New data collection service could ‘destroy’ patient trust
- 27 May 2021
A proposed new data collection service designed to give planners and researchers faster access to patient information could “potentially destroy” trust in the NHS.
NHS Digital announced on 12 May it was launching a new service, called the General Practice Data for Planning and Research (GPDPR), which would provide access to pseudonymised patient information.
The organisation has issued a Data Provision Notice (DPN) to GPs to enable the new data collection process to begin from 1 July 2021, after being legally directed by the secretary of state for health and social care.
The organisation has issued a Data Provision Notice (DPN) to GPs to enable the new data collection process to begin from 1 July 2021, after being legally directed by the secretary of state for health and social care.
However, alarm bells have begun to ring with some expressing concern over patient trust and how the information is stored. Others pointed to the six-week timeframe GPs were given to prepare for the new service, including informing their patients of the changes.
Phil Booth from MedConfedential told Digital Health News that patient trust “needs to be preserved” and was concerned this new service could “potentially destroy” it.
He said he believes NHS Digital should “pause and rethink” the service in order to help safeguard patient trust.
Booth added that every person in the UK should be sent a letter informing them of the changes, as well as assurances made that no copies of people’s data will be stored. Finally he believes there should be total transparency about who is using the data and for what purpose.
When asked what should happen next, Booth told Digital Health News he “hopes common sense will prevail” and that the DPN is withdrawn.
GP Dr Neil Bhatia has also expressed concerns, believing this could be “care.data part 2”.
The care.data programme was first approved in 2012 as an ambitious project to expand the Hospital Episode Statistics and to link them to other data sets, starting with GP data, and to make this available to researchers and others.
It quickly came under heavy criticism for confusion over what the data would be used for and how patients could opt out, including suggestions that the psuedonymised data could be sold to insurers and marketing companies.
The programme was eventually scraped in 2016 following the release of the Caldicott review.
Dr Bhatia told Digital Health News that this new service is “far worse and far more extensive” than care.data and was critical of the six-week’s notice given to GPs, adding it felt as if the service had been “rushed out”.
He also expressed concerns that fellow GPs would not have enough time to let their patients know about the changes.
“How can GPs let all their patients know in the middle of a pandemic. The right for patients to be informed is never going to be upheld,” he said.
“They could have waited until September, there is no rush to do this now and it would have given people enough time to understand. They can’t afford for this to fail again.”
Dr Bhatia also urged that NHS Digital “should be transparent” and said there was “no excuses” this time.
In response, NHS Digital pointed out that GPs already share data with other organisations for planning and research purposes using their own agreements, and that patients have had the opportunity to opt out of this type of sharing for several years using the Type 1 Opt Out.
They also confirmed that it has provided support and materials to GPs in order for them to inform patients about the service which contains information about how patients can opt out. You can see NHS Digital’s full statement below.
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An NHS Digital spokesperson said: “Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives.
“During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect those most vulnerable, roll out our world leading vaccine programme, and identify hospital treatments which have prevented people dying from Covid.
“We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.
“We take our responsibility to safeguard patient data extremely seriously. Researchers wanting to access this data will need each request to be approved by the Independent Group Advising on the Release of Data (IGARD) and a GP Professional Advisory Group (PAG), with representatives from the British Medical Association and the Royal College of General Practitioners.”
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6 Comments
Initial questions to NHS Digital
“During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect those most vulnerable, roll out our world leading vaccine programme, and identify hospital treatments which have prevented people dying from Covid.
Q: Was this data shared in the same way that are now proposed?
If so, under what legal or other regulations was this done?
“We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data.
Q: Will you make these discussions, reports and recommendations immediately public and pause the planned go live of 1st July until members of the public and others have had time to scrutinise and respond to them? If not why not?
Q: Which groups representing patients have been involved in discussions to date?
“We take our responsibility to safeguard patient data extremely seriously. Researchers wanting to access this data will need each request to be approved by the Independent Group Advising on the Release of Data (IGARD) and a GP Professional Advisory Group (PAG), with representatives from the British Medical Association and the Royal College of General Practitioners.”
Q: Which patient groups are represented on IGARD, and how were they selected and appointed?
Q: What is the process for members of the public to raise issues and concerns with IGARD, and how is the process being made public?
There is nothing “potential” about the destruction of trust by NHS Digital’s proposal to collect GP Data for Planning and Research, under a Directive from the Secretary of State for Health and Social Care. Before it has even happened, it confirms and strengthens every single reason we already have for trusting neither the DHSC nor NHS Digital, and the reasons are many.
The attempt of NHS Digital to pretend that this new initiative is quite different from Care.data – in some way that should make us trust it, is completely pathetic. They are employing all the tired old deceptions and duplicity with which we are completely familiar. The only difference is that the collection of GPDPR is a far greater violation of our right to confidentiality and a far greater violation of the legal requirements for lawful, fair and transparent processing. Allow them to get away with an inch and they immediately try to help themselves to a hundred miles. Clearly the collusion of the ICO is a sine qua non, if the new data grab is to go ahead. The whole thing is an absolute disgrace and is only possible because NHS patients are being denied any means of redress against anything the DHSC or NHS Digital choose to impose on them.
National HS Digital make sense, tech is a people business, whoever U R Bertl you would do well to remember tech is a people business, there is no point in having a go @ NHS D, you need tobe more directt and name people and projects, National HS Digital makes sense and NHS D needs more power ! MH is mentioned but please do some reserach and let us have some more accountability, some more names ps I am not saying I agree with U or not but I am convinced the anon DATA needs to be opened up just as much as the public code !
I only use anonymity on the internet, to protect my privacy, and this forum is not a place where I can present a detailed case with evidence. In this context one can only express an opinion. I have spent more than five years doing research and presenting a very detailed case with evidence. With my signature on it, I sent it to all relevant NHS bodies, the ICO, the Parliamentary and Health Service Ombudsman and the Ministry of Justice, who referred me to the DHSC, who referred me to the Citizen’s Advice Bureau!! If you challenge Government health policy you are simply ignored. They do not want to know. The only responses I get never address the issues I have raised.
If you are so sure that tech is people business, you might consider John Naughton’s recent article in The Guardian, which I think is very much to the point. You will find it at https://www.theguardian.com/commentisfree/2021/may/29/data-oil-metaphor-tech-companies-surveillance-capitalism .
I really think that a large part of the problem is that tech business is NOT people business, It operates on a presumption of entitlement to treat personal data as a commodity to be mined, without regard to the fact that the data represents someone’s life.
It won’t destroy my trust. My trust was destroyed long ago
I feel there is a lack of balance in this article as it fails to identify the lost opportunities that are associated with the current state, which is secure via its cumbersome nature but hampers any real initiatives that need system wide information.
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