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NOW CLOSED: The Wellcome Trust want to hear your views on sharing information from your medical records with researchers - please take part to be entered into a prize draw for a £50 Amazon voucher

(128 Posts)
TheOtherHelenMumsnet (MNHQ) Mon 19-Nov-12 13:09:22

The Wellcome Trust, a medical research charity, would like to hear your thoughts on allowing researchers (working for universities, industry or both) to access the information stored in your medical records. Here are a few words from them on the issue: "Medical records are an invaluable resource for researchers. They provide information that can be used to help understand what keeps us healthy and what causes disease. For example, the link between smoking and lung cancer was only identified using health data. It also helps women decide whether or not it is safe to use hormone replacement therapy and can highlight possibly risks of taking certain drugs to pregnant women."

However, the Wellcome Trust recognise that there are likely to be a range of views about sharing information from medical records and they'd like to open up a discussion with MNers and hear their full and frank opinions.

We want to be clear that Mumsnet is not siding for or against this issue, we're simply providing the forum for debate. Below we've laid out some info and would like you to answer the questions (listed below the info), as well as leaving any other comments you have on this thread. Everyone who does so will be in with a chance of winning a £50 Amazon voucher as a thank you for sharing their opinions.

- Researchers would like to access information taken from medical records to help their work.
- Only research approved by an ethics committee would be allowed
- All data would be anonymised so there would be no way that researchers could identify the individual whose records they were studying
- If identifiable information was to be used, you would be asked for consent to do so
- A parent would be asked to provide consent for their child's data to be used until the child reaches adulthood
- The Department of Health is updating the NHS Constitution to explain how confidential patient information might be shared with researchers and to clarify how this information is kept safe and secure. They have launched a consultation to ask the public what they think about the changes
- The Wellcome Trust have written a blog post about the issue - please click here to read it.

Questions:
- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?
- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Thanks
MNHQ

cherryjellow Mon 19-Nov-12 15:38:19

I don't think I would mind having my records used for this anonymously. Especially if it helped save some lives. When it came to dc, in theoryI would wait till teenage years when they understood, and give them the option for me to give permission. It wouldn't bother me where they worked. If I understand the last question right, I think it would be making sure patients identity cant be worked out, and then making sure the people who get the records keep them safe.... ( those would be my worries)

fuzzpig Mon 19-Nov-12 15:48:55

It really doesn't bother me, as long as it remains anonymous, and is for a worthy cause. So I'd rather not give info to industry if they were just going to use stats for an advert or something. But then, if it's anonymous anyway... hmm, I'm not sure really.

But for medical research, yes, absolutely fine, I have a fairly lengthy history (for my age anyway, I'm 25) of mental health issues, for example, so any useful info that could help others in the future I'd be happy to give.

I am actually seeing a specialist this week about ME, it is a research centre so I have already signed permission for my symptoms questionnaires to be kept for stats, and I assume they will want more info throughout any treatment. I think that's great and I'm pleased that my details could aid research into a currently untreatable illness!

The reassurance I would want is that my info will not be shared with a third party eg insurance companies who will then phone me up and try to sell me stuff angry

madrudge Mon 19-Nov-12 16:20:26

I would be more than happy for my records to be used for medical research. It would be anonymous and if it could help anyone then feel free!

Tyranasaurus Mon 19-Nov-12 16:24:12

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

fine for me and kids

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

would only provide for non-profits and org's who weren't religious, political etc

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

just remove my name and address and im happy

I've no problem sharing my totally uneventful medical records anonymously, as long as I am consulted about what they're being used for.
I already share a lot of information with the Breakthrough team for cancer research.
As previously said, I wouldn't be impressed if anyone phoned me trying to sell me things off the back of it though.

CMOTDibbler Mon 19-Nov-12 16:55:54

I'm happy to share all data that could possibly be useful to any research team. But I think that a data mining intermediary by a single organisation might be most acceptable - for instance the researcher would say to the mining centre 'we want to know about mastitis in 25-35 year old women in wales and its relationship to how many children they have' then the centre would go and pull that data and pass it to the research group who would therefore have absolutely no access to identifying information

Rattitude Mon 19-Nov-12 16:56:54

- How would you feel about allowing researchers to see the information in your medical records?
I would have no issue with information in my medical records being seen and used by researchers.

Would you allow them access to your records?
Yes

And how about your child(ren)'s records?
I have no children but if I had, yes, I would give researchers access to their records.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
I would probably support more wholeheartedly university researchers but I would also be ok if my records helped private companies in their research.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Anonymity is key, so I would expect great care to be taken when data is processed.

madamy Mon 19-Nov-12 17:15:33

I work in the health service and would be happy for both mine and my children's medical records to be used for research. What I would query is how the researchers would be able to get the information whilst not seeing any identifying details. Who would anonymise the record? I would hope it would not be down to the institution concerned, putting more work on health service staff! I like CMOTDibbler's idea of independent researchers pulling the information and presenting it to the people wanting the info.

ouryve Mon 19-Nov-12 17:29:05

General information, I'd be fine with being shared anonymously, eg for epidemiological purposes, but if information was more specific, I would expect to be asked specifically about what information was wanted and how it would be used - and by whom. I would expect be entitled to give informed consent or withhold my consent, as appropriate.

Absolutely I agree with this - my yougest dd and I share an unusual genetic condition and the only way to find out how this has happened is through research. We already are taking part in a developmental disorders study and I am more than happy to do what I can to find out more.

colleysmill Mon 19-Nov-12 17:31:57

My records are currently being accessed due to my medical and subsequent prescription history. I will be followed for life or until I withdraw my consent to this access. This is via the British dermatolgy register in partnership with University of Manchester.

Can it be explained how this is different?

ShatnersBassoon Mon 19-Nov-12 17:34:30

I wouldn't mind at all if researchers looked at my and my children's medical records, as long as it was anonymous. Anonymity is the main concern; I would hate for my medical records to be used to directly target me eg by retailers or insurance companies.

PuddingsAndPies Mon 19-Nov-12 17:39:18

I wouldn't mind access to our records so long as it was anonymous. That is the main concern.

I would be happy for records to be used for academic purposes - not totally sure about industry. It depends what it was for, I suppose.

gazzalw Mon 19-Nov-12 17:50:00

Yes, the anonymising of data is quite important especially as lots of people actually work in the health sector and therefore it is quite possible in the course of doing research that researchers could come across colleagues/peers medical records!

I assumed that this has already been going on for years - am I wrong in thinking this? Is it just that they are now asking our permission to do this!

Yes, fine as long as the information stays in the hands of academics/medical professionals and not being sold to drug companies etc....

FarelyKnuts Mon 19-Nov-12 17:50:24

Anonymity would be my only concern. otherwise let them at it. I don't mind who ie: private or university as long as they can't get my identifying details.
I would allow access to my child's records as well if she had any

nextphase Mon 19-Nov-12 18:27:48

Totally anonymous, and they can have mine, and the kids.
Name, address, and day/month of birth removed (they might need season for some things I guess).
It would also need to be part of a big enough set to ensure you couldn't be identified as e.g. the only black female with cancer in the set.

I think if it passed an ethics committee, and was going to be published (either peer reviewed journal, or open source) I'd let either academia or industry have it. I'd be more reluctant if the data was going to disappear into some system and not publicly available after analysis.

MegBusset Mon 19-Nov-12 18:32:01

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?
As long as 100% anonymised then I don't suppose I'd object, but it would have to be on an opt-in basis, with the option to opt out at any time.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
No.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Data security and 100% lifelong anonymity.

