Sunday, 9 February 2014

Roll up! Roll up! Medical records for sale!


The government's care.data scheme - due to start in March 2014 - aims to collect data from the confidential medical records of every man, woman and child in England and sell it - for a price - to a rag-tag bunch of middle managers, pharmaceutical labs and rapacious insurance companies who, we are assured, have nothing but our best interests at heart.


The Health & Socal Care Information Centre (HSCIC) are administering the scheme with a little help from those lovable rogues, ATOS.

Every household in England should have received a leaflet which attempts to explain the benefits of the scheme, but manages to miss out one or two tiny details. HSCIC promises, for example, that patients have a "choice" about whether to take part, or not:

"If you are not happy for your information to be shared you do not need to do anything... And you can change your mind at any time..."

One group who disagree with this claim are, errr, HSCIC - who have confirmed that once medical data is uploaded to the database, it can never be deleted.

Another curious claim is that the uploaded data will be secure and anonymous. This is hysterical given how easy it seems to be to hack NHS computers

The anonymity claim is equally ridiculous: just ask anyone who's ever taken a Computing for Dummies class at their local library. This is what David Davis MP had to say about it:

"I have had my nose broken five times. Once you know that, I am probably in a group of 100 people in England. Then you figure out when I had my diptheria jab, usually done at birth, and bang you got me. Let me be clear: people can be identified from this data..."

The police will also be able to apply to read about your darkest medical secrets - with a much better chance of success, now that the records are held in a central computer - in fact, just about the only people who won't be able to access the HSCIC data are doctors and nurses!

Opting out of the scheme is quick and easy, but you only have a few more days in which to do it. In the mean time, anyone who feels misled by the leaflet that popped through their letterbox ought to complain to the ASA - hell, you can go ahead and copy mine!

I'm writing to complain about an unaddressed leaflet, "Better information means better care", sent to every address in England (including mine) by the Health & Social Care Information Centre (HSCIC) and NHS England.

The leaflet promotes the government's 'care.data' scheme. I'm concerned that the leaflet makes a number of misleading claims.

1. "Details that could identify you will be removed before your information is made available to others, such as those planning NHS services and approved researchers... We sometimes release confidential information to approved researchers..."

2. "Information that we publish will never identify a particular person..."

3. The Information Commissoner's Office have stated:

"However, in some circumstances it can be difficult to establish the risk of re-identification, particularly where complex statistical methods might be used to match various pieces of anonymised data. This can be a particular vulnerability where pseudonymised data sets are concerned, because even though pseudonymised data does not
identify an individual... the possibility of linking several anonymised datasets to the same individual can be a precursor to identification..."

http://ico.org.uk/for_organisations/guidance_index/~/media/documents/library/Data_Protection/Practical_application/anonymisation-codev2.pdf (p21)

4. David Davis MP is quoted in The Guardian:

"I have had my nose broken five times. Once you know that, I am probably in a group of 100 people in England. Then you figure out when I had my diptheria jab, usually done at birth, and bang you got me. Let me be clear: people can be identified from this data..."

http://www.theguardian.com/society/2014/feb/06/police-backdoor-access-nhs-health-records

5. I challenge whether claims 1 & 2 are misleading because

(i) The data can apparently be used to uniquely identity patients by cross-referencing it with other data sets, such as those containing details provided to insurance companies by customers when purchasing a policy

(ii) Section 5 of the Health Service (Control of Patient Information) Regulations 2002, authorised by Section 251, allows the release of identifiable information from the HSCIC data for non-research purposes

(iii) The claims make no mention of non-research organisations who can apply to access the data, such as insurance companies

(iv) The claims make no mention of the police who can access the data under Secton 29(3) of the Data Protection Act 1988

6. "We will only use the minimum information needed to improve patient care and services..."

7. I challenge whether this claim is misleading, because the existing Clinice Practice Research Datalink (CPRD) scheme is already able to "maximise the way anonymised NHS clinical data can be linked to enable many types of observational research and deliver research outputs that are beneficial to improving and safeguarding public health" using much less information than the "minimum information" collected by the care.data scheme.

http://www.cprd.com/intro.asp

8. ""If you are not happy for your information to be shared you do not need to do anything... And you can change your mind at any time..."

