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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

Solopower1 Wed 21-Nov-12 16:16:16

So anyway, here are my answers to your questions:

- How would you feel about allowing researchers to see the information in your medical records?
I don't know. I would have to know who they were and why they wanted it.

Would you allow them access to your records? See above.

And how about your child(ren)'s records? See 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?

Yes, it would matter very much indeed.

- 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?

To give us the responsibility for agreeing or not. That means telling us when someone wants our medical details and supplying us with all the necessary information for us to make an informed choice.

Or you could give us custody of our own records, in which case the companies doing research would have to contact us directly.

NightLark Wed 21-Nov-12 16:25:05

- 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'm more than happy for them to be used for research. I am deeply concerned about the trend at the moment to seek informed consent for every use of records - the differences between those who consent and those who don't stand every chance of scuppering valid population based research.

- 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 have a strong gut reaction against them being used for industry. I can;t understand why information collected by the NHS (and thus funded by the taxpayer) should be given to industry for the benefit of industry. The profit motive gets in the way for me.

- 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 - assurances that all data will be anonymous and, once released for research, cannot be traced back to an individual.

Solopower1 Wed 21-Nov-12 16:26:43

Thank you, Dru 77, for the links. I had no idea this was allowed by law:

'Even though it is allowed under law for us to have access to anonymised data we offer patients the right to opt out from the use of their anonymised data. GP practices that are part of the CPRD data system can mark your data as, not to be used, even in an anonymised form, for CPRD research projects. Over the last 7 years we are aware that very, very few patients decide not to let their anonymised data be used for what are very important public health reasons- improved, effective and safe treatments.'

I have never been asked by my GP whether I would like to opt out of the use of my anonymised data - and if that is the same for others, that could be the reason that very few patients object.

neriberi Wed 21-Nov-12 16:32:07

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?

They are more than welcome to my records as long as my details remain anonymous and consent has been sought. I have a really rare genetic condition and regularly offer myself up for studies so I have no problem with this. And I have no problem with my child's records being used either as long as the details remain anonymous.

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 the same safeguards, anonymity and confidentiality procedures were in place it wouldn't matter.

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?
Seeking permission to use the records and the guarantee of anonymity.

MissMI5 Wed 21-Nov-12 17:19:55

I wouldn't mind sharing my personal health records or my children's if this was for medical research purposes. If private companies were sold the information and started using them for other purposes then I wouldn't agree to that.

My worry would be that those who handle the data may make genuine mistakes and potentially expose our identity or other details such address, phone numbers etc.
For example, the council was sending out some info the other day and the officer in change of sending out the information shared our contacts details with the whole mailing list. That's human error, yet it can cause serious damage.

Ideally the information would have to be stored in a database that extrapolates info on patients' medical conditions from GPs without taking the name of the patient. It's an ambitious project and I'm not sure the resources would be there to do that.

So in principle I agree that sharing information would be extremely useful, I worry about the practicalities attached to that process!

Punkatheart Wed 21-Nov-12 17:33:37

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?

The anon element is important so yes, I would allow access. In perverse logic, I would not allow access to my daughter's records. However, when she is old enough, of course I would let her make that decision.

- 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, as long as animal testing was not involved directly.

- 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?

Really - the identity is paramount. Not to be left on a memory stick on a 'bus.

NettleTea Wed 21-Nov-12 18:03:35

I have no problem with mine, or my children's, records being used annonymously for medical research so long as it is for the public benefit, or student research.
Not happy with big companies who are going to make huge profits or expensive drugs which stand little chance of being made available for those who need them.

k4mi Wed 21-Nov-12 18:07:56

- 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 not mind as long as i could get a guarantee in writing that they would be anonymous. I would prefer it was just me and not my daughter though I think because eventually that would be her choice.

- 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 only really want to provide my information for non profit companies / government research and not privately owned medical firms. I would not mind for Universities as long as it was being used for medical training.

- 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 name and address on all records and NHS/NI no etc through which it could be traced?

carovioletfizz Wed 21-Nov-12 19:33:50

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 problem with this for my records 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, if the same safeguards applied.
- 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? That the most stringent and robust security is in place to protect all records, from a provider with a solid history in this area.

Snog Wed 21-Nov-12 19:40:25

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 like to be asked for specific permission on each occaision and to have full information about the research
- 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 be more likely to give access to my records to not for profit organisations
- 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?That they must give specific permission on every single occaision

Lifeisontheup Wed 21-Nov-12 19:46:43

- 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 I have no problem in accepting treatment which is research based it would be hypocritical not to allow access to my records for other people to benefit in the same way. The same goes for my children.