R2PeePoo Mon 19-Nov-12 18:39:21

I don't have any problem with this, happy to allow access to my records and those of my children.

As long as the same safeguards are in place it doesn't matter whether its for a University or industry.

I wouldn't want names and addresses etc attached to the information and I would not want to be contacted by any third parties as a result.

msrisotto Mon 19-Nov-12 18:43:51

I would be pleased for medical records to be used for research, my only concern would be about pharmaceutical companies. They are for profit and inherently untrustworthy. I wouldn't want them using the data to invent new pathologies and therefore drugs we don't need. I already have concerns for medicating young people with spurious disorders such as gender identity disorder and conduct disorder.

Tigerbomb Mon 19-Nov-12 18:51:46

I'd be happy for researchers to have access to my medical records - providing they were bona fide researchers. There would also have to be 100% anoniminity

The only thing I would be unsure about is if private drug companies have access to free research when they are charging fortunes for their products.

I like CMOTs idea re a central company is a good one

I would have no problem with my DC's info being used either. In fact they are already part of a large research project involving children of parents with cardiac problems

CheeryCherry Mon 19-Nov-12 19:21:36

Would be fine to allow anonymous access to my records, would be vital that it couldn't be linked to me. Happy for them to see my DCs records too.
Would prefer it to be accessed through universities for research, as I would be concerned that the industry would simply use the info for their own gain rather simply in the name of research. I worry that the research would not be impartial.
I think there would have to be some way of deleting all contact names/private details before the information was handed over to the big wide world.

Declutterbug Mon 19-Nov-12 19:21:43

Questions:
- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Yes, I would provided any info used was anonymised.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes, it would matter greatly to me. I would only be happy for independent not-for-profit researchers (i.e. public sector, universities, charities etc) to do this. Give industry my medical records over my dead body (and actually not then either thanks).

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Anonymity and Prior permission.

Welovecouscous Mon 19-Nov-12 19:39:31

I would not agree to this whatever safeguards were in place for either me or dc. Sorry.

NorthernNobody Mon 19-Nov-12 19:48:39

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would wish to be consented properly i.e. given information about how data will be extracted and stored. What data will be taken.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes. Probably not happy to provide my personal data to industry who will profit from it without a fee Very happy to provide it free for research to benefit patients without private profit

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Use an IT provider with track record in this area, provide patients with information when data is used and for what

NorthernNobody Mon 19-Nov-12 19:51:32

....all research to have been approved through a rigorous ethics/research committee regarding purpose, intention, remit and research design as a given of course

Dru77 Mon 19-Nov-12 20:03:01

This already happens on a huge scale; there are multiple GP research databases that contain your data:

www.cprd.com/intro.asp
www.qresearch.org/SitePages/Home.aspx

Your prescription data is already released under the open data initiative and your hospital data is available from the NHS. Where researchers want access to identifiable data they can apply for special permission and get access in the absence of your consent. www.hesonline.nhs.uk/Ease/servlet/ContentServer?siteID=1937&categoryID=245

There are also the IT suppliers that supply GP practices - at least one of these is setting up a research database already. www.tpp-uk.com/latest-news-stories/researchone-gets-ethical-approval/

missorinoco Mon 19-Nov-12 20:25:06

I wouldn't mind provided it was anonymous and related, and that approval had to be sought to access records prior to it occuring. As in, as part of the research application a line was put in explaining how my records were relevant.

I would allow access to my records and my childrens'.

I would not mind who the researchers worked for, but it is for a private (drug company) I would rather know first. With regards anonymity, if they are reading my records I wouold like to know they are remaining within the hospital, and that the NHS governance principles for confidentiality
are followed.

"- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?"

They have to be kidding. These people lose files on buses with confidential data on it. I would not be reassured by any DoH safeguard per se. Just ensure the datasticks are encrypted.

Leafmould Mon 19-Nov-12 20:45:27

I would want to grant specific permission for my records to be used. And I would want to see them myself first. I really have no idea what is in my medical records and would want to know what it was befor allowing it to be shared however may guarantees that it would be anonymous.

NiceBiscuits Mon 19-Nov-12 20:45:39

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records? Fine for both.
- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place? No, either is f
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

NiceBiscuits Mon 19-Nov-12 20:47:46

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records? Fine for both.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place? No, either is fine

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used? Keep it annonymous.

Belmo Mon 19-Nov-12 21:30:12

I wouldn't mind, if it was anonymous. I'd share mine/my kids.
I think it would matter to me who was doing the research - a university would be fine, but I'd be very dubious about a company. I would want to be sure it would be kept anonymous, and not left on a laptop on a train or something.

trice Mon 19-Nov-12 21:34:34

I have already consented to be part of several clinical trials. My data, my genome and my tissue samples are all at the university. I am very happy to do my bit to help improve medicine.
I think if industry are going to use data from the public in their research they should be forced to publish all their findings in an open forum.

ICutMyFootOnOccamsRazor Mon 19-Nov-12 21:57:27

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would be ok with it in certain circumstances as long as all the records were properly redacted. Ideally, I would like to have access to my own records that I could redact and forward on to specific researchers as and when I wanted to. Ditto my children's records.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes it possibly would. I would like the opportunity to judge each request on a case-by-case basis rather then giving blanket approval.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Complete confidentiality of records and transparency in their usage.

joanofarchitrave Mon 19-Nov-12 21:57:27

Researchers' access: Fine for me and the children. I like the sound of CMOTdibbler's idea of an anonymising researcher layer

Not worried about who is doing the research, provided there are some basic safeguards - I would want anyone going into the data to have an employee/student relationship with an organisation with some sort of clinical governance/ethical procedure in place. I would also consider it essential that said research is registered and published whatever the outcome, and the full data from the research goes back into a resource that is also open to all researchers.

Most important safeguard - an ability to look at your own research-enabled 'record' (nobody else's) so that you can see exactly what a researcher would see.

drcrab Mon 19-Nov-12 22:00:21

I repulsing mind sharing such information especially if it contributed somehow up a breakthrough in medical research. I'm already part of breakthrough for breast cancer.

I'd want it to be from a university research centre or somehow linked to university so eg it could be sponsored by Pfizer but in conjunction with university.

No problem for kids data either.

drcrab Mon 19-Nov-12 22:00:56

Doh *wouldn't mind!!!

ohmeohmy Mon 19-Nov-12 22:43:08

On one level I recognise the importance of research to make progress but I think there are some inherent dangers in this. It could be the case that in rare conditions it would be easy for data to be traced back to an individual with very few pieces of information.

I do not think that there are sufficient safeguards in place for the data to not be misused by for example insurance companies.

I don't mind academics using the data in general but who is funding the research? Private companies should be charged enormous fees by the NHS for the use of this data so that the NHS can try an recover some of the funds flowing out of the NHS to private companies under the abominable system of desecration this Govt has instigated.

I don't think the DoH can be trusted on any issue, including safeguarding data.

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

In theory I would have no problem with sharing anonymised data either for me or kids, as long as I \ them could opt out at a later date. I have questions though about who would Be responsible for anonymising that data as it would be a very important role in the process and it's not unheard of for trusted insiders to sell data.
I get the point that this is for the greater good, really I do, but the financial rewards on offer to people who have this data to sell will be great. And once it's out there, it's out there.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No, because the issue as I see it is ensuring that anonymity and confidentiality in the first place. That will be difficult to achieve. Humans are the weakest link in the chain.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Theres no point saying it will be encrypted, that can be broken. Or easier sold before encryption. Or lost because the person doing it was in a hurry to get home, didn't encrypt it and left it on a bus. These things happen and already have. There are no safeguards that can be given, to a satisfactory level.

