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Lack of IT guidance on data opt-out despite end-of-month deadline

by Caitlin Tilley
25 July 2022

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GP practices have had no IT guidance on the national data opt-out despite the deadline to comply looming at the end of the month, an LMC has warned.

Practices must comply with the national data opt-out policy and apply patient preferences by 31 July.

But Kent LMC said in a recent bulletin: ‘We are all still awaiting full guidance and for EMIS to roll out the changes that will enable auto removal of opted-out patients.’

Practices ‘should also receive information for patients’, it added.

Limited information is currently available on the NHS Digital website, which says: ‘All practices must have procedures in place to identify whether they have data disclosures where the national data opt-out applies, and if so, how they will remove the records of patients who have registered an opt-out.’

Meanwhile, pharmaceutical companies have committed to greater transparency when using NHS data for medical research.

The Association of the British Pharmaceutical Industry (ABPI) announced that all of its members have committed to a new set of principles it has developed.

The ABPI, which is a trade association representing more than 120 biopharmaceutical companies supplying prescription medicines in the UK, said the principles aim to ‘increase transparency and build public trust in the biopharmaceutical industry’s use of health data for research purposes’.

The set of principles was developed ‘in consultation with the NHS’, as well as the general public, patient groups and medical research charities, it added.

They also included an ‘industry commitment to publish findings which could be used to improve care across the health system, for example tackling inequalities or helping to address the NHS backlog’, the ABPI said.

New ABPI governance principles for the use of health data

  1. We will be transparent about the purpose of our health data access
  2. We will ensure that contractual arrangements to access health data will be clear and will return fair value to the system
  3. We will actively promote Patient and Public Involvement and Engagement (PPIE) in health data projects
  4. We will ensure that insights arising from the health data analysis we conduct will be appropriately shared across the health system for the benefit of patients and other researchers, as agreed with the data custodian
  5. We will support robust health data privacy protections and will ensure compliance with all prevailing laws and regulations as they evolve.

Source: ABPI

ABPI chief executive Dr Richard Torbett said: ‘These principles demonstrate that trust, transparency and public involvement are at the heart of how the industry uses health data for the benefit of everyone.’

Earlier this month, NHS Digital confirmed that changes to allow GP practice sharing of patient data in response to the Covid pandemic will continue.

And an official review has suggested that a copy of patient records should be used for data sharing purposes, with the Government taking the data controller role.

Plans for mass patient data sharing have been mired in controversy, with the lead of a Government-commissioned review admitting in May that trying to re-launch plans last year was ‘a mistake’, before a ‘trusted research environment’ had been guaranteed.

This article was initially published on our sister title Pulse.

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