Opting out of NHS health data sale

(125 Posts)
OddBoots Sun 18-Aug-13 20:44:17

I wasn't sure what section to put this so I hope here is okay.

Following the news that there are government plans to sell identifiable medical information I'm really not sure what to think. I like the idea of it being easier for research to be undertaken but I'm not sure this is the way to go about it.

There's a site here with information about how to opt out and I'm thinking of opting out until it's a bit clearer what is going to happen to the information.

Mrsdavidcaruso Wed 25-Sep-13 21:36:27

sorry link not working

Mrsdavidcaruso Wed 25-Sep-13 21:44:07

HSJ has learned the Information Commissioner’s Office met with NHS England last Thursday to discuss legal concerns amid mounting general practice opposition to the care.data project, particularly about the speed with which it was being implemented.

The ICO said it was concerned GPs were being given insufficient time to carry out a legal duty to inform patients about the programme, which will link patient data across different care settings, and allow them to opt out if they wish.

In an email seen by HSJ, the Health and Social Care Information Centre - which will run the database - wrote to GP “early adopter” practices on 29 August warning they had “approximately eight weeks” before it began extracting data.

However, NHS England has now agreed data will not be extracted until the ICO has approved its proposed timescales and it has also agreed to run a national awareness campaign.

One expert said it was “very unlikely” NHS England would be able to complete this process and start the extractions in line with the initial mid October timeframe indicated by the 29 August email.

It is understood the information centre is reviewing data collection methods, potentially further exacerbating any delay.

NHS England’s business plan for 2013-14 – 2015-16 said: “75 per cent of GP practices will be providing the full extract to care.data by September 2013.”

ICO group manager of public services Dawn Monaghan said she was “encouraged” following the meeting with NHS England.

She said: “NHS England has given us assurances that no data extraction will take place until we have agreed that the arrangements and timescales they are planning will give GPs enough time to carry out their legal duty.

“There has been a lot of confusion among GPs but it seems very unlikely the [information centre] will be able to start extracting data in the next four weeks as some GPs fear.”

tribpot Wed 16-Oct-13 22:16:19

It would appear that a wider public information campaign has now been ordered.

RedToothBrush Thu 02-Jan-14 16:38:24

I know this is an old thread, but I've just stumbled upon this from something mentioned in another thread and think it might be relevant to resurrect it, if they are sending out leaflets this month.

I'm horrified at the lack of publicity and lack of proper public debate over it as I've not heard a thing about it until today. Having seen the information that is supposed to be being sent out to the public about it this month, am concerned at just how transparent it is and how little information or reassurance the NHS is actually giving.

Having been so bothered about Bounty and its access to patients and their data in the past I find it concerning. All this business about explicit consent seems very worrying. When might you be approached, and by whom to give this information for example? A lot of the concerns about privacy and what constitutes informed consent that I had there, will rear their ugly heads again. Will people be mislead into consenting (in the same way as the Bounty Lady with her benefit form ruse) or worse still will people believe that they won't get certain treatments if they don't consent to sharing their data or approached at a time when they feel particularly vulnerable? Especially if its about getting, unusual or even experimental treatment. It has the potential to undermine equality in care if misused.

Thinking about it from the perspective of maternity wards because of my feelings about Bountry and the implication about it being an opt out system, it immediately stuck me about how on earth would you be able to protect your child's records, before they were able to get their hands on it? I'm not entirely sure you could from what I understand. Equally, it being an opt out system means that there are some potentially very vulnerable people out there who will have information about their health being shared. Given the above debate over whether a women who has just given birth might be deemed vulnerable for example, opens it up to a whole minefield of ethics. Are there going to be groups targeted by this as a result?

Whilst I like the idea of studying medical records; I am a supporter of what Ben Goldacre has been trying to do, I am deeply uncomfortable about how this appears to be being pushed through, the weaknesses in the system and the apparent lack of thought as to how it is going to work in practice. The potential benefit to us all is massive, but the potential threat I feel is perhaps too great at this stage.

I feel that when letters go out this month there are going to be three camps - the completely indifferent, the completely don't understand and the completely terrified. In terms of the third group I actually feel for GPs as I'm sure they are going to be bombarded by patients panicking about what is happening.