All of this above assumes that the data would be exported from dept of health to relevant party. It's even worse if the idea is to allow access from the other party to DOH data. There's no system that can't be got into given the right amount of money, time and people, once it's opened up. The actions of Anonymous should tell you that. The DOH would need defences akin to NASA (and they were hacked - by one guy on his own who is still fighting extradition) and they just don't have that unfortunately. Plus then there's governments writing code to infiltrate other countries (see Stuxnet) and there is no way that my humble personal information is not freely available.

IT security is just not taken seriously enough.

Sorry. <adjusts tinfoil suit and tilts hat>

BitBewildered Tue 20-Nov-12 00:32:30

I would be happy for my completely anonymous medical history to be used for research but only by universities or companies who were not funded by or in anyway attached to any religious/political body, or any organisation which was not doing research purely for medical purposes. I would want to help improve knowledge and/or patient care, not provide statistics for someone with an agenda.

As above, as long as all the data was properly anonymous and no information was sold for marketing etc, I would be happy for mine and my children's info to be used.

BoerWarKids Tue 20-Nov-12 01:15:52

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I think it's a good thing for the purposes of research and increased understanding. Anything that would benefit patients is a good thing.
I would allow anonymous access to my records but I would be concerned about my personal data and history staying confidential.
I don't have DC, but hypothetically I would allow.

Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I woud allow for a University, research institute, but not for a private company/big pharma.

What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Not sure how to answer this, I'm not confident that confidentiality would be maintained?

Tee2072 Tue 20-Nov-12 07:49:07

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

It would be fine with me, including my child's records, provide all possible anonymity safeguards are in place.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I would prefer University versus industry, just because I think pure research has shown to have more results than research for profit.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Removal of all identifying information. All. I wouldn't even be comfortable if they used part of hospital numbers or similar to identify different cases. It has to be a unique identifier to be completely private.

lottiegarbanzo Tue 20-Nov-12 08:22:51

It will be anonymous, so no problem.

Happy for universities. Not happy for companies to take info, as they have a record of not publishing results and withholding findings in their own commercial interest. They might also seek to claim ownership of processed data in a way that prevents use by others.

This is a massive public resource, created out of billions of pounds of public spending, on training doctors and running the NHS, as well as being information 'volunteered' by vulnerable users. All uses MUST be for public benefit and available to other researchers. That is the safeguard I want.

In fact, I would want all users to sign an agreement that they will publish their results, within a fixed time, whether their work was successful or not. Not publishing negative or indifferent results is a real barrier to progress and understanding.

lottiegarbanzo Tue 20-Nov-12 08:29:20

Oh also, I think the idea of asking patients each time is completely impractical. You opt in once, your records are available.

There will be many requests and the admin of seeking individual permissions would be overwhelming and very expensive.

Also, explaining the research so that thousands or millions of patients are truly able to give informed consent would be impossible. Any explanation most people would take the time to understand will be simplistic to the point of meaninglessness.

No, absolutely not and ditto for my children's records.

I'm currently part of a university research program into my particular mental health issues. I'm doing it as I wanted to help in this particular area of research. That was my choice, not someone elses.

Ethics committee or not, there is no guarantee that my data wouldn't be used for something that I don't personally agree with, or would want my details to be used to forward. Ethics committees are subjective after all - regardless of how much people strive for objectivity, they will always have their own opinions influencing their view. Why would I be happy for someone else to judge whether my records should / could be accessed? The only opinion that should count is mine.

For data to be anonymised, it has to be accessed and therefore someone during the chain would have my details against my name. I have no desire for my details to be accessed in this way.

There is not much advertising in the mainstream to ask for people to volunteer for research studies or allow their records to be accessed. The fact that this hasn't happened suggests that the researchers know that the uptake would be small - hence their need to get a 'back door' into people's personal and private details.

orangepudding Tue 20-Nov-12 09:26:25

As long as it's anonymous I wouldn't mind. I would also be happy for my childrens to be used.

MrsHoarder Tue 20-Nov-12 09:28:39

I would not want anyone to have free access to my medical records to look at everything, and I would not want a private company to be able to look at anything.

If I had a medical problem research was being done into I would be happy for a list of suspected links to be given and for me (possibly with the aid of my GP) to give a response to that, but I wouldn't want there to be free access to data mine my medical records however anonymised.

Surprised at how strongly I'm bothered about this actually, DS is in a clinical trial, but I wouldn't want anyone to have access to his medical records.

I'd have absolutely no problems with having my medical records shared for use with researchers.
I would also be happy for my children's records to be used, as long as it was anonymous I can't see a problem.

ImperialStateKnickers Tue 20-Nov-12 09:43:13

I'm happy for mine and my dds records to be used, provided they are anonymised, at the researcher's expense, by a third party, and that all results are peer reviewed and freely published in eg The Lancet, not hidden in the depths of a pharmaceutical company's data bank.

DonaStColumb Tue 20-Nov-12 09:53:31

- How would you feel about allowing researchers to see the information in your medical records?
I would be happy for my medical records to be used in medical research.

Would you allow them access to your records?
Yes

And how about your child(ren)'s records?
I wouldnt have a problem with this.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
I would have concerns about my medical records be used by profit making companies. However, this depends on what they were using it for (i.e. whether they would be used to provide research which would benefit people or to produce a drug for the company to make money out of).

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Having strict rules in place for any researchers using medical records data (i.e. where the data should be stored, how the results should be presented to avoid identification of an individual etc). That data would be anonymised before handing over to researchers.

Blu Tue 20-Nov-12 09:56:08

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?
In an anonymised condition i am completely happy for my records to be available to legitimate research organisations, doing approved ethical research as long as it is for the public good and not just for commercial profit.

-*Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?* I am less trustful of industry because of the temptation to undertake research with the greatest likelihood of eventual profit. The information, as far as i am concerned, is mine and the NHS's. The NHS paid for the doctors who diagnosed and recorded the information and the benefit should be re-invested in the NHS.
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used? The system for maintaining anonymity, and for regulating the organisations and purpose to which the info is used. Patients must have the option to opt out, and we must be able to be told what systems are in place - and have a democratic say over them through some open structure - like a PCT with elected members of the lay public on it or something.

ListenUpIdBeAGreatLifeCoachMe Tue 20-Nov-12 10:16:36

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

very happy, medical care is central to my families long term survival, research improves our care and our lives. As an individual I take what I need from the NHS, I can provide a tiny bit of data but together we could all fathom out something amazing.
- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place? I prefer University based research since given the inability to effective tax companies who benefit from our stable tax funded country, they would take all the 'profit' and give very little back.
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Don't know

I would be happy for mine and ds records to be used as long as I was asked in advance and given full information about what the research was, who would have access and that it would remain anonymous.

I would only consent if it was for specific research, I wouldn't want my records to be sold or added to a free database.

EauRouge Tue 20-Nov-12 11:18:07

If it's completely anonymous and for a good cause then I would think about it, providing there were safeguards in place. Having been cheerfully told by an ex-school friend that she had seen all my files whilst temping at the local hospital and had a good read of my mental health notes over a tea break (which were hilarious apparently hmm ), I hope that staff will be vetted if they are allowed access to sensitive or confidential material.

I would rather consent for each study individually rather than have a blanket 'yes, anyone can use my records' consent.