9. HSCIC's response to a recent Freedom of Information request states:

"The HSCIC will not anonymise data retrospectively where an objection is registered
with a GP practice following an extraction of data... Where patients have registered an objection to the disclosure of their personal confidential data from GP practices, this will be respected in all but exceptional circumstances..."

https://www.whatdotheyknow.com/request/192492/response/480333/attach/2/NIC%20242402%20P9S4R%20FINAL%20FOI%20Response.pdf

10. Therefore, I challenge whether the claim that patients "can change [their] mind at any time" is misleading, since HSCIC themselves have confirmed that this is not the case.

11. "This leaflet contains important information about your health records... You have a choice..."

12. In 2005, a comparable scheme took place in Hampshire. Affected patients were contacted by unaddressed leaflets. In 2007, the Parliamentary Health Select Committee heard:

"We have learnt from what Hampshire did, because we believe that it did not go to every person who needed to learn about it, and I have learnt more about the junk mail rule than I ever want to know, but it exists and you need to send to every addressed adult in order for it not to get thrown away..."

http://www.publications.parliament.uk/pa/cm200607/cmselect/cmhealth/c422-i/c42202.htm

13. I challenge whether the claim "You have a choice" is misleading, since many patients (especially those not living alone) will not have seen the leaflet.

14. I can confirm that I am not employed by anyone in the medical (or related) industries, nor have I ever been a member of a political party, nor have I ever been a member of any charity or other campaign group which lobbies on medical issues.

Saturday, 12 October 2013

The Elusive "Registered Chinese Doctors" of Hitchin


Hitchin - the sleepy Hertfordshire town so amiable, that even the ducks walk around with smiles on their faces - is suffering from a miniature plague of quacks who think they're real doctors.

Tucked into one corner of the town's attractive market square can be found the Chinese medicine shop pictured below. 

(Image credit - own photo)

The shop window rashly claims that Traditional Chinese Medicine - a practice invented as recently as the 1950s to stop the peasants asking for real medicines - can "treat" all manner of health problems. 

Shop displays like this aren't covered by the UK's advertising codes but, luckily, the clinic has placed some handy leaflets just beside the front door.

(Image credit- scan of the leaflet)

According to the clinic, these are just "some of the problems and illnesses for which acupuncture and Chinese herbs have proven their effectiveness":

"Can Chinese medicine help you? Listed below are some of the problems and illnesses for which acupuncture and Chinese herbs have proven their effectiveness: Dermatological conditions: Eczema - Vitiligo - Psoriasis - Acne - Herpes (shingles) - Lupus - Pruritus - Hives (urticaria) - Athlete's foot - Dermatitis - Fungal infection - Hair loss... Internal disorders: Asthma - Bronchitis - Headache - Migraine - Dizziness - M.E. - Gastritis - Colitis - I.B.S. - Diarrhoea - Constipation - Cystitis - Indigestion - Ulcers - Colds and flu - Haemorrhoids - High blood pressure - M.S. ... Musculoskeletal and neurological conditions: Arthritis - Facial pain - Neuralgia - Stroke - Carpal tunnel syndrome - Lumbargo - Sciatica - Back pain - Sports injuries - Rheumatism - Tennis elbow - Stiff neck - Frozen shoulder... Genito-urinary and reproductive disorders: Menopause - P.M.S. - Period pain - Leucorrhoea - Irregular periods - Fibroids - Morning sickness - Endometriosis - Infertility - Prostate conditions - Impotence - Premature ejaculation... Mental and emotional conditions: Anxiety - Depression - Stress - Panic attacks - Insomnia - Fatigue... Ear, nose & throat conditions: Hay fever - Sinusitis - Sore throat - Bad breath - Tinnitus - Ear infections... Others: Alcoholism - Smoking - Drug addiction - Weight problems - Allergic disorders - Coping with cancer..."

(Image credit - scan of the leaflet)

Unusually, the clinic doesn't mention the names of the "doctors" it employs, but we're left in no doubts that they must be genuine, the real deal, and not at all bogus.

