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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

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