Elfontheshelfiswatchingyou Tue 20-Nov-12 11:47:05

I don't mind sharing my information in theory but don't think someone should be making money from it unless any money goes straight into healthcare. My concerns are more with data protection as lets be honest, there have been some major cock-ups in recent years.

The same goes for my children. We all benefit from the NHS and medical research so as long as it is for the greater good that's fine. The idea of someone using our medical records for profit does not sit well with me though, too many medicines/treatemnts depend on cost/postcode etc. and this seems very unfair.

Hopezibah Tue 20-Nov-12 15:16:37

- How would you feel about allowing researchers to see the information in your medical records?

I don't mind about anonymous records.

Would you allow them access to your records?

Probably would. Especially if it became conosidered the norm i.e. if enough people were happy for it to be done it would be more unsual to say no.

And how about your child(ren)'s records? as above.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I feel it is more 'worthwhile' for University researchers - don't really know why i feel like that because I know that industry make a lot of medical breakthroughs too. but that is just my gut feeling.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Ensure records are TOTALLY anonymous before even being passed on. or only being passed on at an aggregate level.

WowOoo Tue 20-Nov-12 16:18:23

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

At first I thought I wouldn't like this but on reflection I guess it would be fine. Yes, they could access my records the dc's also.
I'm sure lots will be learnt from it and i can't believe it hasn't been done sooner.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I would not want anybody to profit financially from any of the information. A university seems more worthy somehow.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Anonymity.

TheLightPassenger Tue 20-Nov-12 16:46:09

as Dru says, this already (anonymous information sharing) seems to be taking place, so would the main difference be expanding the access to industry? Personally I would not want to allow industry/private companies full access, I would want more information about what information was needed, and why.

Elainey1609 Tue 20-Nov-12 17:06:31

I wouldnt mind my records being used for research, it will enable future psotive changes to medicine and the way its provided, Hopefully saving lives.

There has to be some safeguards in place though inclunding it bening anomous, and confidentiality.

I also wouldnt want all my details bought by different companies so theere should be a privacy issue in place.

spyinglife Tue 20-Nov-12 18:24:18

Questions:
- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would be happy for them to access mine and my children's medical records

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No, I don't think so. Obvioulsly I would like the research to be for good and not for evil, but other than that . .. .

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Annonymity.

Gethsemane Tue 20-Nov-12 19:41:16

My feeling is that basic fully anonymous info like frequency of disease occurrence, treatments and success rates, age, sex, and co-morbidities should be documented automatically for all individuals (regardless of their age). This info is very valuable and completely wasted at the moment. Any further detailed info would have to be requested specifically and consent given. I feel that this resource should be freely available to academic institutions, but available at a cost for industry.
That said I can't imagine that a system like this would ever be successfully implemented in this country. Didn't the NHS fail even to fully convert patient notes to an electronic system??

HazeltheMcWitch Tue 20-Nov-12 20:01:33

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I'd be hesitant, and would like to know more details of exactly what details were to be captured, how they were going to be used ad by whom, and how anonymity would be maintained. I'd also like the option of viewing this info myself. I'd also like to know how much such a programme would cost, and what we would have to forgo to afford it.
I'm quite nervous about this idea without knowing more. I think that the expensive failure of the NHS electronic notes gives me NO faith that this could be successfully implemented!
I also have quite a rare medical issue, and I have participated in a drugs trial, have donated tissue samples etc etc, but this was with my explicit consent and I could (broadly) understand how and by whom the info would be used.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes! Like others, am very uncomfortable with industry having access to my records, and then charging me/the NHS for the resultant 'products'.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Annonymity.

DorisIsWaiting Tue 20-Nov-12 21:15:31

I wouldn't have a problem with annonimised access to my medical records but data security should be paramount.

DD has a condition hwere data is shared with clinical database every year. This data is then passed onto reasearchers and hopefully will ultimately help future treatment of the condition.

I don't really mind who has access to the annonomised data, but I would prefer the actual records only to be sighted by those who have no finnancial interest. I realise as with my daughter's condition drug advances are largely by the big pharma companies, if they can be enhanced with old data (not quite sure how that would work but...) then great!

The DOH needs to be able to demonstrate that outside companies -insurance etc would not ever be able to access the personal detail in the data, so showing how it would be accessed and stored would be good. there also needs to be a certainty that records should still be easily available should medical teams need them i.e. not removed off site.

GetKnitted Tue 20-Nov-12 21:57:32

I want to say that if it was anonymous I would be fine with it. But I'm a bit concerned that maybe I would think that the research was inethical or intended purely to generate profit. I'd rather be asked routinely to opt in by ticking some boxes next to study names.

thewhistler Tue 20-Nov-12 22:16:25

Ds and I get a huge amount from the nhs and he is already part of some research and has given permission ever since he was little for other people to see his records and data for research into another area.

So, no problem seeing either his or mine, or both as some of the research us genetic.

I prefer, instinctively, the not for profit makers to get the data but, as others do, accept that the big drug companies need it too, but would want them to contribute financially to the pure research done by the HE/not for profit sector if they were getting data, and/or to have some obligation to share it. Ie I don't want them to have an advantage and to squeeze the not for profit sector out.

Perpetual anonymity and explicit consent are my conditions.

zzzzz Tue 20-Nov-12 22:20:02

Absolutely not for me or my children.

Bigspring Wed 21-Nov-12 07:58:57

I would not mind especially, I feel though that we should be informed if our records are to be used, what data is being extracted and the reason forit .
They should be using people's records for the good of our society not to be just making a profit so yes it could be an issue who uses them.
I would not mind my children's records being used as long as again it was for a good cause
Being honest with patients and allowing informed consent is a vital safeguard for the doh

Firawla Wed 21-Nov-12 10:40:10

I'm quite happy to share info if its for research or a beneficial purpose. Recently was asked to let my ds details be on a list for an asd research thing, which I am happy to do but havent sent them all the permission forms etc back yet as i have had so many other forms and paper work to do so I actually think it could make life easier if they make it opt out rather than opt in, although sure some wouldnt be happy with that but to me it would have been the better option.
Obviously all data needs to be kept secure and confidential so need to be sure it is a reputable group/company you are sending it too, but if the info can help get more info for medical or developmental problems then thats worth it to me.

prakattack Wed 21-Nov-12 11:45:12

I'd be happy for mine and my children's data to be used in this way - the information is invaluable for research. I'd want to be absolutely confident it was anonymous - as posters have said, using a data mining intermediary and
/ or a company with established experience would be essential.
I'd be less comfortable with the information being accessed by for-profit companies but I'm not sure I can articulate exactly why this makes me uneasy, it's still anonymous so... hmm I don't know!

Trills Wed 21-Nov-12 14:21:31

I'd be very much in favour of anonymous data being used - in fact I think it's rather silly that it isn't already.

Good stuff comes out of industry as well as out of universities, so I wouldn't mind either using my data.

The most important thing would be that the anonymisation was done well and kept secure.

I'd like it if there were some rule that said that any discoveries made using this data should be published in open-access journals (pure research) or a portion of the profit made should go to a useful place (industry). Not sure what that useful place would be. Going towards the upkeep of the databases? Going to a relevant charity?

aristocat Wed 21-Nov-12 14:31:44

I would not mind at all if my details (or my childrens) could be used for medical research, and would hope that we could be told what was needed and how it might help. Obviously all information should be anonymous.

SlightlySuperiorPeasant Wed 21-Nov-12 15:35:55

- Yes I would allow access to records on both me and my children.

- I wouldn't mind who they were used by as long as the ethics committe was vigorous in its vetting system.

