/ Health

Your NHS record could save lives – will you share it?

Doctor holding clipboard

Would you be happy for drug companies to have access to your medical records if it helped save someone’s life, even if it wouldn’t improve the quality of yours? That’s exactly what’s in the pipeline – and I’m all for it.

This week the Prime Minister announced that anonymous medical records of NHS patients will be made available for private health companies to access. The purpose? To help drive innovation and invention in new drugs and therapies.

Having access to more information to help develop new treatments is a good thing in my book. But I do have some concerns about the nitty gritty.

Lots of ‘what ifs’

The default option will be for all patients’ data to be made available. It will then be up to us to opt out if we don’t want our information used. Recent incidents show that the government doesn’t have the best track record when it comes to keeping people’s information secure – but then neither do private companies.

Of course we often only hear about the bad stuff, as that’s what makes good news. Day in, day out, our data is handled safely and securely, yet people still worry about it.

The drugs companies say they want this information for research, but who’s going to be monitoring it to ensure it doesn’t end up in their marketing departments? At the moment, drug companies cannot market directly to patients, but what if this changed and the anonymous information became linked with people’s real details?

And what if this data does get into the wrong hands and ends up being sold to the likes of insurers or future employers? I’m looking at getting life insurance at the moment, so the last thing I need is to be pestered by cold callers selling insurance. More importantly, information about your health history could prove invaluable to insurers looking for reasons to charge you higher premiums.

Let’s increase chances of medical breakthroughs

Then there’s the fact that we’re opted in automatically – will people be told they can opt out at any time if they want to? When Summary Care Records were introduced, a lot of people were confused about whether they had to have them or not, and this was with a national mail drop explaining what was happening.

In certain circumstances (organ donation for example), a pre-ticked box is a good thing, but it’s not always appropriate. When it comes to advancing drugs innovation, I think it’s a good thing.

Lack of awareness or just not getting around to it often means people don’t opt in. So by default, fewer people would opt out. And this means there will be more information available for researchers, and therefore more chances of medical breakthroughs.

Personally, I think this is a good step forward, as long as it’s managed correctly and the data is kept secure. There is a great opportunity to see better drugs and therapies for some horrible diseases. But would you be happy to let your medical records be used for the ‘common good’? Or will you be opting out?

Ben Rose says:
7 December 2011

I think people get too hung up on privacy issues. Do we all really have that much to hide? I know I don’t.Happy to share my record but, being a man, I never go to the doctor anyway.

In answer to your question I AM NOT UP FOR IT.

Two points;

1. As far as I am concerned my SCR direction to my doctors practice also applies to this new proposal. If the pharmacutical companies want access I want something back from MY data. It is NOT the governments to do with whatever takes their fancy.

2. On anonymisation: perhaps you should read – http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1450006, the PDF can be downloaded. There is no such thing as having data anonymised if the Post code, Date of Birth and gender is available as they would have to be for the usage suggested then you can be identified.

Perhaps I need to take a document with me to the doctors each time I go stating the usage of data received and they MUST sign it each time to ensure my data is stored securely and only released if I grant access.

Phil says:
7 December 2011

If this information is of some value to the drug companies shouldn’t we be paid for letting them have access to it?

@Phil: You might like to read that the government will ask the private companies to PAY for access to data. http://www.no2id.net/newsblog/2011-12/bma-raises-alarm-over-nhs-patient-data-sharing-plans/?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=Feed:+no2id-newsblog+(ID+in+the+News)

So with regard to expectations of payment then yes we should be paid for the access to our data.

Most of us are alive and in good health today because, in the past someone, somewhere, was brave and selfless enough to allow a drug or procedure to be developed and tested on their body. If, in turn, some anonymous data about my medical history could improve another person’s life – then good luck with it.

Since the NHS derive and collect information about me as part of my free medical treatment, I wouldn’t expect payment for it. And if they could identify me to pay me for any information of value, it wouldn’t be anonymous … .

I think you miss the point, ‘someone is alive ‘ because they volunteered and therefore gave their consent. There is no such thing as anonymous data with respect to the types of research as they will require age, gender and locality otherwise they cannot establish patterns in the data.

The NHS collect information about you as part of the ‘free’ service, firstly it isn’t free as you pay for it by taxation, secondly the data collected is still your data that is stored on your behalf to aid in future appointments. You are not giving permission for anyone to use that data by allowing the NHS to store it.

What I want is the authority to release my data given suitable justification and not at the whim of the government. You just do not realise the power given to users of data mining in databases and with the intention of joining all this up then your whole life is laid bare believe me.

I am more than happy for my records to be used, it there is any way they could help. I would not take payment even if it was offered.

Surely no-one is naieve enough not to see that small pieces of information about an individual, in various logs of data can be pieced together easily to build a complete picture of your health, your needs, your vulnerabilities, your history.

Does this not go against the Data Protection Act? Will my data be destroyed once it has been used for a certain trial, or will it be kept as the possession of whatever conglomerate owns it?
I can see is no way that computerised data can be totally controlled and monitored when it is globally used.

This isn’t about some little NHS laboratory somewhere in England temporarily using our records for the good of mankind. Pharmaceuticals are global and powerful. They are businesses and making big money is their ethic base. Once possessed by them, data will be dealt with and available worldwide by all those who handle or attach to such data. Whoever is willing to pay, can have the data for medical research or otherwise. Many pharmaceuticals deal with both medical and weapons research (such as bioweapons, chemical warfare etc.). There may be instances where my data are being used for something I would not approve of, but I wont be able to find out, because it will be “commercially sensitive”.

It is not that I don’t want to assist in the progress of medicine, but I would wish to know precisely what I am contributing to and what data is being given. Some companies are taking out copyright on living plants and organisms so that they have commercial and thereby total control of these . Monsanto is trying to take ownership of food sources through developing and copyrighting GM foods.

From the philosophical point of view, this is all getting us used to the idea that life, which is a precious individualistic and complex system, can be manipulated as a commodity .

To me, my data is “me” in the computer world. This necessarily loses my identity as a person to those who use it. This mind set, can be transposed to real people. The more we are dealt with as just pieces of data which can be bought and sold, the more worrying it is to me.

I am sorry, but it is obvious that to encourage this type of thing is to demonstrate that our Government is being run by intellectual and ethical lightweights.

Well said, agree entirely

Jools – I cannot see any good reason to withhold information that could save lives. Clearly it needs to be anonymised and we need to be sure that this is done effectively.

The problem with information retrieval from social networking sites, such as Facebook, is well known and even using a Tesco Clubcard provides valuable information to the company. Insurance companies, credit card companies and loan providers collectively hold a great deal of information. That worries me more than what happens to my medical records.

Development of new drugs is a tremendously complex and costly procedure and however carefully clinical trials are conducted, it is important to make use of all relevant information, which is where NHS records are important.

I completely agree with your concerns about Monsanto and I am disappointed that little has been done to curb their activities in the field you mention. However, I don’t think this is relevant to the debate.

I would be more than willing to allow charities such as Cancer Research UK, Alzheimer’s Society or the British Heart Foundation to have access to my anonymised records for research purposes. The same applies to academics working in reputable institutions. I suspect there would still be privacy issues, but it doesn’t bother me that much in relation to the good it might do. But big pharmaceutical companies having access to my data is unacceptable. These are organisations with no sense of social responsibility, whose only duty, as they see it, is toward their shareholders. I am completely in agreement with jools.