You Have To Worry Just What Is Going On With This Collection Of GP Data.

This appeared a day or so ago:

GPDPR September implementation date is scrapped

The implementation date of the GP Data for Planning and Research (GPDPR) programme has been scrapped and instead data collection will now only begin once certain criteria have been met.

Hanna Crouch – 20 July 2021

Originally planned to go live from 1 July 2021, concerns were raised about the programme and eventually led to the implementation date being moved to September.

However it looks like this date has now been scrapped as the minister for primary care and health promotion, Jo Churchill, sent a letter to all GP’s on 19 July which set out a new process for commencing data collection.

“While we are continuing to work on the infrastructure, and communication for the project, we are not setting a specific start date for the collection of data,” the letter states.

Instead, data will only begin to be uploaded when the following is in place:

• the ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded;
• the backlog of opt-outs has been fully cleared;
• a Trusted Research Environment has been developed and implemented;
• patients have been made more aware of the scheme through a campaign of engagement and communication.

Churchill’s letter also delves into the opt-out process, saying “we want to make the position around opt-out much simpler”.

“While 1st September has been seen by some as a cut-off date for opt-out, after which data extraction would begin, I want to reassure you that this will not be the case and data extraction will not commence until we have met the tests,” it adds.

As a result, three changes will be introduced to the opt-out system, they are:

• Patients do not need to register a Type 1 opt-out by 1st September to ensure their GP data will not be uploaded;
• NHS Digital will create the technical means to allow GP data that has previously been uploaded to the system via the GPDPR collection to be deleted when someone registers a Type 1 opt-out;
• The plan to retire Type 1 opt-outs will be deferred for at least 12 months while we get the new arrangements up and running, and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian.

On the issue of data security and governance, Churchill’s letter confirms that the “government has committed that access to GP data will only be via a Trusted Research Environment (TRE) and never copied or shipped outside the NHS secure environment, except where individuals have consented to their data being accessed e.g. written consent for a research study”.

“This is intended to give both GPs and patients a very high degree of confidence that their data will be safe and their privacy protected,” the letter adds.

This TRE will be built in “line with best practice developed in projects, such as OpenSAFELY and the Office for National Statistics’ Secure Research Service”, Churchill confirmed and data collection will only begin once this is in place.

“We will ensure that the BMA [British Medical Association], RCGP [Royal College of GPs] and the National Data Guardian have oversight of the proposed arrangements and are satisfied with them before data upload begins,” the letter states.

“I can also confirm that the previously published Data Provision Notice for this collection has been withdrawn.

“Once the data is collected, it will only be used for the purposes of improving health and care. Patient data is not for sale and will never be for sale.”

More here:

https://www.digitalhealth.net/2021/07/gpdpr-september-implementation-date-scrapped/

There is a little more info here:

UK government halts GP data sharing scheme after 'mistakes' were made

The previous launch date of 1 September has been dropped until new targets are met.

By Sara Mageit

July 22, 2021 05:22 AM

The government has halted its controversial GP data sharing scheme, following Lord Bethell admitting 'mistakes' have been made in the way the programme has been run and managed.

The launch was previously delayed by three months, with patients being given the option to opt out of plans to share GP medical records with third parties by 1 September.

In a letter to GPs, the government has now said that it would only go live once the following four conditions have been met:

• The ability to delete data already collected prior to a person choosing to opt out;
• The backlog of existing opt outs being fully cleared;
• The development of a “trusted research environment” — a repository into which the data will be collected and accessed only by NHSD-approved users without further extracting the data; and
• Greater patient awareness of the scheme.

WHY IT MATTERS

During the committee, Bethell also said letters could be a “clunky form of communication”, but added he would not rule it out.

Health minister, Jo Churchill has called for a simple system of opting out of data sharing, after it emerged thousands of opt outs have not yet been processed due to COVID-19 disrupting operations and the administrative burden it has put on GPs.

Campaigners, the BMA and the Royal College of GPs (RCGP) are among those who have expressed concern that the plans have not been well-publicised, leaving doctors to inform patients.

There are also fears about sensitive information on GP records being shared, including mental and sexual health, criminal records, smoking, drinking habits and instances of domestic abuse.

NHS Digital says the current system for collecting patient data is more than 10 years old and needs replacing.

THE LARGER CONTEXT

The NHS tried to put GP records in a central database in 2013 under the Care.data programme, but it was abandoned in 2016 after confidentiality complaints.        

More here:

https://www.healthcareitnews.com/news/emea/uk-government-halts-gp-data-sharing-scheme-after-mistakes-were-made

Regular readers will recall I expressed concern about some of the aspects of a similar Australian initiative last week:

Friday, July 23, 2021

I Am Not Sure I Am Comfortable With (Private) Public Health Networks Holding All This Data.

I noticed this during last week.

Data hosting

17 June 2021

Primary Health Insights, the health data storage and analytics platform initiated and built by PHNs, is now operational.

The roll out of the data onboarding process and governance audits has been completed and most of the 27 participating PHNs are now storing de-identified patient data, sourced from general practices, in their secure lockboxes.

Lead by WAPHA, his has been the largest and most complex national project undertaken by PHNs, and the first at this scale by PHNs operating as a collective.

Here is the link:

https://aushealthit.blogspot.com/2021/07/i-am-not-sure-i-am-comfortable-with.html

Reading about what is going on in the UK my concerns are deepened.

Firstly with this list of issues the UK need to resolve – viz:

• The ability to delete data already collected prior to a person choosing to opt out;
• The backlog of existing opt outs being fully cleared;
• The development of a “trusted research environment” — a repository into which the data will be collected and accessed only by NHSD-approved users without further extracting the data; and
• Greater patient awareness of the scheme.

I would wonder how close we are to addressing these issues?

Also this is a pretty long list of concerns:

“There are also fears about sensitive information on GP records being shared, including mental and sexual health, criminal records, smoking, drinking habits and instances of domestic abuse.”

We don’t seem to have either opt-out, awareness or consent addressed at all.

I really wonder how good a leadership we are seeing from the leaders in General Practice in Australia to properly address these issues as we are seeing with the UK GP organasations.

Prima facie I would say this really is not good enough in 21^st Century Australia.

Read the earlier blog, linked above for more sources of concern!

What do you think? I would say that the UK are, at least,  trying to do the right thing and listening to public opinion to some degree (having been sprung in the past) whereas little is being done here.

We seem to be trying to repeat mistakes made elsewhere!

David.