Care dot data was explained to every English household by way of a leaflet delivered with the junk mail. I don’t think I got one, though I haven’t been through my recycling to see if it ended up there, but I have looked at the online leaflet. It explains that your GP is required to upload your electronic coded data to the Health and Social Care Information Centre (HSCIC)
Care.data will extract coded data only. When you visit your GP, certain words are coded when they are added to your electronic record. GPs vary considerably in how much data they code. A significant part of our income is linked to accurate registers for heart disease or cancer, or for numbers of patients who have smoking status recorded, or for blood pressure control under a certain level. Codes enable us to count these up, see how good we are at identifying patients with different conditions and at treating blood pressure, diabetes or other conditions. The things we have to code change frequently and so some GPs try to code absolutely everything, to be on the ‘safe side’, whilst others don’t code enough. The following is an example of a GP consultation. I have written all the information that is coded, usually automatically as it is typed in, in bold:
Harold Smith. Male D.o.B. 14/10/1948. NHS number 4744 4394 3205
Address: 30 Chester House. Hoxton N1 5HL
Ethnicity: white British. Religion: Catholic
Problem: Type 2 diabetes
History: since bereavement hasn’t been taking meds regularly, often misses doses, tired/ tearful.
No previous DKA/ last HbA1c 7.9
Has also been drinking up to bottle of wine at night to help with sleep, would like a few sleeping tabs. Has used them before when she was on ITU last year. No concerns r/e overuse. Discussed risks with alcohol. Prefers not to drink.
Results: Alcohol consumption 69 units/ week
Plan: see other entries/ review at next apt in 2w
History: see under T2 DM entry
Problem: Moderate depressive episode
History: 1 month since Evie’s death. Unexpected. Still v. upset. Prefers not to see bereavement counsellor, daughter Sue is around / supportive. No sig. PMH depression/ no suicidal thoughts
Results: PHQ9 18
Prescription: Zopiclone 7.5mg 7 tabs. One to be taken at night prn.
Problem: Essential hypertension
History: see entry under T2DM
Results: BP 140/80
History: worse since Evie died. Bilateral. Assoc with hearing loss. Interferes with sleep/ conversation. Would like ref to audiology
Examination: ear canals clear, Webers/Rhinnies symmetrical.
Zopiclone 7.5mg. 7 tabs. One to be taken at night prn.
Metformin 500mg. Take 2 tabs bd
Amlodipine 10mg. Take 1 tab od.
Ramipril 5mg. Take 1 tab od.
Atorvastatin 10mg. Take 1 tab at night.
Recent results: 12/02/2014
Hb A1c 7.9 (marker of diabetic control)
Creatinine 110 (marker of kidney function)
ALP 122 (liver enzyme, measured in patients taking medication to lower cholesterol)
It is important to note that none of the conversations are coded, only words referring to diagnoses, results and medications. Some of the care.data will be fully anonymised so that any details that could link this to a particular person are not included. This will allow us to study disease prevalences, medication use and so on. Some of the care.data will be pseudonomysed by the HSCIC so that the dataset they intend to release to researchers and public health analysts will have a pseudonymised ID number (to filter all records by that patient), a five year age band rather than a date of birth, and an output area rather than a postcode. This will make it possible to see, for example, how many elderly white men in an a particular area with diabetes are being prescribed Atrovastatin and what affect it is having on cholesterol levels and compare it to different parts of the country or different ethnic groups. In theory, someone could back track and identify you with this data, but it would be pretty difficult and illegal. It is worth noting that in Wales and Scotland they’ve decided that the English method of pseudonymising isn’t sufficiently secure and have opted to do things differently.
But like the vast majority of doctors and researchers, and many patients, I think care.data has great potential. When very large numbers of people are studied, researchers are more likely to spot rare effects or rare conditions. You could study, for example whether different drugs used to treat high blood pressure are better at preventing strokes in men or women of different ages or ethnicities. It can help to monitor the effects of the massive changes and swingeing cuts to the NHS by looking at, for example inequalities in referral rates for physiotherapy or fertility treatment in different parts of the country.