- 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, a lot of research has to be funded by big companies as they are the only people to have the funds.

- 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.

hobnob57 Wed 21-Nov-12 19:57:59

I think it is vitally important for epidemiological studies that our data should be made available on a population basis. However, the issue of anonymity is an important one and the safeguards against selling information or unauthorised access are paramount and difficult to make watertight. On balance I'd rather take the risk and make mine and my children's records available. As others have said, the issue of industry access is bittersweet as they do provide a lot of better-funded, important work which does provide us with a lot of benefits. However, they should pay for access and publish all results, not just those that are in the self-interest of the company so that all research in that particular area can be informed.

leftangle Wed 21-Nov-12 20:04:43

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?

If records are anomymised quite happy for researchers to access my data and my childs.

- 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?

Universtity fine, if industry would like guarantees that results of any study be published - good bad or neutral.

- 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?
Allowing patients to see them and discuss confidentially if there are things that should be changed (patients should not have the right for them to be changed, only for inaccuracys).

MrsDeVere Wed 21-Nov-12 20:27:55

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?

My daughter's records have been used in a number of studies and also one of my son's. My daughter gave her consent (she was 12-14) and I am happy for her case to be used now she is dead if it can help other families. My son was not capable of giving consent so I took the decision as his parent. Whether or not I would be happy to give consent for my records to be used would depend on a number of factors.

- 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 only be happy for my records to be used by non-profit making organisations.

- 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?
Informed consent MUST be given and total anonymity MUST be guaranteed

jimmenycricket Wed 21-Nov-12 20:47:56

I've no objection whatsoever to the information sharing with researchers. Our local hospital is a teaching hospital and they do a lot of work collecting samples/info for research purposes. It's good. They've developed some amazing procedures because people were willing to let their anonymised info be used to collate data and solve problems.

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?

Rather researchers than GP receptionists frankly. At least the former are doing it with some training! I don't think medical records are that interesting or valuable to individual people. I don't actually care if someone reads I once had piles if it means that twenty years down the track, someone cures cancer.

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, don't care. This happens currently.

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 think the anonymisation process needs clarification but I don't think opt out should be possible. You use the NHS, it's a public service ergo the info it creates is public (apart from the personal identifiers). We need to get away from this stupid idea that we are all special as individuals in a medical sense. Every body is just a body, it's not personal, it's medicine. (Note I do not work in this field).

apismalifica Wed 21-Nov-12 20:55:08

Not at all happy with this as there will always be data security issues and I prefer to keep my totally dull and boring personal health details private. This approach to data sharing/mining has to begin at a point where someone has my name on the record in front of them - who would that be? I would probably stop seeing my GP, and if I thought my records were going to be shared I would never risk confiding anything personal in a medical situation. I have worked in the health service and know a lot of people who would have access to personal records - if I was remotely interesting they could access my details very easily. Not all reasons are innocent or ethical. Sod all the so called safeguards, data are accidentally left on trains, sold to the media and gossiped about. None of my immediate family have allowed our records to be uploaded onto the new electronic records scheme either - having a kid with significant and complex medical problems that require frequent changes in treatment - I wouldn't risk it, too many errors, too easy for medical staff to make assumptions and mistakes to be perpetuated. I also don't want my records to fall into the hands of organizations like insurance companies. If people want medical information about me and my kids they can ask, explain and only get access if I agree after being fully informed about confidentiality and what the purpose of their access request is.

Princesspond Wed 21-Nov-12 21:12:35

I am happy for mine and my children's data to be used anonymously.

I am happy for researchers working for the NHS, university, charity or public-funded research bodies to access personal data. Would be less happy about pharmaceutical companies working independently accessing it.

Most important safeguard the DoH could put in place is ensuring data is anonymised and correct ethical approval. However anonymising data from gp surgeries records and medical records for example is not that straightforward, as some of these records are still on paper. Your name and address can appear in lots of different places on all the forms, letters, results etc. Ideally as all records become electronic software could be used to remove all personal data.

purpleroses Wed 21-Nov-12 21:13:04

- How would you feel about allowing researchers to see the information in your medical records?
No problem with this.

Would you allow them access to your records?
Yes
And how about your child(ren)'s records?
No problem

- 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 difference - though I might have slight concerns if they were very local to me - ie if there was a chance that they know me and might guess that they were my records they were looking at. This is unlikely because I don't have anything very distinctive in my records, but might be an issue if I did - eg an unusual disability or illness.

- 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?
Make all data anonymous before it leaves the GP surgery.

