Not to want the NHS to share my confidential medical records?

[SusanC5]

I'm unhappy that any medical information that I share with my GP will be shared as from April this year I believe. My postcode and my NHS number could be released to "approved researchers".

I do not trust the NHS with my personal and confidential information.

AIBU?

Good god! You actually looked back and found that?!

Do you actually have anything else to do?

As someone said on another thread, you are a zealot and, as I have already said, I will not be drawn into a debate with you.

And don't YOU have anything more to do with your time then trawl through threads looking for comments about me -- here is a couple for you
zeezeek on the contrary, Mrsdavidcaruso's posts are very interesting

zeezeek - please don't make presumptions about what other posters want to read. You are in danger of coming across as arrogant.

I am very interested in MrsDavid's posts. You seem to be very dismissive of some salient points she makes.

The NHS and all its divisions seem to be littered with people like you self important ' oh I'm a Caldicott Guardian, I lecture in this, I train in that, I know so much more then the undereducated ignorant patient

Which is why we have the situation we have the fact that if people hadn't found out about this and put it out into the wider world, got people talking, thinking, protesting, challenging. Everyones data would have been put onto this data base and we wouldn't have even known about it, because the 'professionals' know best.

If when the database is uploaded in 6 months time 75% or so patients have decided not to opt out thats fine but at least by then they should have been given the chance, the information to make an INFORMED choice

You are so funny.

Evening all,
just to remind you that this forum is here to make parents' lives easier and all that jazz, so do try to be naice to each other as personal attacks will be deleted. And we know where you live.

I am totally perplexed as to why zeezeek is taking this quite personally. Little bit PA if I am honest.
Again, Mrs David, I have found your posts informative and interesting. Keep up the good work.
It is very telling that this has all been put on hold. This goes some way towards vindicating your posts and those posts of others who are quite rightly concerned.
Let's hope there is a complete rethink.

Looks like the NHS is backtracking after care.data put on hold
www.pulsetoday.co.uk/your-practice/practice-topics/it/rebel-gp-told-contract-notice-over-caredata-opt-outs-was-misunderstanding/20005908.article#.UwU2RCikJ55

And dont forget this is the second 6 month delay and still they didn't get it right

Uploads were originally scheduled for last Autumn until NHSEngland were told a poster & leaflets in GP practice were not fair processing

From Oct last year seems they have learned nothing since

www.ehi.co.uk/news/EHI/8940/care.data-extractions-on-hold

But funnily enough it says in this article
GPs received a letter in late August explaining care.data and telling them that they have eight weeks to inform their patients about the scheme before extractions begin. Patients can opt out of the extracts via a Read code in their record.

Yet here we are in Jan/Feb and GPs are still saying they know nothing about it - I do hope in six months time someones gets their act together

As promised I am sharing information as I get it

www.chroniclelive.co.uk/news/health/over-60-north-east-gps-6728990

The reason why some people did not get the care.data leaflet put through their door

www.whatdotheyknow.com/request/royal_mail_contract_for_caredata#incoming-484935

Dr Geraint Lewis, NHS England’s Chief Data Officer, has just confirmed to me that data of private patients who do not use the NHS will not have their data uploaded onto the care.data system - so I guess HIS medical records will be safe then

Disgusting.

Just to be clear, with little effort the data is personally identifiable and can be used by people you have never met to tie you to your medical history, and it will be entirely outside your control what is done with your data. There is also almost a certainty that this data will find its way into the sphere of insurers and financial institutions, whether its subsequent use is overt or not.

This is of "unless you give us written notice we will assume it's ok to burgle your house next week" proportions.

Can I please just ask everyone to consider that there are benefits to researchers having access to ANONYMISED data and to look at all sides of the story before making their final decision about whether or not to opt out.

I would also like you to know that there are no plans to use the care.data extractions for research.

CPRD - which uses data for research has been going for nearly 20 years and there has not been even one case of an information breach. It has also helped to find new treatments, improve patient care for a number of conditions including cardiovascular disease, diabetes, childhood and adult cancers, vaccinations, dementia......

In the latest information governance review, known as Caldicott 2, it is very clear that the HSCIC is classed as a safe haven where linkage of data can happen securely.

Please, everyone, think about all sides of the story.

That's all I have to say. I have no desire to enter into a debate and even less of a desire to be insulted and called an idiot who doesn't know what she's talking about.

Zeezeek, my biggest issue is that the data is not anonymised enough. Once we are opted in to this we cannot opt out so if we discover we don't like the way the information is being used we cannot change our minds.

The information isn't anonymised at source, it will be extracted with patient identifiers in order to link to HES data. This is done by the HSCIC. After linkage, all the identifiers are removed and replaced by one unique number which can only be traced back to a particular patient by the GP practice. Absolutely no-one else ever has access to the real identifiers. If they are stored (which, to be honest I have no idea about) then they will be stored by the HSCIC - which is an NHS body and works under the NHS code of confidentiality and all the other laws governing information security. All the employees of the HSCIC are also NHS staff - as are the majority of researchers who access this data.

