Could we please distinguish two separate issues here. [1] I don't want my personal confidential medical records mined [licitly or illicitly] by profit seekers to identify me to sell me things or exclude me as too risky etc etc; [2] I want appropriately anonymised data of this kind to be open access. I may not be alone in seeing this distinction which seems to run through the thread. What should I do now -- tell my GP or do nothing?
John VW.
------------------------------------------------------------
From Professor John Veit-Wilson
Newcastle University GPS -- Sociology
Newcastle upon Tyne NE1 7RU, England.
email [log in to unmask]
Telephone 0044[0]191-208-7498.
www.staff.ncl.ac.uk/j.veit-wilson/
-----Original Message-----
From: email list for Radical Statistics [mailto:[log in to unmask]] On Behalf Of Paul Bivand
Sent: 30 January 2014 10:39
To: [log in to unmask]
Subject: Re: Your patient records;
Re the commercial issue - I'm in favour of the Open Data type release - partly because what is commercial or not is really hard to work out.
Universities and Colleges are regarded by ONS as private sector institutions, and we have had the stupid precedent that research done by private sector institutions for Government under research contracts was commercial (you'll find some remnants of that in ESRC Data Archive terms).
The same applies to non-profit researchers and charities - they get caught on the 'commercial' terms.
The issue then becomes whether the researchers are bound to publish the research they do using the open data - which as far as Big Pharma is concerned may be a Ben Goldacre type issue.
Paul
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-----Original Message-----
From: email list for Radical Statistics [mailto:[log in to unmask]] On Behalf Of Macfarlane, Alison
Sent: 30 January 2014 10:31
To: [log in to unmask]
Subject: Re: Your patient records;
Very sorry to hear that Radstats has joined the Daily Mail on the individual opt out band wagon. You are playing into the hands of the private sector by ensuring that we have crap national statistics to cover up its activities. What we need is a concerted campaign against letting the private sector have the data for commercial purposes. Sounds like Radstats has gone into an anti-statistics phase again.
Alison
-----Original Message-----
From: Ted Harding [mailto:[log in to unmask]]
Sent: 30 January 2014 00:20
To: [log in to unmask]
Subject: Re: Your patient records;
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:ursulahuws@ANALYTICARESEARC
> H.CO.UK>
>>
> Reply-To: Ursula Huws
> <[log in to unmask]<mailto:ursulahuws@ANALYTICARESEARC
> H.CO.UK>
>>
> 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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