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

[TheOtherHelenMumsnet]

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

[Dru77]

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]

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]

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]

• 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]

• 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]

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]

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]

• 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]

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]

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]

Doh *wouldn't mind!!!

[ohmeohmy]

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.

[SquirtedPerfumeUpNoseInBoots]

• 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.

[BitBewildered]

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]

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]

• 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]

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]

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.

[KeemaNaanAndCurryOn]

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]

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

[MrsHoarder]

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.

[ThePortlyPinUp]

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]

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]

• 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]

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.