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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

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.

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