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?

NHS England’s Chief Data Officer Dr Geraint Lewis said: “NHS England and the Health and Social Care Information Centre (HSCIC) welcome the increase in public awareness and debate about NHS data usage following the nationwide distribution of the leaflet ‘Better Information Means Better Care’.

“It is vital, however, that this debate is based on facts, and that the complexities of how we handle different types of data are properly understood. Patients and their carers should know that no data will be made available for the purposes of selling or administering any kind of insurance and that the NHS and the HSCIC never profit from providing data to outside organisations.”

www.england.nhs.uk/2014/01/15/geraint-lewis/

Is this UK as a whole?
How does Wales fare in all of this?

McFox

What you fail to understand is that whatever information is used now and however it is collected now, who ever has access to it now, who ever is approved now will CHANGE, the technology will change the laws governing it will change what you cannot do today with that information, you most certainly will in a couple of years time.

Who do you think will most benefit from this research? patients maybe
but the people who will get the most of of this research will be GPs to enable them to understand and treat medical conditions

Yet I am able to provide a link up thread to an article written by a GP well written, informative and very much against it.

If it is scaremongering and bullshit why are some GPs against it, why have some surgeries opted ALL their patients out, why have nearly 1/2 of all GPs who were asked made plain their intentions to opt themselves and their families out.

What IS bullshit (and arrogant and patronising bullshit actually) is your assumption that intelligent people will be against it in case something is left on a train.

It's like people walk around in a bubble, only stopping to occasionally pick up some misinformation from the daily fail.

Part if the problem in my mind is that clinicians can't get into the kind of debate we're currently having to persuade people about the benefits, so it all comes down to how the media reports it. Now bear in mind that there are fewer and fewer specialist health and science reporters working in mainstream media, and that this is a complex topic. This means that the complexities are often misunderstood, ignored or badly communicated in the interest of speed, column inches and lack of skill. You need to rely on your own research for issues like this one, just as you do for politics and other major issues, not just read a headline and instantly get up in arms about it.

Yes enlightened I am sure this MAY be the case on 1st February 2014
but wait until February 1st 2015/16/17/ and so on and see what happens

Oh and has Mr Lewis actually said WHY there was going to be no actual public consultation, why there was even going to BE a leaflet until the ICO and privacy protectors stepped in and forced HSCIC to produce one.

Its not a case of him welcoming public awareness - he couldn't stop it.

And even he in his article made it clear that there may come a time when more and more people will have access to the data

Finally, in a few exceptional circumstances the HSCIC will make red data available where legally required to do so, for example in a public health emergency such as an epidemic. In the future, red data may also be made available to an organisation that has obtained the patient’s explicit consent or has been granted legal approval by the Secretary of State for Health or the Health Research Authority following independent advice from the Confidentiality Advisory Group (CAG).

McFox

I opted out of this in September 2013 I am NOT swayed by recent headlines or the how the media is reporting it today - I knew about this
last year and I did my own research last year so again your assumption that I and other people make their life choices through just reading the newspaper is a tad arrogant.

Mrsdavidcaruso,
I certainly hope that technology is used to get the most patient benefit out of this data in the years to come. It is vital that it does, otherwise healthcare will continue to be the technological backwater that much of it currently is.

There may be many GPs opting out, but there are also very many who are wholeheartedly behind this. One clinician does not an argument make.

Tbh the people who can really can and will make things happen with this data in the short term aren't GPs. They are clinical directors, Caldicott Guardians, research teams, and heads of departments. These are some of the kinds of people who are already doing what they can to turn around a system where data sharing is used as a negative term, and allow such agreements to be used to make positive improvements.

Why the preoccupation with GPs? Research impacts across all healthcare delivery and that the really innovative stuff often happens very far from any GP surgery. It just takes years for primary care patients to benefit from it, in the main.

I was responding to train comments made up post, and as it seems that intelligent people are using that as a reason to opt out, then responding to it is perfectly valid!