"The skill of the Chinese doctor lies in identifying the underlying pattern of the illness and selecting and appropriate cure..."

"After carrying out a thorough diagnosis, the doctor will prescribe a combination of herbs..."

"As treatment continues, the doctor will closely monitor your progress through regular consultations, altering the prescription and regulating the dosage accordingly."

The General Medical Council's register doesn't seem to know anything about the "Registered Chinese Doctor" employed at this "clinic". As always, it'll be interesting to see what the advertisers have to say for themselves.

ASA complaint follows!

"I'm writing to complain about a leaflet I picked up outside the "Chinese Medicine Clinic" in Hitchin. (The leaflet was in a box, attached to the clinic's front window, facing a main pedestrian thoroughfare - see enclosed photo.)

The leaflet promotes Traditional Chinese Medicine (TCM) treatments.

1. The leaflet claims:

"Can Chinese medicine help you? Listed below are some of the problems and illnesses for which acupuncture and Chinese herbs have proven their effectiveness: Dermatological conditions: Eczema - Vitiligo - Psoriasis - Acne - Herpes (shingles) - Lupus - Pruritus - Hives (urticaria) - Athlete's foot - Dermatitis - Fungal infection - Hair loss... Internal disorders: Asthma - Bronchitis - Headache - Migraine - Dizziness - M.E. - Gastritis - Colitis - I.B.S. - Diarrhoea - Constipation - Cystitis - Indigestion - Ulcers - Colds and flu - Haemorrhoids - High blood pressure - M.S. ... Musculoskeletal and neurological conditions: Arthritis - Facial pain - Neuralgia - Stroke - Carpal tunnel syndrome - Lumbargo - Sciatica - Back pain - Sports injuries - Rheumatism - Tennis elbow - Stiff neck - Frozen shoulder... Genito-urinary and reproductive disorders: Menopause - P.M.S. - Period pain - Leucorrhoea - Irregular periods - Fibroids - Morning sickness - Endometriosis - Infertility - Prostate conditions - Impotence - Premature ejaculation... Mental and emotional conditions: Anxiety - Depression - Stress - Panic attacks - Insomnia - Fatigue... Ear, nose & throat conditions: Hay fever - Sinusitis - Sore throat - Bad breath - Tinnitus - Ear infections... Others: Alcoholism - Smoking - Drug addiction - Weight problems - Allergic disorders - Coping with cancer..."

2. I'd like to challenge whether the advertiser can substantiate any of these health claims, and I'd also like to challenge whether the claims might discourage essential treatment.

3. The leaflet makes a number of claims for the efficacy of Chinese medicine:

(i) "Chinese medicine emphasises a holistic approach to the curing of disease..."
(ii) "The skill of the Chinese doctor lies in... selecting an appropriate cure..."
(iii) "Both these treatment methods can be used to... correct disharmony between the organs to remove the root cause of the disease..."
(iv) "Some patients will experience the benefits of acupuncture treatment immediately; others, especially those suffering from chronic diseases, may need a longer course of treatment..."
(v) "PAIN CLINIC: INSTANT PAIN RELIEF. - All types of pain treated..."

4. I'd like to challenge whether these efficacy claims can be substantiated.

5. The leaflet makes a number of references to "doctors":

(i) "The skill of the Chinese doctor lies in identifying the underlying pattern of the illness and selecting and appropriate cure..."
(ii) "The [acupuncture] points chosen depend on the doctor's diagnosis of the patient's condition..."
(iii) "After carrying out a thorough diagnosis, the doctor will prescribe a combination of herbs..."
(iv) "As treatment continues, the doctor will closely monitor your progress through regular consultations, altering the prescription and regulating the dosage accordingly."
(v) "Our practitioners have worked for many years at leading teaching and research hospitals in China. Trained in both Western and Chinese medicine and with degrees from major TCM universities, they are also registered with recognised professional Chinese Medicine associations in the UK. With a wide range of clinical experience to draw on, they... have gained the trust and gratitude of their patients by achieving and maintaining satisfactory results in treating a wide variety of illnesses."

6. I have checked the General Medical Council's register, but found no matches; so I'd like to challenge whether these references to "doctors" are misleading."