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Is our personal data fair game in the drive to create Theresa May’s “hostile environment” for migrants?

Patients are dying as politicians use the NHS crisis to undermine what we love most about it – a service for all, free at the point of access, that protects our confidential health data.

As a doctor and public health researcher, I believe health services should not be de facto border control. Deterring people from seeking help when they are unwell is not only bad for individuals, it is bad for public health. Healthcare is a right for all, not a privilege for some. 

Last week, Dr Sarah Wollaston MP and the rest of the health select committee heard evidence to about the impact of a Memorandum of Understanding (MoU) between the Home Office and NHS Digital (the national information and technology partner to the health and social care system in the UK). This data-sharing agreement to support the tracing of immigration offenders is one of a “suite of products” that enable the government to maintain the “compliant environment”, as they referred to it on the day.

It was upsetting to hear Marissa Bereoni, of Justice for Domestic Workers, describe how a domestic worker had died from pneumonia – a completely treatable condition – because she had been too scared to see a doctor. Further examples were given by GP Lu Hiam who works for Doctors of the World, a charity established because the NHS is not truly accessible to all – some are too afraid to use it.

The hearing confirmed what I and other campaigners have been arguing ever since Theresa May said in 2012, as Home Secretary, that “the aim here in Britain is to create a really hostile environment for illegal immigration”.  That creating this hostile environment within a healthcare setting is particularly damaging, and shows little regard to the potentially life-threatening consequences of this blinkered focus on immigration control.

Last week’s testimonies also confirm the human stories behind written evidence from Public Health England (PHE). Public Health England highlighted no fewer than 14 research studies demonstrating that the threat of being reported to immigration officials deters people from seeking help when they are unwell.  Their evidence was however somewhat undermined by a disappointing cover letter from PHE’s Chief Executive Duncan Selbie who declared that “whilst there is a wealth of evidence about migrant health behaviours there is no robust statistical evidence about the impact of knowledge of data sharing on deterring immigrants from accessing healthcare treatment”.  At the committee hearing, this statement was then used by the government to justify their actions, which begs the question: Exactly how operationally independent is PHE?

Of course, as pointed out during the meeting, it is almost impossible to gather “robust statistical evidence” on undocumented migrants, particularly when living in a country where every social interaction they have might either result in abuse or arrest. Nevertheless, PHE has agreed to attempt to collect this data over the course of the next two years, during which time who knows how many more people will come to harm?

Another important point raised by a representative of the national data guardian’s office was the paramount importance of the public’s trust in our ability to deliver a confidential healthcare service.  As Sarah Wollaston MP pointed out, in the five paragraphs within the MoU that discuss the public interest, the public’s trust that their own personal health data will remain confidential, is not mentioned once.

For us healthcare workers, each decision to release confidential data beyond the health service produces blood, sweat and tears.  We do not take it lightly.  When we do it, it is most likely because life is in danger.  Even if you were part of the group who stole all those diamonds from Hatton Gardens, we would still not share your details. 

And by details I mean primarily your home address, because when you give this in exchange for medical care that is where my contract to protect your data begins.  Not so, according to the government.  Demographic data is fair game. There is a fundamental disconnect between guidance from both the General Medical Council and BMA in relation to confidentiality and what the law allows.

From the Home Office’s perspective, committing an immigration offence such as living in the UK without appropriate paperwork constitutes a serious enough offence to justify the routine sharing of data with no scrutiny on a case-by-case basis.  During the hearing the government claimed that escaping deportation was another crime warranting the use of medical services to track you down.  I find this particularly galling given recent reports demonstrating the harmful and even life-threatening effects of unlimited detention in this country.

Deterring people from accessing healthcare in this way not only puts lives at risk but results in higher costs. These practices threaten to undermine patients’ trust in my ability to protect their right to confidentiality – the cornerstone of the patient-doctor relationship.

The final question of the session was ‘Who can stop this?’  The answer: NHS Digital.  But only if their evaluation thinks this is the right thing to do. For now, they are happy hiding behind the law because, technically, what they are doing is still legal even if it is not right.  This may change if the legal challenge lead by the NGO Migrants Rights Network succeeds.

Unless we stand up and hold the government to account, they will continue to inflict damage to some of the most vulnerable people in our society.  Our NHS is in crisis but we must not allow this to undermine what we love most about it – a service for all, free at the point of access. 

Join us in the #PatientsNotPassports bloc at the NHS in Crisis protest on Saturday February 3rd.

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