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James Rees
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Your medical records

Post by James Rees on Mon 17 Feb 2014, 10:12 am


In just two weeks, the personal medical records of everyone in England will start being sent to a central database - Care.data - to be used by the NHS to improve its services. [1]

If it’s done right, Care.data could be used to make our NHS even better.

But there’s a catch: private companies will be able to buy access to our data too - private companies like Serco or big pharmaceutical companies who would love to see our NHS privatised and run entirely for profit. [2]

It’s been all over the papers and causing huge concern. Hundreds of 38 Degrees members have suggested that we work together to fix the plans. [3] But so far the organisation running Care.data - NHS England - is pushing ahead despite public opposition. Maybe they’re hoping to weather the storm.

We can turn up the pressure and force them to listen. We all have the right to opt out of the scheme. If we organise hundreds of thousands of us to opt out, we’ll show NHS England they need to change the rules and stop private companies having access to our data.

We can make it happen. But we don't have much time. Care.data is due to launch at the beginning of March. This week the office team has been putting in place a system that could allow us to launch a huge mass opt-out. Opting out will only up the pressure if enough of us are behind it. So will you answer this simple question now: do you think we should organise a mass opt-out from Care.data to put pressure on NHS England to fix the scheme?

YES - WE SHOULD             https://secure.38degrees.org.uk/page/s/nhs-opt-out-yes?

NO - WE SHOULDN'T         https://secure.38degrees.org.uk/page/s/nhs-opt-out-no?


Despite few people understanding the plans - we’ve all been automatically opted in to the scheme. [4] Lots of 38 Degrees members have been in touch with concerns about what will happen to our medical records once they’re on Care.data.

NHS England, the organisation that oversees the NHS in England, insists our records will be anonymised and secure. But many GPs are withholding their own records because of concerns about how they could be used. [5]

38 Degrees members have been speaking out against Care.data in droves:

“I work in the NHS and have opted out. I don't want anyone else to see my confidential data.”  - Sarah

“I am happy for my anonymised data to be used for the benefit of improving healthcare in our population. Problem is, I do not believe the current security measures are sufficient to protect my personal data.”  - Alan

“While I can see the benefits of sharing data between hospitals and GPs. I don't think it is appropriate or ethical to sell confidential information to third parties. That is despicable”  - Sandra

Opting out now doesn’t mean you have to stay opted-out. Once the scheme is fixed anyone can contact their GP again and opt back in.

So, what do you think? Should we stage a mass opt-out from Care.data?


YES - WE SHOULD                  -  https://secure.38degrees.org.uk/page/s/nhs-opt-out-yes?

NO - WE SHOULDN'T              -  https://secure.38degrees.org.uk/page/s/nhs-opt-out-no?


Thanks for being involved,

James, Maddy, Rebecca and the 38 Degrees team


NOTES
[1&2]
See this article from Wired which outlines what Care.data is and why many people are concerned: http://www.wired.co.uk/news/archive/2014-02/07/a-simple-guide-to-care-data
[3] See the quotes from members further down the email for a selection.
[4] Pulse: Two-thirds of public yet to receive care.data information leaflet http://www.pulsetoday.co.uk/your-practice/practice-topics/it/two-thirds-of-public-yet-to-receive-caredata-information-leaflet/20005874.article#.UwC4Gvl_tWU
[5] BBC: GPs voice fears over giant patient records database http://www.bbc.co.uk/news/health-26151458
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Re: Your medical records

Post by bimbow on Tue 18 Feb 2014, 10:37 pm

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Re: Your medical records

Post by Kitkat on Wed 19 Feb 2014, 6:52 pm


Only because there has been such a lot of controversy and discontent expressed from all areas (including GPs).
Well done to all those who got together to raise the various campaigns, protests and delving questioning regarding this.

Of course, it's simply "delay" they're talking about here, not a turnaround decision, but that in itself is a pretty good place to have reached.
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Hospital records of all NHS patients sold to insurers

Post by Kitkat on Mon 03 Mar 2014, 1:13 pm

Need to keep up to date with the situation here, changes all the time, and those changes & decisions happen so quickly - and with each reported change, an explanation for the previous one becomes apparent through the smoke.  

