So researchers would have to get data from every general practice in the country. This would be a mammoth task and wholly impracticable.
Alison
-----Original Message-----
From: Jody Aberdein [mailto:[log in to unmask]]
Sent: 30 January 2014 12:10
To: Macfarlane, Alison
Cc: [log in to unmask]
Subject: Re: Your patient records;
Surely preferable then to have the GP practice pull down the secondary and tertiary data: perhaps via GP located standard software. Then researchers can acccess locally pseudonymised data, randomly sampled, pool if necessary across practices for rare conditions. That way no one body holds all the info on all the people and access is granted on a per-project basis where power calc for each project done as needed...
Just thinking out loud. No nothing of big data management systems and info security.
J
On 30/01/2014, Macfarlane, Alison <[log in to unmask]> wrote:
> The reason for doing the pseudonymisation at HSCIC is to link together
> hospital and primary care records and possibly other redcords for the
> same person and then pseudonymise after that.
>
> Some national statistics and research may relate to rare conditions.
> How would you calculate sample size to meet every eventuality? In any
> case, national statistics are based on 100%.
>
> Alison
>
> -----Original Message-----
> From: Jody Aberdein [mailto:[log in to unmask]]
> Sent: 30 January 2014 11:48
> To: Macfarlane, Alison
> Cc: [log in to unmask]
> Subject: Re: Your patient records;
>
> If it is just about research, service design, provision etc. then I
> have two
> questons:
>
> 1) why is the psudonymisation not at the level of GP practices?
>
> 2) why must there be complete data acquisition as opposed to random
> sampling?
>
> J
>
> On 30/01/2014, Macfarlane, Alison <[log in to unmask]> wrote:
>> 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@ANALYTICARESEA
>>> R
>>> C
>>> H.CO.UK>
>>>>
>>> Reply-To: Ursula Huws
>>> <[log in to unmask]<mailto:ursulahuws@ANALYTICARESEA
>>> R
>>> C
>>> 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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