Summary Care Recordand it has ever been viewed, then thereafter, whilst you can stop anyfurther information being added to it, you will not be able to have theprevious data deleted.”
The leaflet gives three sources of further information:
Thoseworking on IT in the NHS have mixed views on the summary care record.For the database to be useful, opt-outs must be kept to a minimum. Butshould patients have their medical details to a central databasewithout their specific consent?
The DH view is thatopt-in is impractical. Opt-in means getting the specific consent of patients before creating a summary care record.
But the action taken by GPs inLondon shows that getting the consent of patients, and contacting themdirectly, is possible.
It’s astonishing that seven years afterthe NPfIT was announced, NHS Connecting for Health and the DH are onlynow discovering the real hurdles in the path of a centralised healthrecord.
But does the DH care profoundly if the summary care record is a success or not?
Thathas been one of the problems with the NPfIT all along: an approach of”let’s deliver the systems and it’s up to patients, doctors nurses andadministrators as to whether they use them.”
The summary care record may get rolled out nationally. And hardly used.
It would havebeen better for the government, CfH and the DH to have agreed withclinicians, IT professionals and managers what was needed from newtechnology – and then delivered what the NHS was looking forward toreceiving.
London GPs make it easy for patients to “opt-out” of central NPfIT database – ComputerWeekly.com
Summary Care Records making good progress – Smarthealthcare.com
No2ID says “no” to Summary Care Record – Smarthealthcare.com
Remember the blue card? – Moreton and Saughall Massie Matters
Sleepwalking into a database state? – Steve Hemingway