Most of the data that is released will be anonymised and aggregated as this is what is needed for commissioning purposes. It's not in the commissioners interests to have patient level information as they are interested solely in population level.

The HSCIC do charge for the services that they provide. But then, if they didn't and if the money was coming out of the standard pot of money for the NHS, then people would complain about that.

NHS staff undergo rigorous information governance training with updates every year. All frontline, admin, managerial and auxillary staff have to have this training. Every single encounter with patient identifiable data is recorded and an audit trail kept. If it is found that someone is accessing data that they are not required/allowed to do then they lose their job. No second chances. NHS organisations who do not look after patient data properly are liable to 6-figure fines from the ICO.

In research, no patient information is ever given out to a researcher until or unless the patient has given informed consent. That is the fundamental rule of research. Also, each time the patient may present for an appointment or whatever as part of the trial, they are asked if they wish to continue being part of it. This is part of the GCP rules that everyone involved in clinical trials have to abide by. It is the law.

What I'm trying to say is that every single safeguard that can be made to protect a person's identifiable data is made every single day in the NHS. I understand why people don't trust the government (who would?) and I am also aware that there are breaches that make the national press - but what doesn't make the national press are all the times that data transfers, linkages, extractions are done and no patient data is lost/stolen/whatever. The latter is a much higher number than the former.

I admit that the communications about care.data have been useless and have failed to convey the message that they were supposed to have. They have also been misleading in that an organisation (CPRD - part of the MHRA and therefore DH) that has a long track record in safely handling data has been tarnished by inappropriate association with care.data. As an NHS researcher based both at a University and in a GP surgery, I have no control over the communications that DH make.

I wouldn't mind my rather boring medical details being used for research if it was truly anonymous. AFAIA, if my data is captured for care.data, it will include my NHS number, DOB and postcode. How is this anonymous? There are three houses that use my postcode. It wouldn't take much of a leap to find out my identity.

Under plans previously unveiled by the Government a new research body, the Clinical Practice Research Datalink (CPRD), would be able to bring together anonymised medical records from different sources and make the data available for sale to private sector businesses. Patients would be able to opt out if they did not wish their data to be used. However, the Department of Health (DoH) said that there would be a procedure whereby companies could be given access to identifiable information about patients whose data is used by the CPRD even if patients did not consent to such disclosure.
The DoH outlined the possibility in response to freedom of information (FOI) requests submitted by Ethics and Genetics, a pressure group in the life sciences sphere.

www.out-law.com/en/articles/2013/february/private-sector-firms-could-link-anonymised-medical-data-to-individuals-without-their-consent-says-pressure-group/

BTW Zeekak can you tell me if the data used by CPRD is only taken from
NHS patients (Dr Lewis has informed me personally that HSCIC will not use data from private patients only those whose treatment is funded by the NHS)

If it is a fact that only NHS patients data is used can you give me an indication of how many treatments that CPRD has helped to find are being denied to NHS patients due to cost.

www.bbc.co.uk/news/health-26277866

Mrsdavidcaruso - CPRD aren't new actually, they used to be known as the General Practice Research Database but changed their name to reflect certain changes in their organisation about 2 years ago. As an organisation they have been in existence for about 20 years now.
The HSCA 2012 does contain the clause that data can be used that way, yes, however, both care.data and CPRD give patients the right to opt out.

They do, however, do work with commercial companies. If there is a commercial research project, then CPRD will ask its contributing practices if they wish to take part. If they agree, then the practices will search their database to identify patients who meet the criteria for the study. The practices then contact the patient to ask if they want to take part and if they do, then they are asked to contact the research team, or the practice as appropriate. Only once the patient has given permission to be contacted does the research team see who those patients are. That is the procedure for both academic and commercial research. I do know that CPRD have a way of searching their database and then identifying the patients - or rather the unique identifiers associated with the patients - who might be suitable and then they send those identifiers to the practices to "de-code" and contact the patient should they wish to do so. Again, CPRD have no idea who these patients are and, even after the patient has been enrolled in the study, they never find out their identity.

I have no idea whatsoever about the issue of treatments being denied to NHS patients due to cost. That isn't my area of expertise. I would suggest you ask someone from NICE. For details of the research that CPRD have been involved with see their website - there's a bibliography there of about 1000 or so published papers.

The data collected by private medical insurers is not included, as far as I know, in any NHS data collection - CPRD, care.data, HES, QOF data etc. The data collected about patients in the NHS is of a high quality - mostly because it has to be because providers receive payment based on activity (eg Payment by Results for secondary care and QOF for primary). I have no idea what level of information is collected about private patients, or for what purposes it is used. I do know, however, that there are some medical insurance companies in the States have various databases that they use for health planning etc, but know nothing more than that.

Extracting and collecting data is not something that is unique to the UK - it also happens in various other European countries - Spain is one that springs to mind and possibly Finland as well.