- I would like to be reassured that raw data wouldn't be left on a train etc. but you can't legislate against stupidity.

I would consent with the following proviso:

No individual identifiers
No wholesale selling of data to anyone
Fort Knox style data protection safeguards

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would be fine as long as my private details were kept private and I had the option to opt-out

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

As long as it was all in confidence, no I wouldn't mind

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

I would like clear information on what data was being taken and how it was going to be used

Solopower1 Wed 21-Nov-12 16:14:28

The main thing I feel is that we should all, whatever age, be asked before any of our data is given to anyone apart from the medical team treating us.

In fact, I was shocked by the way the OP put it. You didn't say anything about our consent being needed for any use whatsoever other than what we gave the medical information for - ie so that our doctor could treat us. Nor did you say we would even be informed!

There are several reasons why someone would want to look at our records, and only one is likely to benefit us, ie legitimate research into curing diseases. This sort of personal medical information is worth squillions to companies, so I would also want to know how much they were paying for it and who they were paying.

Solopower1 Wed 21-Nov-12 16:16:16

So anyway, here are my answers to your questions:

- How would you feel about allowing researchers to see the information in your medical records?
I don't know. I would have to know who they were and why they wanted it.

Would you allow them access to your records? See above.

And how about your child(ren)'s records? See above.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes, it would matter very much indeed.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

To give us the responsibility for agreeing or not. That means telling us when someone wants our medical details and supplying us with all the necessary information for us to make an informed choice.

Or you could give us custody of our own records, in which case the companies doing research would have to contact us directly.

NightLark Wed 21-Nov-12 16:25:05

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I'm more than happy for them to be used for research. I am deeply concerned about the trend at the moment to seek informed consent for every use of records - the differences between those who consent and those who don't stand every chance of scuppering valid population based research.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes. I have a strong gut reaction against them being used for industry. I can;t understand why information collected by the NHS (and thus funded by the taxpayer) should be given to industry for the benefit of industry. The profit motive gets in the way for me.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Anonymity - assurances that all data will be anonymous and, once released for research, cannot be traced back to an individual.

Solopower1 Wed 21-Nov-12 16:26:43

Thank you, Dru 77, for the links. I had no idea this was allowed by law:

'Even though it is allowed under law for us to have access to anonymised data we offer patients the right to opt out from the use of their anonymised data. GP practices that are part of the CPRD data system can mark your data as, not to be used, even in an anonymised form, for CPRD research projects. Over the last 7 years we are aware that very, very few patients decide not to let their anonymised data be used for what are very important public health reasons- improved, effective and safe treatments.'

I have never been asked by my GP whether I would like to opt out of the use of my anonymised data - and if that is the same for others, that could be the reason that very few patients object.

neriberi Wed 21-Nov-12 16:32:07

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

They are more than welcome to my records as long as my details remain anonymous and consent has been sought. I have a really rare genetic condition and regularly offer myself up for studies so I have no problem with this. And I have no problem with my child's records being used either as long as the details remain anonymous.

Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
As long as the same safeguards, anonymity and confidentiality procedures were in place it wouldn't matter.

What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Seeking permission to use the records and the guarantee of anonymity.

MissMI5 Wed 21-Nov-12 17:19:55

I wouldn't mind sharing my personal health records or my children's if this was for medical research purposes. If private companies were sold the information and started using them for other purposes then I wouldn't agree to that.

My worry would be that those who handle the data may make genuine mistakes and potentially expose our identity or other details such address, phone numbers etc.
For example, the council was sending out some info the other day and the officer in change of sending out the information shared our contacts details with the whole mailing list. That's human error, yet it can cause serious damage.

Ideally the information would have to be stored in a database that extrapolates info on patients' medical conditions from GPs without taking the name of the patient. It's an ambitious project and I'm not sure the resources would be there to do that.

So in principle I agree that sharing information would be extremely useful, I worry about the practicalities attached to that process!

Punkatheart Wed 21-Nov-12 17:33:37

Questions:
- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

The anon element is important so yes, I would allow access. In perverse logic, I would not allow access to my daughter's records. However, when she is old enough, of course I would let her make that decision.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No, as long as animal testing was not involved directly.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Really - the identity is paramount. Not to be left on a memory stick on a 'bus.

NettleTea Wed 21-Nov-12 18:03:35

I have no problem with mine, or my children's, records being used annonymously for medical research so long as it is for the public benefit, or student research.
Not happy with big companies who are going to make huge profits or expensive drugs which stand little chance of being made available for those who need them.

k4mi Wed 21-Nov-12 18:07:56

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would not mind as long as i could get a guarantee in writing that they would be anonymous. I would prefer it was just me and not my daughter though I think because eventually that would be her choice.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I would only really want to provide my information for non profit companies / government research and not privately owned medical firms. I would not mind for Universities as long as it was being used for medical training.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Removal of name and address on all records and NHS/NI no etc through which it could be traced?

carovioletfizz Wed 21-Nov-12 19:33:50

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records? * I would have no problem with this for my records or my children's records.*
- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place? No, if the same safeguards applied.
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used? That the most stringent and robust security is in place to protect all records, from a provider with a solid history in this area.

Snog Wed 21-Nov-12 19:40:25

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?Would like to be asked for specific permission on each occaision and to have full information about the research
- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place? Yes. I would be more likely to give access to my records to not for profit organisations
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?That they must give specific permission on every single occaision

Lifeisontheup Wed 21-Nov-12 19:46:43

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?
As I have no problem in accepting treatment which is research based it would be hypocritical not to allow access to my records for other people to benefit in the same way. The same goes for my children.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
No, a lot of research has to be funded by big companies as they are the only people to have the funds.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used? Anonymity.

hobnob57 Wed 21-Nov-12 19:57:59

I think it is vitally important for epidemiological studies that our data should be made available on a population basis. However, the issue of anonymity is an important one and the safeguards against selling information or unauthorised access are paramount and difficult to make watertight. On balance I'd rather take the risk and make mine and my children's records available. As others have said, the issue of industry access is bittersweet as they do provide a lot of better-funded, important work which does provide us with a lot of benefits. However, they should pay for access and publish all results, not just those that are in the self-interest of the company so that all research in that particular area can be informed.

leftangle Wed 21-Nov-12 20:04:43

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

If records are anomymised quite happy for researchers to access my data and my childs.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Universtity fine, if industry would like guarantees that results of any study be published - good bad or neutral.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Allowing patients to see them and discuss confidentially if there are things that should be changed (patients should not have the right for them to be changed, only for inaccuracys).

MrsDeVere Wed 21-Nov-12 20:27:55

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

My daughter's records have been used in a number of studies and also one of my son's. My daughter gave her consent (she was 12-14) and I am happy for her case to be used now she is dead if it can help other families. My son was not capable of giving consent so I took the decision as his parent. Whether or not I would be happy to give consent for my records to be used would depend on a number of factors.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
I would only be happy for my records to be used by non-profit making organisations.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Informed consent MUST be given and total anonymity MUST be guaranteed

jimmenycricket Wed 21-Nov-12 20:47:56

I've no objection whatsoever to the information sharing with researchers. Our local hospital is a teaching hospital and they do a lot of work collecting samples/info for research purposes. It's good. They've developed some amazing procedures because people were willing to let their anonymised info be used to collate data and solve problems.

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Rather researchers than GP receptionists frankly. At least the former are doing it with some training! I don't think medical records are that interesting or valuable to individual people. I don't actually care if someone reads I once had piles if it means that twenty years down the track, someone cures cancer.

Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No, don't care. This happens currently.

What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

I think the anonymisation process needs clarification but I don't think opt out should be possible. You use the NHS, it's a public service ergo the info it creates is public (apart from the personal identifiers). We need to get away from this stupid idea that we are all special as individuals in a medical sense. Every body is just a body, it's not personal, it's medicine. (Note I do not work in this field).

apismalifica Wed 21-Nov-12 20:55:08

Not at all happy with this as there will always be data security issues and I prefer to keep my totally dull and boring personal health details private. This approach to data sharing/mining has to begin at a point where someone has my name on the record in front of them - who would that be? I would probably stop seeing my GP, and if I thought my records were going to be shared I would never risk confiding anything personal in a medical situation. I have worked in the health service and know a lot of people who would have access to personal records - if I was remotely interesting they could access my details very easily. Not all reasons are innocent or ethical. Sod all the so called safeguards, data are accidentally left on trains, sold to the media and gossiped about. None of my immediate family have allowed our records to be uploaded onto the new electronic records scheme either - having a kid with significant and complex medical problems that require frequent changes in treatment - I wouldn't risk it, too many errors, too easy for medical staff to make assumptions and mistakes to be perpetuated. I also don't want my records to fall into the hands of organizations like insurance companies. If people want medical information about me and my kids they can ask, explain and only get access if I agree after being fully informed about confidentiality and what the purpose of their access request is.

Princesspond Wed 21-Nov-12 21:12:35

I am happy for mine and my children's data to be used anonymously.

I am happy for researchers working for the NHS, university, charity or public-funded research bodies to access personal data. Would be less happy about pharmaceutical companies working independently accessing it.

Most important safeguard the DoH could put in place is ensuring data is anonymised and correct ethical approval. However anonymising data from gp surgeries records and medical records for example is not that straightforward, as some of these records are still on paper. Your name and address can appear in lots of different places on all the forms, letters, results etc. Ideally as all records become electronic software could be used to remove all personal data.

purpleroses Wed 21-Nov-12 21:13:04

- How would you feel about allowing researchers to see the information in your medical records?
No problem with this.

Would you allow them access to your records?
Yes
And how about your child(ren)'s records?
No problem

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
No difference - though I might have slight concerns if they were very local to me - ie if there was a chance that they know me and might guess that they were my records they were looking at. This is unlikely because I don't have anything very distinctive in my records, but might be an issue if I did - eg an unusual disability or illness.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Make all data anonymous before it leaves the GP surgery.

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I am perfectly happy about this. Medical records are an incredibly valuable source of data for researchers. It could be that the answers to many questions in epidemiology are buried somewhere in our medical records. I think it is obtuse and idiotic to object to something so amazingly useful being put to work for our benefit.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Not at all, as long as the results were published regardless of whether the outcome was positive or not and the studies were conducted in an ethical manner.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

A guarantee that the records won't be put on a USB stick that gets left on a train. And that any studies conducted with them are registered correctly, conducted properly and the results published at the end regardless of the outcome. I also think that the resulting journal articles should be publicly and freely available (open access) on the grounds that the initial data was effectively donated to the researchers by the public.

AngelDog Wed 21-Nov-12 23:06:42

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Fine for me & DC.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I'd instinctively say not industry but my main concern would be that the full data/research was available in the public domain eg in professional journals and not kept for the sole benefit of the company doing the research.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Lifelong anonymity, with prior consent only, open access to resulting journal articles.

Blatherskite Thu 22-Nov-12 10:31:46

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would allow access to both mine and my children's data provided it was anonymous. I think if it helps save lives then it is very worthwhile. I give blood and I'm registered to donate bone marrow and my organs when I die, this feels very similar.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I wouldn't appreciate my data being used for advertising or to push an agenda but I'd be happy to be helping research into causes and cures for diseases.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Proper anonymity. The government doesn't have a particularly good history with data confidentiality and I'd want to know that those issues had been resolved.

wellcometrust Thu 22-Nov-12 11:25:58

Thanks to everyone for their posts so far, it's great to have so much interest and debate about the proposed amendments to the NHS Constitution. We've been following the responses that have been posted this week, and will be answering questions that have been raised. Here are answers to some questions raised earlier in the week:

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By madamy, Mon 19th Nov, 17:15
"What I would query is how the researchers would be able to get the information whilst not seeing any identifying details. Who would anonymise the record?"

Good question, madamy. It is not the researchers who anonymise the data: a provider who is legitimately allowed to access the data from patient records provide data to researchers with all identifying information (such as names, dates of birth and addresses) removed.

The Information Commissioner has just published new guidance on how anonymisation can be done and who can do this – the process of anonymisation of patient data for research will need to follow this best practice.
http://www.ico.gov.uk/news/latest_news/2012/~/media/documents/library/Data_Protection/Practical_application/anonymisation_code.ashx

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By colleysmill, Mon 19th Nov, 17:31
"My records are currently being accessed due to my medical and subsequent prescription history. I will be followed for life or until I withdraw my consent to this access. This is via the British dermatolgy register in partnership with University of Manchester.

Can it be explained how this is different?"

Thank colleysmill, your example is interesting, and it’s great that you are contributing to research in this way. The main difference is that you have been asked for consent for your information to be included in the British Dermatology register. Where identifiable information about patients is required, researchers will still be required to gain consent from all patients before their data may be used with the proposed NHS Constitution amendments.

The proposed amendments to the NHS Constitution relate to the use of anonymised data. The amendments clarify that the default position for the use of patient data in health research should be that anonymised data can be used for approved research, without consent. Patients still have the right to object to their data being used, whether these are anonymised or not. This follows from a number of studies that suggest that most patients are fine with their information being used in health research if it is anonymised.

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By gazzalw, 19th Nov, 17:50

“I assumed that this has already been going on for years - am I wrong in thinking this? Is it just that they are now asking our permission to do this!”

You’re right to say that patient information has been used in health research for years, gazzalw. However, the system for accessing information has been very complex and a lot of the data have been locked up in red tape, preventing much-needed research. The proposed amendment to the NHS Constitution is designed to clarify the situation. In situations where identifiable information about patients is required by researchers, explicit consent will still need to be obtained from patients by the researchers. But where anonymised information can be used, the new Constitution more clearly states that researchers should be able to access anonymised information for approved research.

gingercat12 Thu 22-Nov-12 13:14:43

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Yes, as long as they are anonymous.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Yes, it would matter. I have no problem with public universities using my data, but no way would I allow private companies / big pharma any access. They do not share their full research results with universities / the public and try to use Freedom of Information to get details of publicly funded research for free.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

As others said anonimity and prior permission coupled with properly auditable procedures.

orangeshortbread Thu 22-Nov-12 15:19:53

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Yes, but only with permission each time and information about how the data would be used and stored.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I'd be more likely to give permission to university or reputable researchers and it would be good to know what the research is for - eg medical matters rather than financial gain.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

That it can only be used with permission and that it must be clear how it will be stored and how long for.

If it was fully anonymous then I'd support researchers having access.

I would prefer that the researchers are working for Uni's, Gov'ts etc. Not privately owned companies. It shouldn't be something that somebody can make monetary profit from.

It would have to be regulated to within in inch of it's life! I think a governing body would have to be created to deal with such a huge amount of information. Logically, if this information were to become available, the resulting organisation could be as big as DWP. Think of the vast number of jobs created!

jan2013 Thu 22-Nov-12 15:35:18

i have quite a big medical history and it would have to be anonymous, and i would have to know the number of people who would have access to my medical records and for how long they would have the access. same as for my children.

i would also want to know feedback on the research about my medical history, and how my info was used.