I wondered if any of the previous posters had changed their minds in someway, by perhaps felt more reassured/more worried since this thread was started and how other people felt about how it was being handled.

Ohfuckeryitsmarzipan Thu 02-Jan-14 16:52:41

I opted out when it was first touted to allow access to patients' records for nhs staff. (I didn't trust local surgery staff). I got the letter confirming it had gone through three years later...

Mrsdavidcaruso Fri 03-Jan-14 00:00:51

RedTooth is was GPS who initially wanted patients to be warned and have the right to opt put in fact they are being encouraged to do so
www.pulsetoday.co.uk/your-practice/practice-topics/it/gps-urged-to-proactively-support-nhs-data-sharing-publicity-campaign-starting-next-week/20005445.article#.UsX9DihQZ54

So they should be ready for patients 'panicking'

RedToothBrush Fri 03-Jan-14 16:37:00

Our GP didn't have a clue yesterday and certainly did not seem remotely prepared.

tribpot Sat 11-Jan-14 19:20:40

marzipan, as mentioned further up in the thread, opting out of the Summary Care Record (which is what you were probably told about 3 years ago) does not automatically opt you out of care.data. You need to opt out again.

Skiskiskis Sun 12-Jan-14 22:13:14

I started another thread on this after receiving the NHS paperwork and not understanding it. The receptionists at my GP's clinic didn't know either!

I'm certainly going to opt out but does anyone know how the opt out request can be confirmed by me?

As I said the receptionist staff at the GP clinic kept arguing with me about their levels of confidentiality blah blah blah and couldn't understand that the leaflet posted through my door suggested there was more to it.

WaitingForPeterWimseyNow Sun 12-Jan-14 22:34:40

Must remember to opt out for dc as well!!

fairbalance Mon 13-Jan-14 11:52:36

See Dr Neil Bhatia a GP in Yately Hants web site for information on this latest scheme it is a separate opt out to the Summary Care Record so you have to opt out twice. www.care-data.info.

bryte Fri 17-Jan-14 14:04:46

There's an opt out form provided here by MedConfidential

bryte Fri 17-Jan-14 14:14:03

Has anyone else received their 'information' leaflet and was it buried within a large pile of junk mail like mine was?

I'm astounded by the lack of debate in the news about this. I'd like to make people I know more aware about the potential issues of not-opting out so they can make a properly informed consent but I cannot find any well-written articles (suitably condensed) or information online that I can present them with.

Mrsdavidcaruso Sat 18-Jan-14 07:39:23

My GP confirmed yesterday that that all my read codes were in my notes and that I have opted out of SCR, local data base (vision 360) and the data sharing scheme.

Bryte check the no2ids forum there is a lot of info inc links to articles from Pulse and other sources

bryte Sat 18-Jan-14 11:19:37

Thank you. I will do that.

TheABB Wed 29-Jan-14 00:48:23

Mums, we need to get our heads round this programme. Every one of us and ours kids health data from GPs will be uploaded to this central Information Centre starting soon - and if we disagree, we have only very limited objections we can make. I've been looking at it closely for about 5 months, as I've 3 under twelve and I want to keep their health records confidential. I called the info telephone last week (on the bottom of the leaflet linked below). If you want to know more, they recommend we call that 0300 456 3531 number. But when I tried they only know as much as they have been told and one read off the website to me. Nice, professional, but not as knowledgeable as I wanted. If you still need more answers I'll help any way I can, or can point to the other websites and more information. I've read almost all I could find about it in recent weeks. " care.data "

ico.org.uk/news/blog/2014/~/media/images/content/ico-infographic.pdf

The public leaflets should have been delivered in the North first, and are not yet arrived down South. Look out for them. But they don't tell you very much. This is more complete - a brand new for GPs FAQs leaflet, which is a completely different picture of objection and requirements, compared with the past version.
www.england.nhs.uk/wp-content/uploads/2014/01/cd-gp-faqs.pdf

Official door drop flyer: www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/NHS_Door_drop_26-11-13.pdf

Official page: www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx

important: ico.org.uk/news/blog/2014/NHS-patient-information-and-the-Data-Protection-Act

We're expected to sign away our kids' identifiable data privacy for their lifetime by assumed consent & DPA '98 workaround? I don't think this works well. What do you think and what would you do?

