Many thanks Rory for again highlighting this issue.
I expect the conference will also have discussed the privacy concerns around the sharing of patient data which were at the core of the problems with care.data and latterly, its recent reincarnation as the confusingly named GPDPR.
As you stress, patient data has incredible value to a wide variety of interests, especially patients themselves. However, such sensitive personal data does require extensive safeguards to ensure it can't be exploited by less well-intentioned organisations (simplistic example travel insurance).
Neither care.data or GPDPR offered those basic safeguards which would have ensured personal information could not be exposed or traced back to individual patients, and both schemes have only served to undermine trust.
Like many (most?) other chronically ill patients, I fully support the sharing of patient data for research and development and I'll be at the front of the queue when those safeguarding measures are in place.
I agree. I happily take part in UK Biobank studies and various other studies, mainly arising from Dementia Research UK. Although I was relatively happy back in the day for my GP-held data to be shared, it felt less secure because I didn't and wouldn't know where and when and for what purpose my data had been shared. UK Biobank and Dementia Research feels much more focussed and safer in relation to my personal details - I know, for instance, it wouldn't be shared with an insurance company.
Couldn’t agree more! But of course I’ve had to get into my 60s and develop some chronic conditions before I realised how important this issue is. Doing my bit now through the organisation called useMydata.
You are right and communication is the key here. Having spent a large chunk of my career recording voice overs for medical-based videos (non-tv) for all kinds of reasons, the one thing I was certain about was that scientists can be terrible communicators. We were in right trouble if they had had a hand in the script. (And some of the "technical writers" were no better.)
GPs, who's main job is to communicate, can be equally as bad. Many of the GP-targeted Talking Medicine programmes we made with Sarah Jarvis were about communication and how not to make a complete mess of it.
Add to that the complex contradiction of data access vs data protection, and there may be trouble ahead!
I think to a certain extent, the data-keepers, the NHS et al, were caught out by not predicting public reaction.
They assumed that since the public already unwittingly shared all their car licencing data with any company prepared to sign up to the system (this is the system that allows them to see from your number plate everything about your car), they would be perfectly happy to share what is probably the most sensitive and private data imaginable.
And the people who are asking, doctors, are the very same people who are obliged to PROTECT patient confidentiality.
"Dear Patient, as your GP I am wholly committed to patient confidentiality, so can I ask you to sign this form so I can pass all your data to this nice man over here from a private company? No, I am not sure what he is going to do with it, but I can assure you he is very nice."
To make it worse, the request was made against a background where people were fast discovering that their data was getting leaked or stolen everywhere.
That the data would be "made anonymous" just confused people. Is anonymous an absolute? Are their grades of anonymous? At which point does the idea of being made anonymous fall apart because there are enough bits of anonymous data grouped together to suddenly make an accurate "painting by numbers" picture?
You end up with the paradoxical statement:
"Dear Mr Hogan, your data has been anonymised."
I am fully supportive of using data (specifically chosen and not a free for all) to help research, but I can understand the concerns too. "Data security" is fast becoming an oxymoron.
We are talking about the NHS who created a website to help junior doctors find job positions, exported the data to a CSV file, then left the file in a public facing directory where anyone on the planet could look at it!
That was back in 2007.
I am afraid that the shooting-in-the-foot exercise that has led to our present predicament started a long time ago.
Another Biobank lab-rat here. For me the issue is that there are too many organisations dealing with access to patient data. Who do I go to in order to elect to share my data or indeed change my mind?
I chose to join Biobank, I'm confident in their data security and of the ethics driving them.
The big problem I have is not knowing how, at a local level, my GP surgery is sharing my data, how anonymous it is, if at all and which companies or research institutions are involved. My GP surgery is a failing group practise, with high staff turnover, that has been put into special measures. So I have very little confidence that even they know how my data is being used.
Many thanks Rory for again highlighting this issue.
I expect the conference will also have discussed the privacy concerns around the sharing of patient data which were at the core of the problems with care.data and latterly, its recent reincarnation as the confusingly named GPDPR.
As you stress, patient data has incredible value to a wide variety of interests, especially patients themselves. However, such sensitive personal data does require extensive safeguards to ensure it can't be exploited by less well-intentioned organisations (simplistic example travel insurance).
Neither care.data or GPDPR offered those basic safeguards which would have ensured personal information could not be exposed or traced back to individual patients, and both schemes have only served to undermine trust.
Like many (most?) other chronically ill patients, I fully support the sharing of patient data for research and development and I'll be at the front of the queue when those safeguarding measures are in place.
I agree. I happily take part in UK Biobank studies and various other studies, mainly arising from Dementia Research UK. Although I was relatively happy back in the day for my GP-held data to be shared, it felt less secure because I didn't and wouldn't know where and when and for what purpose my data had been shared. UK Biobank and Dementia Research feels much more focussed and safer in relation to my personal details - I know, for instance, it wouldn't be shared with an insurance company.
Couldn’t agree more! But of course I’ve had to get into my 60s and develop some chronic conditions before I realised how important this issue is. Doing my bit now through the organisation called useMydata.
You are right and communication is the key here. Having spent a large chunk of my career recording voice overs for medical-based videos (non-tv) for all kinds of reasons, the one thing I was certain about was that scientists can be terrible communicators. We were in right trouble if they had had a hand in the script. (And some of the "technical writers" were no better.)
GPs, who's main job is to communicate, can be equally as bad. Many of the GP-targeted Talking Medicine programmes we made with Sarah Jarvis were about communication and how not to make a complete mess of it.
Add to that the complex contradiction of data access vs data protection, and there may be trouble ahead!
I think to a certain extent, the data-keepers, the NHS et al, were caught out by not predicting public reaction.
They assumed that since the public already unwittingly shared all their car licencing data with any company prepared to sign up to the system (this is the system that allows them to see from your number plate everything about your car), they would be perfectly happy to share what is probably the most sensitive and private data imaginable.
And the people who are asking, doctors, are the very same people who are obliged to PROTECT patient confidentiality.
"Dear Patient, as your GP I am wholly committed to patient confidentiality, so can I ask you to sign this form so I can pass all your data to this nice man over here from a private company? No, I am not sure what he is going to do with it, but I can assure you he is very nice."
To make it worse, the request was made against a background where people were fast discovering that their data was getting leaked or stolen everywhere.
That the data would be "made anonymous" just confused people. Is anonymous an absolute? Are their grades of anonymous? At which point does the idea of being made anonymous fall apart because there are enough bits of anonymous data grouped together to suddenly make an accurate "painting by numbers" picture?
You end up with the paradoxical statement:
"Dear Mr Hogan, your data has been anonymised."
I am fully supportive of using data (specifically chosen and not a free for all) to help research, but I can understand the concerns too. "Data security" is fast becoming an oxymoron.
We are talking about the NHS who created a website to help junior doctors find job positions, exported the data to a CSV file, then left the file in a public facing directory where anyone on the planet could look at it!
That was back in 2007.
I am afraid that the shooting-in-the-foot exercise that has led to our present predicament started a long time ago.
Another Biobank lab-rat here. For me the issue is that there are too many organisations dealing with access to patient data. Who do I go to in order to elect to share my data or indeed change my mind?
I chose to join Biobank, I'm confident in their data security and of the ethics driving them.
The big problem I have is not knowing how, at a local level, my GP surgery is sharing my data, how anonymous it is, if at all and which companies or research institutions are involved. My GP surgery is a failing group practise, with high staff turnover, that has been put into special measures. So I have very little confidence that even they know how my data is being used.
Though it might be interesting to ask them.