MrsHoarder Thu 22-Nov-12 15:39:30

I think that even fully anonymous data should require explicit consent. Without thissome may be reluctant to seek medical treatment knowing that the information that treatment had been sought could be passed on.

Itwillendinsmiles Thu 22-Nov-12 16:19:24

Questions:

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I'd have no concerns with allowing access to my or my children's records.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No different wherever the work was taking place - a lot of university research is possible because of grants made by industry or is industry connected.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Secure technology employed, anonymity assured.

cardamomginger Thu 22-Nov-12 16:25:05

No problem with my info, or my child's info, being used. The usual Research Ethics Committee safeguards would be more than adequate to reassure me.

Dozer Thu 22-Nov-12 21:33:12

I'd be fine for my and my children's information to be used. Wouldn't mind if wasn't told what it was being used for.

HecatePropylaea Thu 22-Nov-12 21:41:13

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records? yes. No problem with this, as long as it was totally anonymous, as it says it will be and there was proper monitoring of it

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place? yes. I would want to know WHY my data was being used. I am more comfortable with it being used for research in a university than, for example, being used in order to do something that ultimately results in profit for a company and that is their motivation, iyswim. I would not be happy for my information to be handed out for someone to make big bucks. I would also not be happy for it to be sold. So if industry is thinking they can buy our info, I would not be part of that.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used? show us that it will be kept safe, kept anonymous and there's no way for it to be misused. Show us the robust procedures that protect it and the people who are employed to ensure that it is kept safe

montiefletcher Fri 23-Nov-12 13:04:33

i would like to know why they wanted it, and what are they particular interested in.

StanleyLambchop Fri 23-Nov-12 14:19:31

I would not be happy for my records or childrens records to be used. I simply do not trust the bodies involved to keep the data safe. There have been several cases of lap tops left on trains, CDs lost in the post.

If a not for profit organisation was to specifically require some data about an aspect of my health as they were researching that particular field then maybe yes, with prior consent. I don't like the idea of all of my health records being made available if they contain areas which have nothing to do with whatever condition is being researched- eg- would details of a miscarriage be revealed to a reseacher of eczema?

I am not in favour of the big pharmecutical companies getting patient data for their research, when they then charge the NHS (and ultimately the patient through prescription charges) massive amounts of money to buy the drugs which they have developed. So do the NHS charge the companies to have access to the data? I don't know, it becomes a difficult issue, that is why I am not comfortable with it.

SantasStrapOn Fri 23-Nov-12 14:25:09

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would be happy for both mine, and my childrens' records to be used, although I would expect my children to be able to make this decision for themselves. I would like the idea that we would be able to contribute to medical advancement, even in this small way.

Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No, provided anonymity and confidentiality were guaranteed, I would not mind who had use of them.

What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Anonymity, confidentiality, and respect for the patient's records that are being used.

Mammahippo Fri 23-Nov-12 14:34:47

I think that in general, annonymous information is fine, and I have no problem with either my own or my child's information being used for research. I don't think that there is much point in drawing big distinctions between academic and (medical) industry research as there's often a significant crossover between universities and the medical/pharmaceutical industry and quality research is reliant upon sources that others can check/scrutinise. I think that if there's a general presumption that medial information could be used, indivdiuals must have an 'opt-out' option made available, and this must be reliably acted upon. I agree with previous posts that raise concerns about how information annonymised and the security of such information. I would be very concerned about information inadvertantly becoming available to companies who may use it to target marketing material or insurance or cosmetics or some other commercial activity. I'm not sure how the DoH could reassure patients about this as the general public can only be confident or not depending on information about it in the press, which only tends to come up when there's a problem! The DoH certainly needs to have stringent safeguards and these need to be regularly reviewed and updated in the light of technological advances.

FairPhyllis Fri 23-Nov-12 23:03:32

Hmm hmm hmm.

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Not happy. It's just too broad. And I say this as someone who has been in a clinical study. It doesn't sound as though there would be any way to control what parts of your records researchers could and couldn't see, or to know what studies your data had been used in. These things might be important to an awful lot of people.

I think I would be especially unhappy about this if I had a condition that was rare enough to make me identifiable. There are plenty of people for whom this is true.

I'd also be concerned about the repercussions of research that was able to predict inherited conditions - my family has already refused to take part in studies into an untreatable disease occurring in our family that probably has a large genetic component. We are worried about individual family members not being able to obtain health insurance in some parts of the world if it was possible to predict through genetic testing that any given individual was going to develop the disease. This is doubly worrying given the way the NHS is going - if we moved over to an insurance system in future, would we be able to get insurance in our own country if research from studies using our records predicted we were going to develop the disease? Would insurance companies ever be able to gain access to our data?

I'd also be unhappy about the idea of the NHS potentially in the future using access to health records for researchers as a source of income. People from all over the world would want to use this data. I can't see the NHS resisting the temptation to use it as a money spinner.

Having actually done human subjects research in a university, and having had to pass university and public ethics committees, I also honestly don't think you'd ever be able to meaningfully consent the public if we're talking about a blanket, for-life consent to any research that might ever be done with their data or how it might ever be stored in the future. I would not be personally happy about consenting people in this way myself because I think there's a good chance the average member of the public is not scientifically literate enough to understand everything that might ever be done with their data or where it might end up. It wouldn't be acceptable in my field for subjects not to be able to trace exactly what pieces of research their data has been used in. So I have serious concerns about the ethics of this form of consent.

I would only allow access to my records if I could control exactly what parts of my records were released, and know which studies the data would be used in. I would then only permit data to be used in wide scale, coarse grained studies like the smoking one. But this is going to be impractical when scaled up to the whole population.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Universities - slightly less bad than industry. But my main concern is about meaningful consent and to what extent you'd be able to control your own information.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

There is really no safeguard you could put in place that would reassure me about this.

helenlynn Fri 23-Nov-12 23:45:16

I'm strongly in favour of researchers in academia and public bodies such as the NHS being allowed fee-free access to anonymised data for me and my child for ethics-committee-approved studies. Since the state pays for the collection and curation of these data, I think there is a case for profit-making organisations (such as pharmaceuticals companies) paying for access to them; however, since it's also desirable for new treatments and new applications of existing treatments . The most important safeguard is the ability to opt out.

helenlynn Fri 23-Nov-12 23:50:57

Rats, knocked ENTER too soon, sorry. Full post:

I'm strongly in favour of researchers in academia and public bodies such as the NHS being allowed fee-free access to anonymised data for me and my child for ethics-committee-approved studies. Since the state pays for the collection and curation of these data, I think there is a case for profit-making organisations (such as pharmaceuticals companies) paying for access to them; however, since it's also desirable for research into new treatments and new applications of existing treatments to take place in the context of the fullest possible information, perhaps there should be a requirement that such organisations exercise due diligence in referring to medical data where there is a reasonable expectation that the data might be relevant to the research. The most important safeguard is the ability to opt out.

apismalifica Sat 24-Nov-12 09:56:20

I find this post very worrying. I agree with FairPhylis and I wonder if people really know what the risks of medical information sharing are. I have a child with a medical condition that is very well controlled but a week in Spain can cost us several hundred pounds in travel insurance for him alone - even though we take EHIC cards etc - this is the extra cost due to having to declare his medical condition! He has a genetic condition which is caused by having inherited 2 genes, one from each of us, and this gene is carried by 1 in 25 of the population!