One of the main risks is that the data is inaccurate. In the example above, Harold has a code for ‘Moderate depressive episode’, but he is not depressed and has no past history of depression. The code will stay in his records unless someone deletes it. The alcohol consumption has also been coded and will stay on his record. It is quite common for results like this to be coded when a patient presents in exceptional circumstances, in a particular context. Unfortunately a code doesn’t come with a context and once the circumstances have changed, the doctor and the patient may know that alcohol is no longer a problem, but not add a new code. In my experience of working in GP surgeries for the last 14 years, every patient with a significant medical history, has erroneous codes. Often they are relatively minor, such as a code for ‘sciatica’ instead of ‘back pain’, but it’s quite common to have a code for ‘angina’ which is due to heart disease, instead of ‘chest pain’, which can be due to anything.
It’s important to understand that GP records are like a notebook or aide-memoire for GPs who might be trying to figure out what to make of their patients’ symptoms. We note down lists of potential diagnoses, different symptoms and possible investigations as we go along. The coding was designed to facilitate payments but not to help us with diagnostic puzzles. To make the coding easier, words are recognised and allocated a code, whether or not they are significant. Many GPs uncode words as they go along, but it can slow things down so others are less fastidious, thinking, not unreasonably that it makes no difference, because they are not treating it as a diagnostic code, for insurance or research purposes, but as a form of note-keeping. When codes are extracted from GP records, they are stripped of context. If coding was designed for insurance or research purposes it wouldn’t work the way it does.
I think that a pre-condition for care.data should be that patients can check their coded data. A tiny minority of GP surgeries already allow this, and it would help improve the accuracy of the records and improve trust. At the same time, this coded data should be available for hospitals to access should you be admitted, saving time and improving safety. Whilst some GPs are worried that anxious patients will be made more anxious by having access to their data, evidence refutes this. In nearly 20 years of working in the NHS in hospitals and general practice, there have been constant complaints that information about medical conditions, medications and allergies cannot be easily shared. Unfortunately care.data doesn’t address this.
Hospital data is already being sold to health insurance companies. If you apply for health insurance you have to disclose your present and past medical history and any medications you are taking and your GP has to confirm that the information is correct. It is likely that in the event of care.data being made to insurance companies, it will be significantly more detailed than the information you are required to disclose at present, unless they ask for your entire GP record, which they can do, but only with your signed consent. A lifetime of coded GP data, is clearly much more detailed than the boxes ticked on a form that you fill in yourself. This is very important, especially when you consider the practice of rescission, when an insurance company will retrospectively examine a patient’s medical records to find a reason to cancel the policy. In the example given above, the code for alcohol consumption will be picked up, but the context – contained in the free-text- will not. As a result, the insurance premiums may be increased and any conditions related to excessive alcohol consumption, whether or not they are caused by it, may be excluded.
Effective care depends on doctors and patients being able to trust each-other, especially in general practice where very personal, emotional issues are so often wrapped around other health concerns. If patients are afraid that everything they say will be coded and potentially used against them, trust will very rapidly and perhaps irreparably, be lost.
Where things also get interesting is in the use of care.data for commissioning and how this might relate to insurance companies.
Most commissioning in the NHS is done by groups of GPs in Clinical Commissioning Groups (CCG). They work with local hospital and community healthcare providers to design contracts for everything from diabetic eye checks, physiotherapy, cancer-care and so on. After the NHS act, Clinical Support Units were developed to support groups of CCGs because commissioning is technical, legalistic work beyond the skill set or capacity of CCGs working alone. The government have announced that CSUs can be privately run and managed and are actively seeking private investors.