Hospital records of all NHS patients sold to insurers

The medical records of every NHS hospital patient in the country have been sold for insurance purposes, The Telegraph can reveal.

The disclosure comes days after controversial plans to extract patient data from GP files were put on hold, amid concerns over the scheme.


from here (23.02.14):  http://www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-of-all-NHS-patients-sold-to-insurers.html


AND ....

Patient records should not have been sold, NHS admits (24.02.14)

The records should not have been sold to the insurance industry, says the Health and Social Care Information Centre which has taken over responsibility for NHS data


http://www.telegraph.co.uk/health/nhs/10659147/Patient-records-should-not-have-been-sold-NHS-admits.html

er ... decisions and deals such as the above don't just happen in a day or two.  Much foreward thinking, preparation, forecasting and decision-making goes into such proposals.  
Do we take it that the transferral of these medical records to insurers - was .... a *mistake* on their part?!!   surprised   I don't think so.  I think they knew exactly what they were doing - and had already prepared the marketing cover-up blurb - should it become 'leaked' to the press/general public.

And ... the wheeling and dealing [covertly from the Top Tables] will continue.


HSCIC Plan for 2013/14:  
http://www.hscic.gov.uk/media/11860/HSCIC-business-plan-2013-14/pdf/80305_HSCIC_Business_plan_V1.0.pdf

The Health and Social Care Information Centre (HSCIC) is a new delivery organisation with important statutory duties. We are one of a number of Executive Non-Departmental Public Bodies (ENDPBs) which have been established as independent organisations as part of the strategic reform programme

"This is an important year for the formation of the HSCIC. We have the opportunity to make significant improvements to delivery of key national informatics and information services, and to establish itself as a strategic partner in the delivery of national policy and strategies. We will build on the successes of the past, while recognising the need to change to deliver a better care service that provides improved care services to the public."
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NHS England scraps controversial Care.data programme

Post by Kitkat on Wed 11 Jan 2017, 10:45 am

The government decides to shut down its troubled Care.data programme as Fiona Caldicott launches new opt-out model for the sharing of patient data


NHS England has pulled the plug on the controversial Care.data project, after the national data guardian for health and care Fiona Caldicott asked the government to consider the future of the programme.

Health and life sciences minister George Freeman said in light of Caldicott’s review, “NHS England has taken the decision to close the Care.data programme.”

The programme, which aimed to extract anonymised patient data from GPs to a central database held by the Health and Social Care Information Centre (HSCIC), has been controversial since it first began.

In 2013, it was paused after accusations that the programme was being pushed through without explaining the implications for highly sensitive patient records.

This was followed by a disastrous education campaign, consisting of leaflets being posted through letterboxes that failed to include any information on the risks of the data being shared.  

In February 2014, the programme was put on hold for six months following widespread criticism. It was due to start again that autumn, with 500 GP practices selected as pilot sites, but was put on hold yet again.

In June 2015, the programme began again, with four areas chosen as pathfinders to trial the project. However, the programme was again paused in September 2015, when health secretary Jeremy Hunt asked Caldicott to develop a model for consent and opt out.

Recommendations ‘go beyond’ Care.data


The review, which was published on 6 July 2016, recommends an eight-point consent model for patient data sharing, with separate opt-outs for patient data used for research and for data used for running the health service.

Although the review was not asked to look at Care.data in particular, the pathfinders have been “involved in shaping and testing the proposed consent/opt-out model,” the report said.  

“What we’re recommending goes beyond what Care.data did because we’re going beyond the information that goes from GPs anywhere outside the practice for other purposes. We’re talking about the movement of data across the whole system in the patients’ and the public’s interest,” said Caldicott.

George Freeman said the government remains committed “to realising the benefits of sharing information”.

“Therefore, this work will now be taken forward by the National Information Board, in close collaboration with the primary care community, to retain public confidence and to drive better care for patients,” he said.

Eight-point consent model

In her report, Caldicott recommends that the proposals for an eight-point consent model now go out for a public consultation. She believes it is important to include both the public and professionals in the further development and uptake of the consent model.




Source: http://www.computerweekly.com/news/450299728/Caldicott-review-recommends-eight-point-consent-model-for-patient-data-sharing

    Current date/time is Tue 19 Sep 2017, 6:01 pm