- 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 perfectly happy about this. Medical records are an incredibly valuable source of data for researchers. It could be that the answers to many questions in epidemiology are buried somewhere in our medical records. I think it is obtuse and idiotic to object to something so amazingly useful being put to work for our benefit.

- 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?

Not at all, as long as the results were published regardless of whether the outcome was positive or not and the studies were conducted in an ethical manner.

- 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 guarantee that the records won't be put on a USB stick that gets left on a train. And that any studies conducted with them are registered correctly, conducted properly and the results published at the end regardless of the outcome. I also think that the resulting journal articles should be publicly and freely available (open access) on the grounds that the initial data was effectively donated to the researchers by the public.

AngelDog Wed 21-Nov-12 23:06:42

- 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 & DC.

- 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'd instinctively say not industry but my main concern would be that the full data/research was available in the public domain eg in professional journals and not kept for the sole benefit of the company doing the 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?

Lifelong anonymity, with prior consent only, open access to resulting journal articles.

Blatherskite Thu 22-Nov-12 10:31:46

- 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 allow access to both mine and my children's data provided it was anonymous. I think if it helps save lives then it is very worthwhile. I give blood and I'm registered to donate bone marrow and my organs when I die, this feels very similar.

- 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 wouldn't appreciate my data being used for advertising or to push an agenda but I'd be happy to be helping research into causes and cures for diseases.

- 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?

Proper anonymity. The government doesn't have a particularly good history with data confidentiality and I'd want to know that those issues had been resolved.

wellcometrust Thu 22-Nov-12 11:25:58

Thanks to everyone for their posts so far, it's great to have so much interest and debate about the proposed amendments to the NHS Constitution. We've been following the responses that have been posted this week, and will be answering questions that have been raised. Here are answers to some questions raised earlier in the week:

--
By madamy, Mon 19th Nov, 17:15
"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?"

Good question, madamy. It is not the researchers who anonymise the data: a provider who is legitimately allowed to access the data from patient records provide data to researchers with all identifying information (such as names, dates of birth and addresses) removed.

The Information Commissioner has just published new guidance on how anonymisation can be done and who can do this – the process of anonymisation of patient data for research will need to follow this best practice.
http://www.ico.gov.uk/news/latest_news/2012/~/media/documents/library/Data_Protection/Practical_application/anonymisation_code.ashx

--
By colleysmill, Mon 19th Nov, 17:31
"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?"

Thank colleysmill, your example is interesting, and it’s great that you are contributing to research in this way. The main difference is that you have been asked for consent for your information to be included in the British Dermatology register. Where identifiable information about patients is required, researchers will still be required to gain consent from all patients before their data may be used with the proposed NHS Constitution amendments.

The proposed amendments to the NHS Constitution relate to the use of anonymised data. The amendments clarify that the default position for the use of patient data in health research should be that anonymised data can be used for approved research, without consent. Patients still have the right to object to their data being used, whether these are anonymised or not. This follows from a number of studies that suggest that most patients are fine with their information being used in health research if it is anonymised.

--
By gazzalw, 19th Nov, 17:50

“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!”

You’re right to say that patient information has been used in health research for years, gazzalw. However, the system for accessing information has been very complex and a lot of the data have been locked up in red tape, preventing much-needed research. The proposed amendment to the NHS Constitution is designed to clarify the situation. In situations where identifiable information about patients is required by researchers, explicit consent will still need to be obtained from patients by the researchers. But where anonymised information can be used, the new Constitution more clearly states that researchers should be able to access anonymised information for approved research.

gingercat12 Thu 22-Nov-12 13:14:43

- 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, as long as they are anonymous.

- 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. I have no problem with public universities using my data, but no way would I allow private companies / big pharma any access. They do not share their full research results with universities / the public and try to use Freedom of Information to get details of publicly funded research for free.

- 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?

As others said anonimity and prior permission coupled with properly auditable procedures.

orangeshortbread Thu 22-Nov-12 15:19:53

- 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 only with permission each time and information about how the data would be used and stored.

- 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'd be more likely to give permission to university or reputable researchers and it would be good to know what the research is for - eg medical matters rather than financial gain.

- 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?

That it can only be used with permission and that it must be clear how it will be stored and how long for.

If it was fully anonymous then I'd support researchers having access.

I would prefer that the researchers are working for Uni's, Gov'ts etc. Not privately owned companies. It shouldn't be something that somebody can make monetary profit from.

It would have to be regulated to within in inch of it's life! I think a governing body would have to be created to deal with such a huge amount of information. Logically, if this information were to become available, the resulting organisation could be as big as DWP. Think of the vast number of jobs created!

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