Conservative MP opts-out of SCR

Tags: GP SCR Summary Care Record

05 Feb 2008

A Conservative MP has opted out of the Summary Care Record and is encouraging his constituents to do the same.

Peter Luff, MP for mid-Worcestershire, wrote to his GP requesting that details from his medical records are not uploaded on to the Spine.

Luff told EHI Primary Care that he acted after hearing about the Spine and SCR from Worcestershire Local Medical Committee (LMC).

He said: “The LMC has been highlighting concerns about it and after the recent episodes of data loss by the government in the last three months I have grave reservations about how medical records will be kept confidential. I discussed it with my GP before I wrote to him and he was very supportive”

Luff said he had not been directly contacted by constituents with concerns about the Spine but that there was a high profile campaign in Worcestershire against identity cards and some of the people involved in that campaign had also made it clear they would want to opt-out of the SCR.

Luff added: “I’ve done this not because I have anything to hide, but on principle. I think the collection of so much sensitive information in one place is plain daft and open to massive abuse. It is a fundamental attack on our right to privacy.”

The MP said he accepted that some people would gain from wider availability of access to medical information but claimed it would be a small minority and that the potential benefits of the scheme did not justify the cost.

He told EHI Primary Care: “You might have someone who had a termination early in life and does not want that information to be shared or all kinds of others situations involving people’s privacy. Patients are OK about information being held in their own GP’s record but they are not OK about it being held centrally.’

Fiona Barr

Reader's Comments

RIPAing yarns

05 Feb 08 18:02

Peter Luff's gesture cannot simply be dismissed as paranoia or political opportunism. Will hundreds of Regulation of Investigatory Powers Act (2000) 'intercepts' per day be requested against the National Care Records Service?

"the overall number of requests for communications data ... totalled 253,557 during the .. period [11 April 2006 to 31 December 2006.]" from Report of the Interception of Communications Commissioner for 2006

http://www.official-documents.gov.uk/document/hc0708/hc02/0252/0252.asp

RIPA cites no exemption for medical correspondence or records. Hundreds of agencies are empowered under the Act to request "intercepts" and justifications are easy to concoct:

>> Reasons for accessing retained data

(2) It is necessary on grounds falling within this subsection to obtain communications data if it is necessary—

(a) in the interests of national security;

(b) for the purpose of preventing or detecting crime or of preventing disorder;

(d) in the interests of public safety;

(e) for the purpose of protecting public health;

(f) for the purpose of assessing or collecting any tax, duty, levy or other imposition, contribution or charge payable to a government department;<< http://www.opsi.gov.uk/acts/acts2000/ukpga_20000023_en_1

A GP going public over requests to access medical records under his / her control would be "tipping off" as described under the Act and open to prosecution. However the threat of adverse publicity in such cases one hopes will mitigate against large volumes of frivolous requests.

Frankly I find that feeble enough reassurance - but what restraints will protect GP Summary Records or the pseudo-anonymised data in SUS?

Does it make any difference....

06 Feb 08 06:02

Personally i want, and expect, the NHS to be able to share my medical records to those responsible for my healthcare. Whether they are on 1 big database or held in GP practice computer makes no difference to me.

And i wonder what makes a GP system any safer than any other?

Can we have a BIG OPT IN website please where patients can express their concern that their records might not be shared and kept locked away in several different NHS computer systems and my healthcare providers never knowing these other records exist?

Worcestershire sources

06 Feb 08 14:02

I dare say those people on the Worcestershire Local Medical Committee that Peter Luff spoke to gave him an objective appraisal of the risks and benefits of CRS.

It's strange that he doesn't cite concerns about disclosure under RIPA as his justification for opting out of CRS - just a lot of vague and ill-informed stuff about data loss and rights to privacy. I'd say the first poster hit the nail of the head: 'paranoia and political opportunism'. With a dash of scaremongering on the side.

The fact that he's 'not been directly contacted by constituents with concerns about the Spine' speaks volumes though.

Constituents

06 Feb 08 14:02

Why would he be contacted by constituents?

He is not responsible for opting them out - they can easily do it themselves.

Opt in

06 Feb 08 16:02

"Can we have a BIG OPT IN website please..."

Feel free to set one up.....I'm sure it will be a roaring success.

Patients can always ask their GP to add the code "Consent given for upload to national shared electronic record - 93C2" to their notes.

Yes to a BIG OPT IN!

07 Feb 08 10:02

I continue to be amazed (and puzzled) by the seemingly passive acceptance by CfH of the growing body of ambiguous, misleading or simply wrong information about the SCR and the PDS that is gaining widespread public credence.

If these sometimes wild and inaccurate statements are not actively refuted now then when we start the general rollout of the SCR a significant number of people will be negatively prejudiced against it on the basis of the misinformation being posted on various websites and reported in the media.

In my experience, once patients and patient groups understand the facts about the SCR then they have a very different reaction to what they did before.

CfH

07 Feb 08 10:02

I know how: this government could issue a press release stating - unequivocally - "Your data is safe in our hands!"

Ah, but.....

Big opt in

07 Feb 08 14:02

Patients OPTING IN to the SCR is EXACTLY what the BMA has been asking for all along. Their explicit, informed consent before their data is uploaded.

RE: Yes to a BIG OPT IN

stressfreedave@hotmail.com

07 Feb 08 18:02

You can assure anyone that anything is safe and is in their best interest, that does not mean it is. Simply getting people to think their data is 'secure' or 'private' is no substitute for making it secure or private. I am one of those people that points out facts about the SCR and access to it. The things I say are facts and can even back them up by emails by, amoung others, CfH managers.

What CfH and PCTs continualy do is withhold information about access to the information or say it in such a way it can not be clearly understood (in any other business, that would be ilegal and they would get taken to court for it).

Data is already shared within the NHS. For example if you are sent to see a consultant, then your data is shared with the management referal centre (if the GP uses one) and the consultant (if the referal centre allows you to see the consultant). CfH have pointed out that this is currently not a problem. That means they are suggesting spending £20 billion on making info available to A&E and out of hour centres (which only exist because the goverment fixed the system and refused to spend the money at GP practices). This info can be carried by patients and even with the national system, they should still carry it. The SCR record can include things like men being impetent and woman had an abortion within the last 5 months (Dorset PCT has confirmed this) and that info would be available to SUS and reception staff to name only 2. Nobody knows why a receptionists needs to know that info to make an appointment, but they are to be allowed access. Anyone want to explain why?

Opt in ... Opt out ... what to?

10 Feb 08 23:02

http://tinyurl.com/yv7flg

I feel it is high time the DoH clarified exactly what will be delivered in terms of confidentiality measures re: Summary Care Record. As this EHI report (ref above) into the findings of the Health Select Committee into the Electronic Health Record from last September points out, the Health Select committe were extremely uncomfortable taking at face value assurances that the much vaunted sealed envelope technology was not even designed at the time the report was written (according to their report).

With the SCR pilot underway in the North West, has that capability been tried and tested? -- we deserve to know EXACTLY what it is that we will be asked to opt in to.

Recommended opt-out yay...

15 Feb 08 17:02

I wish my GP would recommend in writing to me that I should opt out of the Summary Care Record.

I'd do it too, then when I get inappropriate treatment in the future because of a lack of information about my condition (read the NAO reports on the regularity of this type of incident) I'll be able to sue for millions like the people who were given bad advice about endowment mortgages did!

Maybe the Medical Defence Unoinss need to think about having an exemption clause in their policies for GPs giving this advice :)