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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

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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