Considering Snowden & US/UK data governance, I just don't think any agreements about data sharing with the US govt bodes well for confidentiality or for a state NHS - the data of our kids, the sick and vulnerable is being treated like a commodity like any other. Commercial companies in future expect to use Big Data, as the UK healthcare market is "primed" for US services and providers over here. Ref: www.healthit.gov/sites/default/files/hhsnhs_mou_final_jan_21.pdf. "…open data initiatives, advancing Health IT adoption, and priming their respective markets for innovative new Health IT products and services."

Can we tell family and friends to get informed? But perhaps this is not enough. Are you happy our data will be included at all? There's no opt out of pseudonymised data sharing, but I don't know which items are left on and which are scrambled in that option. We can only object from them sharing fully identifiable data. Not opt out from the whole project. GPs are legally bound by the Secretary of State to release it. If you want them to use it as they govern and under their confidentiality rules with researchers and third parties, do nothing.

If you want to restrict some identifiable sharing, contact your GP practice/reception.

TheABB Wed 29-Jan-14 00:53:12

https://twitter.com/TheABB

Lazyjaney Wed 29-Jan-14 01:38:13

Glad this has been resurrected, this is a disaster waiting to happen. It will be privatised profits, public bearing the costs all over again, with nice sidelines in identity theft and various other hackings.

Most people just dont realise what we are walking in to.

TheABB Wed 29-Jan-14 14:42:00

@LazeyJaney - so what can we best do, do you think? In my opinion, our GP confidentiality is the foundation of good primary care and ensures people especially teens, or those with communicable but sensitive conditions have confidence to get help or support. If they fear their doctor or others may be required to share that info, we may have all sorts of problems in store. I believe that political ideology is putting commissioning ahead of care. Front line clinicians will not get to see this data. There are really good reasons for having aggregated and anonymised data for trend spotting and risk prediction, and analysing treatment vs outcome, but I don't believe it should need personally identifiable data?

talulahbelle Wed 29-Jan-14 17:55:23

I am going to opt out as much as I can, I was totally unaware of this until the form arrived today - luckily I read everything and then decided to research further.

Link to a pro forma that can be used for opting out (I found the link on pulse, sorry if it's already been linked to)

https://dl.dropboxusercontent.com/u/14156524/caredata_trifold.pdf

TheABB Fri 31-Jan-14 17:54:25

Are you willing to ask for more information? I wasn't sure where to put this, so if it's misplaced I am sure it will get moved. It's hard to ask fro help on your own but was hoping that together we could campaign for more information to know what the bigger picture is all about - if we know what the future NHS will look like, we'll better understand why they want the data now and how it will be used in future.

http://www.mumsnet.com/Talk/am_i_being_unreasonable/1981636-Not-to-want-the-NHS-to-share-my-confidential-medical-records?watched=1&msgid=44748417#44748417

TheABB Fri 31-Jan-14 17:56:18

This link even! http://www.mumsnet.com/Talk/mumsnet_campaigns/1983765-Who-will-own-our-Health-data-in-a-future-NHS

Twitter: TheABB

tribpot Fri 31-Jan-14 18:26:47

Ben Goldacre is taking an interest in this issue, as he mentioned on Twitter recently.

HollyHB Sat 08-Feb-14 03:43:45

More in today's Guardian.
Police will have 'backdoor' access to health records despite opt-out, says MP
www.theguardian.com/society/2014/feb/06/police-backdoor-access-nhs-health-records?commentpage=1

The result of systematically destroying public trust in the NHS, the LAs and the Courts is that people will simply start keeping themselves and their children away from doctors. And others who can't be trusted. What a society it has become!

We need clinics where people can get health advice without giving up anonymity.

wetaugust Mon 10-Feb-14 13:03:43

This was discussed on Radio 5 last night.

The proposals are outrageous.

We opted out today.

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