Engaging with the public at a local level is key to gain trust in NHS data sharing
Data sharing could deliver better health outcomes. However, as individuals are required to “opt out” rather than “opt in”, it's important that the public trusts their personal data is protected.
I have been reflecting, as chair of the APPG for Data Analytics (APGDA), on how NHS England’s recent proposals for the establishment of a new central medical database are a perfect example of the complex balances around trust, transparency and tech, the subject of the APPGDA’s two recent reports.
A new centralised database is set to gather the medical records of NHS England’s 61 million users as part of a new scheme called the General Practice Data for Planning and Research (GPDPR). The consultation for the scheme closes at the start of the September, after which the government plans to use the data to inform and develop health and social care policy, plan and commission health and care services, and protect public health such as managing the Covid-19 pandemic, enable research, and provide individual care in exceptional cases. However, as individuals are required to “opt out” rather than “opt in”, it’s particularly important to get engagement right so that individuals know what they are being opted into.
The plan raises many issues about the public’s trust in the NHS ensuring their personal data really is anonymised, that it’s safe from hacking, and will not be provided to third parties for purposes that you and I would not expect.
There is a huge opportunity missed to get plans off on the right footing, by engaging at local level where trust levels are greatest
NHS Digital have said that the database will be accessible by third parties in the healthcare industry. Further clarification around this will be required in order to build public trust in the scheme.
The government delaying the end of consultation for NHS data-sharing until the beginning of September provides it with a few weeks of opportunity to provide clarification and better communicate the countless ways in which data sharing could benefit the NHS, and all of us, in delivering better health outcomes. There are plenty of examples to demonstrate the benefits of data capture and how the NHS can use patient data to predict and potentially prevent a decline in patient health.
In East London, one urgent care centre has significantly reduced avoidable admissions to A&E by giving clinicians access to the patient’s GP record, allowing them to make a full assessment of the patient’s needs before they are admitted. This means only 20 per cent of patients go on to A&E, with the rest treated through more appropriate services, ultimately improving clinical care and supporting better targeting of doctors’ time.
An innovative GP-led service in Bristol has demonstrated how sharing information can transform the care of some of the most vulnerable in society. People attending a walk-in homeless healthcare service can simply give consent to the GP allowing them to access their complete medical record as opposed to having to repeat their story time and time again.
But there are also cautionary tales about the fragility of the public’s trust, which we drew on in the APGDA’s first report Trust, Transparency and Tech. In this report, published in May 2019, we set out recommendations for government on how to draw on the power of data while overcoming growing distrust and suspicion about data and algorithm-based decisions.
In our follow-on report published in April 2021, Our Place our Data, we looked at where trust can best be built, and concluded this is at the local level, where there can be close-up and personal engagement between organisations and individuals.
The non-transparent approach adopted by the government seems surprising considering the government’s understanding that “data must be conducted in a way that is trustworthy, aligned with society’s values and people’s expectations as public consent is crucial to the long-term sustainability of data sharing activity”, as stated in last year’s independent report addressing trust in public sector data use.
As pointed out in Trust, Transparency and Tech, public trust in medical data capture has been shaken due to previous attempts to extract data from GP surgeries into a central database, such as care.data. The current plans resemble those whereby attempts made by NHS England to effectively communicate to the public their right to opt out were seriously flawed, leading to more than a million opt outs as this came to light and the scheme being abandoned in 2016.
All in all, this is a huge opportunity missed to get the plans off on the right footing, by engaging at local level where trust levels are greatest, via local surgeries and their patients.
Covid-19 showed us how initiatives driven by national institutions, like track and trace, can run into problems on trust and hence take-up levels. The proposed central database will collect information that many consider highly personal, not just on our physical, mental and sexual health, but also on sex, ethnicity and sexual orientation.
We would strongly urge the government to think again, and to get this scheme onto the right footing, through meaningful engagement, at the local level.
Daniel Zeichner is the Labour MP for Cambridge and chair of the APPG for Data Analytics.
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