This is very confusing! I went to my GP practice and indicated that I
wished to opt out. I was given a form to fill in: "Care Data Patient
Choice Form". The final page of the original leaflet I received vai
my letter box states:

  "If your do not want information that identifies you to be shared
  outside your GP practice, please ask the practice to make a note
  of this in your medical records. This note will prevent your
  confidential information being used other than in special circumstances.

  Information from other places where you receive care, such as
  hospitals and community services, is collected nationally. You
  should also let your GP practice know if you want to prevent the
  information from those places being shared."

On the form I was given it states:

  "If you want to object to the extraction of your Personal Confidential
  Data (PCD) from leaving the practice [sic] (or from any other health
  organisation) please complete the reply slip below and return it to
  Reception. We will then amend your medical record accordingly."

And the "reply slip" has two items:

  Make Your Choice(s) below:

  1. I do not wish information that identifies me to be shared outside
  of my GP practice. (Code XaZ89) [tick-box]

  2. I do not want information that identifies me to be used by other
  healthcare organisations such as Hospitals, Community Services,
  and research projects. (This will, in the future, prevent any of
  your Personal Confidential Data leaving the Health and Social Care
  Information Centre (SCIC). (Code XaaVL) [tick-box]
  [No, I have not left out a ")" -- there isn't one on the form!]

Item 1 is consistent with the first paragraph quoted above from
the "junk mail" leaflet.

However, Item 2 as worded seems to be inconsistent with the second
paragraph quoted above from the leaflet. And it also implies that
my GP practice information could not be shared with a hospitel to
which my GP referred me!!

I don't know whether this is yet another example of bureaucratic
incoherence, or whether it is, perhaps, deliberately confusing.

The "opt-out" wording in the form from my GP practice is quite
different from the wording of the opt-out letter available from

  http://medconfidential.org/how-to-opt-out/
  http://medconfidential.org/how-to-opt-out/#download

as referenced by Ursula Huws. However, medconfidential is clearly
not a Government agency, so would not be expected to participate
in incoherence of confusion. However, whether receipt of their
letter by your GP would be considered a valid trigger for opting
out, or whether it would simply be ignored as not being in the
official format, is quite unclear!

Any comments?

Best wishes to all,
Ted.

On 15-Jan-2014 13:24:43 Kornbrot, Diana wrote:
> It seems to me that this is a forward looking initiative form NHS and I
> certainly would not opt out
> 
> BENEFITS
> 1. Individual benefit
> If I have an accident away from home or even near home out of hours,
> I want the doctors to know ALL about my history. Supposedly opting out
> will not change that, but I'D like to be sure.
> 2. Societal Benefit
> We can all benefit from research carried out by universities, research
> institutes and charities.
> A. this data will be pseudanonymised, which is critical for discovering
> if there are sub-groups of people who might be harmed by drug that is
> beneficial to most, for example
> B. all research using nhs data has to be approved by an NHS Research
> Ethics Committee
> WORRIES
> Could get into wrong hands, e.g. Insurance companies, employers.
> Solution. Make unauthorised access or use a criminal offence and a
> civil offence with financial penalise outwaying benefits
> 
> In any event, if you think your personal data is secure on your GP's
> computer, think again. ITs not safe anywhere. The thought of people who
> are contributors to linked in, Facebook, and using open email etc worrying
> about and option out of the NHS database has its amusing side
> 
> Which is why IMHO penalties for misuse is the key to individual protection
> 
> Best
> Diana
> 
> ________________________________________
> Professor Diana Kornbrot
> email: : [log in to unmask]
> web:    http://dianakornbrot.wordpress.com/
>             http://go.herts.ac.uk/diana_kornbrot
> Work
> Department of Psychology
> School of Life and Medical Sciences
> University of Hertfordshire
> College Lane, Hatfield, Hertfordshire AL10 9AB, UK
> voice:   +44 (0) 170 728 4626
> Home
> 19 Elmhurst Avenue
> London N2 0LT, UK
> voice:   +44 (0) 208  444 2081
> mobile: +44 (0) 7403 18 16 12
> 
> -----Original Message-----
> From: Ursula Huws
> <[log in to unmask]<mailto:[log in to unmask]>
>>
> Reply-To: Ursula Huws
> <[log in to unmask]<mailto:[log in to unmask]>
>>
> Date: Tuesday, 14 January 2014 19:20
> To: "[log in to unmask]<mailto:[log in to unmask]>"
> <[log in to unmask]<mailto:[log in to unmask]>>
> Subject: FW: Your patient records;
> 
> Forwarding fyi
> 
> You may have just had an innocuous looking white green and blue leaflet
> through the door which tells you that the NHS would like to 'share' your
> medical records with researchers and selected other parties. It is not
> addressed to you, is not sent by your GP and looks like junk mail.
> 
> It all sounds as if it is no more than the sharing of perhaps GP records with
> your consultants, but it goes way beyond this. The government plans to use
> only semi-anonymised data uploaded from our GP records to pass on (and sell)
> to charities, researchers and commercial companies. Unless you opt out, you
> are deemed to be in, though no opt out letter has been included on the
> leaflet and you are told to discuss with your doctor if you have concerns. 
> There is a simpler way which I urge you to take: go to http://medconfidential.
> org which tells you more about this scheme and gives you an opt-out letter +
> form to download which you can simply fill in and post to your GP.   Data
> will start to be uploaded from GP data in March and once it has been
> uploaded, your opt-out rights have ended.

-------------------------------------------------
E-Mail: (Ted Harding) <[log in to unmask]>
Date: 30-Jan-2014  Time: 00:20:23
This message was sent by XFMail
-------------------------------------------------

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