Mrsdavidcaruso,

So you keep telling me, but it's clear from this thread and others that many people have not engaged with this up until now. People are swayed by the media, are you suggesting that they are not? Research suggests otherwise.

It is an acknowledged issue that there has been a steep decline in the quality of healthcare and science journalism in the past 10 years. Of course a poorer quality output, consumed by many people as their main source of information on a topic, is going up have an impact on public perception. Can you really tell me that can't see a link there?! That's not arrogance, that's fact.

Take it as patronising if you like, but not everyone is as au fait with privacy concerns as you are. I don't understand why you should be surprised by that.

Because you are saying that people are stupid. I generally take the attitude that people who are interested in things like this tend to have more than half a brain cell.

Well of course they have not engaged with this until NOW its only NOW that leaflets are going out even though this has been on the cards for a good many years.

And yes GPs are very much involved, if you are telling me that the frontline people the ones who make the initial medical diagnosis, the ones that refer a patient to the healthcare delivery teams that you say will benefit in having this data will not be involved, even if the benefits will not be seen for years GPs are the gatekeepers to our health service and as such should be the ones helping to push this through after all they have a stake in the health of the nation now and in the future.

And don't forget no-one can get this first wave of data without the GP being involved

Yes there are GPS who support this, however this link
www.gponline.com/News/article/1229152/GPs-face-investigation-patients-opt-data-sharing/ makes it clear why many of them do

Health minister Dr Daniel Poulter failed to rule out penalising GP practices with a higher-than-average proportion of patients opting out of new NHS data sharing arrangements.

In a written answer to Labour MP Rosie Cooper, Dr Poulter also refused to say what level of patient opt-out from the new care.data scheme would trigger an investigation into a practice.

Health select committee member Ms Cooper tabled three parliamentary questions on arrangements for practices where a large proportion of patients choose not to share their data.

Now of course the article goes on to say that 'no GP can be fined due to a patients decision ' but how many of them are going to take that chance.

I would rather live in a technological backwater then a country that has to be forced to make people aware of these large data mining activities
and how it impacts on them

This was funny take on the subject

I'm in no way saying that people are stupid, but you feel free to get on your high horse because it suits.

What I am saying is that the mainstream media is where most people get most of their information, and if that information isn't the best, then of course people - myself included - can therefore be misled, no matter the topic. This isn't a difficult concept.

McFox

If The NHS did not want people to be swayed by the media, if they didn't want the public to be scared of lap tops being left on trains if they thought that screaming headlines in the press would have an adverse affect on the work they are trying to do, why did they try to sneak it in through the back door, why did they have to be forced to inform the public by way of a leaflet printed and distributed only a few months before the programme is due to begin and without even an opt out form attached.

Why did they not inform the public last year (even in Sept 2013 when I first knew about it it was old news to many) why not give the public time to understand the issues, have an intelligent debate, why not engage the public and prove the benefits long before we had to make a decision

The fact is that it was known that people would object to this which is why they didn't make it public.

If people DO have a knee jerk reaction to press releases, then who's fault is that? not the patient, not the press but the people who thought they could use our data and sell our data without telling us the truth.

Sorry, but if my GP does not understand whats happening properly (and quite freely said they would be opting out themselves) do you think the government has tackled this properly?

There is outcry BECAUSE there has not been a proper public debate on the subject (why do you think GP representatives made such a fuss to even get the leaflets out in the first place).

The process has been without proper consultation with those who will be the gatekeepers. It has been deliberately biased and the leafleting does very little to address the concerns that many people have.

This is about trust, and in order to have trust you have to be open, honest and properly discuss a subject. But in essence the government doesn't want to discuss it, because it KNOWS that the whole idea is extremely open to criticism as soon as you put it under a microscope. Because its weak!!!

Instead we have been sent leaflets that are simply not fit for purpose.

REDTOOTHBRUSH

couldn't agree more

I can't speak for the NHS, all I can do, and have done, is give my opinion regarding whether this is a good thing or not, and why. But in true MN style, dissenting from the majority opinion is unwelcome.