Insurance companies may end up providing our health care in future, we are moving towards a system like the Americans have already - your history or the genes you carry may make this more expensive or impossible to buy for some people. Do we all really want our medical issues available to fall into the hands of companies with a vested interest in things like our life expectancy or test results, genetic tests etc?

Simple medical observations that mean very little today may in future turn out to be predictive of disease and this information will now be in the system! Imagine it turns out that in 10 years time your childs medical history, which today looks very average, is found in retrospect to predict something that means he or she cannot get life insurance because their risk is too high - there will be a huge pressure from insurance companies to obtain these personal data about us once it's in the system.

You just cannot ethically consent everyone, it is impossible to do this in a safe and totally confidential way where each person is fully informed. I have also worked in a uni and with sensitive data about individuals and have also allowed my child to be part of very specific research projects and trials. I am not against it in principle, just believe that at the present time there are no adequate safeguards and that data are not always as confidential as people assume!

StainlessSteelCat Sat 24-Nov-12 20:03:21

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?
In general, I am very much in favour of helping research and so if seeing my medial records would help, then I would allow it. I would also allow them access to my childrens.
- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
I would expect that there is total anonymity, and so I would not be concerned if the researcher was academic or industry based. However, if the research is being undertaken for commercial reasons (pharmaceutical for example) then I would expect a fee to be paid for the access. This could be used to ensure the highest possible standards of anonymity - checking that takes time, and time=money after all.
- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
I would expect that any medical record is completely anonymous. I would expect that anyone who has access to the records to have been vetted in some way. I woudl expect that the vast majority of research woudl be done by data mining, i.e. a question is posed about , eg the age of onset of a medical condition, and only that information is passed on. I would not expect that complete records woudl be passed over to anyone who asked for them.
I would expect that any IT work would be done to far higher standard than the NHS manages at present.

EmmelineGoulden Sat 24-Nov-12 20:21:24

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

Probably. Would depend on individual circumstances but in general I'm in favour of the idea. Evidence based medicine is good!

Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

Don't know that I care much whether it's a university or in industry. Much university research is funded by industry anyway.

I'd be keener if the results were public and guarenteed to be published (so researchers couldn't just keep taking data sets until they found one that had the results they wanted). Alternatively, any research that was for a company producing proprietary treatments should pay a hefty sum to the NHS.

I would not be happy about my data being use to develop a drug that generates profit for a company without there being some way the monetary benefits of the data the company is given are paid back to us.

What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
I am intrigued by the idea of a data mining intermediary.
Significant (ideally criminal) sanctions for abuse, misuse and loss of data, against management and leadership as well as frontline staff (though would probably have a chilling effect on use of the data). Possibly a zero-tolerance policy against companies found to to have failed (i.e. don't get to use the data again for 10 years). But in any case it would need to be significant - not a toothless (DPAesque) slap on the wrist - an applicable to small losses as well as big.
Contracts that allow for the destruction of all patient data held by outside organizations at the individual's request.
Mainly a culture of respect for patient privacy and data. I think that's the biggest hurdle. Without respect it's just box ticking.

I'd be happy to share my and dc's records. But I do worry that the concept of anonymity is not well explained. If you have a rare disease, that plus age or date of hospital visit would make your record identifiable to a researcher who who already knew you. I think the details of how anonymity will work need to be carefully thought about and even more carefully explained so people can give fully informed consent.

SunshinePanda Sun 25-Nov-12 14:54:50

Happy to give permission to be used anonymously but not necessarily by industry as this would depend on the circumstances.

wellcometrust Mon 26-Nov-12 13:07:41

Thanks to everyone for contributing towards a lively discussion. It’s been very useful for us to hear what Mumsnetters think about the issue and to hear from you why you would allow researchers to access your records or what concerns you may have.

Don’t forget that you can also contribute towards the Department of Health’s consultation at consultations.dh.gov.uk/nhs-constitution-team/nhs-constitution. It’s important to let them know how you feel about allowing researchers to access your data, whether you support or oppose their plans. The deadline for taking part is 28 Jan 2013.

If you’d like to find out more about the work that we do at the Wellcome Trust, you can ‘like’ our Facebook page - https://www.facebook.com/WellcomeTrust - or follows us on Twitter @wellcometrust.

To keep up-to-date with our work around the issue of patient records, please visit our website at www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/index.htm.

We’ll now hand over to Mumsnet to choose the winner in our prize draw!

I have no issue with researchers using the information providing it was anonymous. However there would need to be strict guidance in place and this would need to be regulated tightly.

If it meant that possible medical progress was to be made by accessing the records then I would be in favour.

littlemonkeychops Mon 26-Nov-12 18:25:08

1. My main concern would be anonymity, but provided this could be guaranteed i'd be ok with myvrecords being used, but not my child's.

2. Yes very much it matters, research by universitys etc would be ok but definitely not industry, why should they profig from my personal info?

3. To have a cast iron right to opt-out, no one should have their records used if they expressly don't want them to be.

shriekingnora Mon 26-Nov-12 21:37:08

- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?
Yes, but I am that sort of person. I really don't mind what other people know about me but I might feel differently if there was something embarrassing to know. I am all for helping research and I think I would allow access to my childrens' records.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?
No, because the same safeguards would be in place. I understand that private companies undertake huge amounts of very useful research (my cousin owns a company that does this).

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?
Given that the NHS struggle to keep and retrieve records anyway and seem to lose them at the drop of the hat, it would have to be a pretty special system.

Lotstodo Tue 27-Nov-12 08:53:53

I would be happy for researchers to use my medical records and my children's records anonymously but would not want industries to have access to them. I would worry that this information could get in the wrong hands or be abused if it was too far spread.

lorisparkle Tue 27-Nov-12 12:30:05

How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I am in two minds. I think it is a great idea for developing knowledge but for some reason it makes me feel very uncomfortable. The idea of anonymity is great but interesting to see how this would work. For example you would need age, sex, are where you live, etc to get an accurate picture for comparisons. THere has also been many published reports of information being 'stolen' / lost etc so a great deal of safeguards would have to be in place.

CHildren's information would be just as valuable but I would want them to be told when they reach 16 so they can make a decision if they want to be included or not

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

No

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

Not really sure how you could ensure anonymity whilst making records useful

TheOtherHelenMumsnet (MNHQ) Tue 27-Nov-12 16:58:03

Thanks to all who posted on this thread - I'm pleased to announce the winner of the prize draw is...

carovioletfizz

Congratulations! I'll PM you to get your details

I would have absolutely no problem in my medical records being used for researchers, for the benefit of medical science but not for direct financial gain. As long as they were prevented from being shared without my permission.

fallingandlaughing Wed 28-Nov-12 16:18:04

This could be a case of opening the floodgates IMO.

Data can't be truly anonymised - someone has to do this, I would be happy about giving anyone a free rein to nose through check my records.

There are other ways of doing this e.g. pregnancy registries.

BadMissM Wed 28-Nov-12 16:38:46

Questions:
- How would you feel about allowing researchers to see the information in your medical records? Would you allow them access to your records? And how about your child(ren)'s records?

I would have no problems with them using the data on mine or children's records, especially if this is used to research conditions, whether they have been carried, etc.

- Would it matter to you where the researchers work i.e. for a University or industry, if the same safeguards about anonymity and confidentiality were in place?

I would prefer that they were used by academics, but would hope that if they were passed to industry they would be sufficiently anonymised.

- What do you think is the most important safeguard for the Department of Health to put in place to reassure patients about information from their medical records being used?

A campaign of information showing examples of what they would use and why, and explaining who would anonymise them

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