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

[MrsHoarder]

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]

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]

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]

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]

• 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]

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

[StanleyLambchop]

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]

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]

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]

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]

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]

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]

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]

• 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]

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.

[MamaChocoholic]

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]

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

[wellcometrust]

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 - 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!

[midnightinmoscow]

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]

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.
   

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

1. 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]

• 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]

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]

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]

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

[ClutchingPearls]

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.