It can't be said enough, we need to encourage more people to agree to have their health data made available for research. Well done for volunteering, and promoting this.
I'm not a privacy campaigner although I have been working in this field for some years which has helped provide a perspective on the value of healthcare data to the NHS, DHSC, Local Government and external healthcare organisations. So in principle, I'm all for sharing relevant Covid-19 survey data and health information with the ONS which is looking at the spread of the virus in communities with the aim of forecasting future healthcare requirements.
However, when I see an ONS statements such as "Information that can identify you will only be held by the ONS and IQVIA for the purposes of the study", it sets alarm bells ringing. There is very little information on what personal or health information this external US data science company has access to or what permissions they have been given by ONS or indeed the NHS on what they can do with it.
The ONS survey shouldn't be conflated with the recent NHS care.data lookalike that was poorly constructed and badly publicised last year. The reasons it failed and was shelved was because the prospect of sharing data with external, unspecified organisations didn't offer sufficient safeguards i.e. the true anonymisation of records. It also offered a very short timescale within which individuals had to decide to remain in or opt out of a proposal which provided little information on what might be shared and with whom.
Covid-19 has provided an opportunity for data harvesting, the like of which we have never seen before. But as we've seen with the purchases of PPE and the government's own VIP lane, some actions have been taken in the public interest which in itself is not a bad thing but is easily corrupted. Public interest doesn't obviate the need to maintain safeguards over the privacy of individual healthcare data which has a value beyond that of the analysis of anonymised healthcare data.
How many of us scoffed at those who warned about the intrusion of Facebook into manipulating the minutiae of our personal lives to generate billions in profits at our expense?
Healthcare data is even more valuable and we make it freely available at our peril.
Great to get a mention for statisticians - we've often been left out of the research reports over the past 2 years. Thank you.
I don't understand how the survey you are enrolled in will track how many people you passed the virus on to.
This bit is not quite true:
"It also wants to look back as far as January 2016 at their health data to make sure it can take account of any health conditions they had before entering the study."
If they are using GP data they will be able to take account of conditions you had before you entered the study if they had been recorded by the GP. However, there is a lot of missing data in the primary care electronic patient record - letters from hospitals may be scanned and then attached to the electronic patient record but the information is not always transferred to the data. So the GP can see the letter when a patient goes for an appointment by clicking on the PDF but a data extract might not contain all the relevant data.
+1 on the NHS using my data for research like this. It's exactly what is going to drive the healthcare industry forward. I was pleased to receive this email and am looking forward to hearing about the results in the years to come.
It can't be said enough, we need to encourage more people to agree to have their health data made available for research. Well done for volunteering, and promoting this.
I'm not a privacy campaigner although I have been working in this field for some years which has helped provide a perspective on the value of healthcare data to the NHS, DHSC, Local Government and external healthcare organisations. So in principle, I'm all for sharing relevant Covid-19 survey data and health information with the ONS which is looking at the spread of the virus in communities with the aim of forecasting future healthcare requirements.
However, when I see an ONS statements such as "Information that can identify you will only be held by the ONS and IQVIA for the purposes of the study", it sets alarm bells ringing. There is very little information on what personal or health information this external US data science company has access to or what permissions they have been given by ONS or indeed the NHS on what they can do with it.
The ONS survey shouldn't be conflated with the recent NHS care.data lookalike that was poorly constructed and badly publicised last year. The reasons it failed and was shelved was because the prospect of sharing data with external, unspecified organisations didn't offer sufficient safeguards i.e. the true anonymisation of records. It also offered a very short timescale within which individuals had to decide to remain in or opt out of a proposal which provided little information on what might be shared and with whom.
Covid-19 has provided an opportunity for data harvesting, the like of which we have never seen before. But as we've seen with the purchases of PPE and the government's own VIP lane, some actions have been taken in the public interest which in itself is not a bad thing but is easily corrupted. Public interest doesn't obviate the need to maintain safeguards over the privacy of individual healthcare data which has a value beyond that of the analysis of anonymised healthcare data.
How many of us scoffed at those who warned about the intrusion of Facebook into manipulating the minutiae of our personal lives to generate billions in profits at our expense?
Healthcare data is even more valuable and we make it freely available at our peril.
Great to get a mention for statisticians - we've often been left out of the research reports over the past 2 years. Thank you.
I don't understand how the survey you are enrolled in will track how many people you passed the virus on to.
This bit is not quite true:
"It also wants to look back as far as January 2016 at their health data to make sure it can take account of any health conditions they had before entering the study."
If they are using GP data they will be able to take account of conditions you had before you entered the study if they had been recorded by the GP. However, there is a lot of missing data in the primary care electronic patient record - letters from hospitals may be scanned and then attached to the electronic patient record but the information is not always transferred to the data. So the GP can see the letter when a patient goes for an appointment by clicking on the PDF but a data extract might not contain all the relevant data.
+1 on the NHS using my data for research like this. It's exactly what is going to drive the healthcare industry forward. I was pleased to receive this email and am looking forward to hearing about the results in the years to come.