The fact is, that regardless of the process behind the roll out of this, neither you or I know why it's not been in done the way you would have liked. My guess is that such a consultation would take a long, long time and the process would have become a politicised which would have been detrimental to the fundamental clinical research and service delivery issues that it is trying to tackle. How the NHS operates is an emotive issue, and a consultation would therefore be ripe to be used for political abuse/gain. That wouldn't have been in anyone's benefit.

We are all well aware that the NHS simply can't afford to continue operating in the way it currently is, and collecting and analysing data will enable improvements to be made across the board, from allowing more targeted community-based interventions to be directed towards those high-risk patients that cost the NHS a huge sum of money, to understanding why some people respond to a certain treatment and others don't. There simply isn't the time to debate this for years on end, and change using data is happening now, just on a small scale.

However, what's needed is organisation-wide change, and this can't, and shouldn't, be done without the appropriate evidence which can only be gathered as the result of large-scale data analysis.

You don't like my opinion, but unless things change, how healthcare is delivered won't change as much as it needs to. I'd rather that my care be based on me, on the understanding of my clinical data in line with at-scale evidence, analysis and understanding, not the way it's done now, where all treatments are symptom based and I'll have one drug after another thrown at me in the hope that one of them, one day, will work.

One of my concerns is not just who can have the information now but who will get it in the future and what they will do with it and who they will share it with.

I will keep on on FB ,Twitter ,this and other boards urging people to opt out and opt out now

Then good luck to you and please make sure to pat yourself on the back for making life-saving research all the harder.

Hey everyone - please let's be clear on understanding - the Department of Health is directly above the HSCIC - and the HSCIC is not NHS - they are an arms length non-governmental body receiving the data from across many settings including Office of National Statistics and other non-health sources too - the NHS which rightly uses our information to treat us, is being driven from above and let's not harm the NHS name with misunderstanding that.

Please, let's stick together and support the right outcome here - that we get mainstream education and proper information and not the 'who said what' - let's leave that to the enquiry that surely must come from those best placed to do that. Will you join to campaign to understand:

1. What is the current status of the NHS?
2. What are the future plans for the NHS?
3. And only if we have these, will we know who we can expect to have access to, ownership of and governance of our data in future?

This is not just a short term do I do I not share all my data question. It's fundamental to how the system of health and social care is going to work.
Let's not look back now too much at what the media have or have not said. The communications have been deliberately poor. The GPs will have spent adequate time I believe based on the materials they have been given, but not all will not have had opportunity to research background and so on, as some of us may. And many of us, will either have know nothing about it, or not had time, or necessarily the background to begin to know how to research it - (and no, I didn't know until last summer) regardless of all that - may we all agree that we do not have enough information to make an informed choice if we 'only' get the door drop leaflet, and we do believe that more Mums and families should be made more aware? MumsNet needs to be united to get some answers on behalf of families across England. We're all entitled to different politics and opinions, but please let's not bicker. Let's get answers. Please support the campaign-->>

www.mumsnet.com/Talk/mumsnet_campaigns/a1983765-Who-will-own-our-Health-data-in-a-future-NHS?msgid=44746968#44746968

Yes because there is no other way to find information that might save lives. FFS.

This is about the system being so open to abuse and the lack of safeguarding and debate about how the data will be used. As well as how this might impact on the future.

HomeIsWhereTheGinIs
Yabu. Large scale research on anonymised patient record forms is going to further a lot of medical research. What exactly is the problem? Your name won't be seen by anyone and your details could do a lot of good.

^^ this (although I don't totally agree that no one will see your name. The data gets redacted ie anonymised at different stages in the process).

• Clinical data wont just make big Pharma rich

• There is a lot of scare mongering and rhetoric going on about this topic

• I am pro- choice but

• we need to move our thinking beyond the immediate and think about the bigger picture which is that the NHS has a wealth of valuable clinical outcomes data that, if analysed appropriately and ethically can give Mankind significant insights for future generations.

In summary:

Lets not throw the baby out with the bathwater!!!