It is generally acknowledged that care.data is essential for effective commissioning which in essence is the planning and contracting of care for a population. This kind of work is also done by health insurance companies. They are also in the business of risk selection – picking individuals at low risk of disease who least likely to cost them money, and service restriction – contracting with a limited range of providers for a limited range of services. The think tank Reform, whose recent chief executive Nick Seddon was appointed adviser to David Cameron, have been employed by the Shelford group of top NHS trusts to look at, amongst other things, personal payments for NHS care. Changing the NHS to an insurance system might be political suicide but technically it would be enormously facilitated by care.data.
The main effect of the NHS reforms has been a massive destabilisation of the NHS with the future of hospitals and services less certain than in any time in its 65 year history. Many of us are very concerned that out of this chaos, insurance companies will be given the job of NHS commissioning and care.data is part of that. This does not negate the enormous potential benefits for research and public health, but does help to explain the concerns of people who are objecting.
Ben Goldacre wrote an excellent summary of care.data which complements this blog. In short he says that the government must explain what data will be used, by who and for what. They must give examples of what will be allowed and what will not. Secondly they must explain how this data will save lives and how risks will be mitigated. Finally they must make it clear very severe penalties must be imposed for misuse of data, fines, for example, are useless. (I await news on this with baited breath, Ben suggests hanging miscreants from lamposts …)
An opt-in system would mean that overwhelmingly patients who are vulnerable, demented, illiterate and disorganised will not be included. This risks leaving the people who most need care out of research.
The government promised no more top-down reorganisations, no NHS privatisation and ‘nothing about patients, without patients’. When we raised concerns, we were patronised and told that we didn’t understand the reforms properly. They paused the reforms, ‘re-communicated’ them and continued without any substantive changes. The pause just announced in the care.data programme is highly reminiscent. They have lost public trust, and will have to work very hard to gain it back before the pause is over.
Unanswered questions via Bengoldacre today:
1.Do care.data team accept they should’ve had processes in place, to adjudicate on applications for data, *before* launching to public?
2. Do they accept this is more than a comms problem; and will they set a *date* for making a proper, concrete offer for the public?
3. Will HSCIC make fully available ALL documentation on the dodgy applications they incorrectly approved: minutes, attenders, application.
4. What are the data security risks for the organisations and individuals for whom the HSCIC incorrectly gave millions of patients re-identifiable patient data?
MPs say care.data is at risk after Tim Kelsey and other members of the HSCIC give evidence to the Health Select Committee today. BBC News.
If you use twitter, read tweets from @bengoldacre and #caredata to see the proceedings of the Health Select Committee today (25/02/2014) in which those in charge of the care.data program gave a pitiful performance and were completely unable to give any assurances about data safety.
Care data leaflet
HSCIC admits rules were not followed when hospital data was handed to insurance industry’. BBC News 24/02/2014 This report is particularly worrying because the HSCIC won’t say which rules were broken, nor will they say who data was shared with until ‘later this year’…
Ben Goldacre: The NHS plans to share data can save lives, but must be done right. Guardian: 22/02/2014
Summary of my views about care.data by Professor Sir Brian Jarman. Technical, but clear and critical analysis of confidentiality issues.
Paul Bernal. Care.data and the community. Excellent blog about other potential misuses of care.data. 23/02/2014
Flying Blind – Assumptions, metaphors and an alternative way of looking at the care.data scheme. – NHS staff are drowning in data, they need time with patients and time for dialogue. David Gilbert. Centre for Patient Leadership
Care Data. Why are Scotland and Wales doing it differently? Margaret McCartney British Medical Journal.
Your bits in their hands. Kings Fund Health Economist John Appleby on lessons from hospital data sharing.
NHS England’s director of patients and information Tim Kelsey says ‘pseudonymisation at source’ technology is not ready for use on the care.data programme. E-Health insider. 21.02.2014
Dr Neil Bhatia. GP website about care.data
Allyson Pollock: Why the public should opt in to care.data and out of data privatisation.
Alcohol unit calculator.