Are we in the NHS reinforcing mental health stigma through excessive data secrecy? - InterSystems


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Are we in the NHS reinforcing mental health stigma through excessive data secrecy?

If mental health data remains more secretive than HIV, cancer or diabetes, care inequality will continue.

The human immunodeficiency virus, or HIV, once carried a stigma with similarities to that of mental illnesses today. Not long ago, even the occurrence of a test for HIV would be kept hidden from relevant healthcare professionals and care providers.

Attitudes towards sexual health have moved on. HIV tests are now carried routinely in pregnancy, for blood donations, and in other circumstances, with important information shared with other members of the care community to help deliver the best for patients.

When treating people with mental illnesses, however, healthcare professionals are rarely in such an informed position. Information about mental health is still perceived as particularly sensitive.

Why is mental health data treated more sensitively than HIV, cancer, or diabetes?

Often people talk about mental health data in hushed tones, as if there is something special, or particularly secret about it when compared to other health information. I recently heard a senior individual in one acute hospital talking about a new portal project, a technology designed to share information between professionals. They said: “Oh, of course, mental health diagnoses won’t be shown in the system.” This response clearly showed that the default position for many is to assume that information concerning mental illnesses should not be shared, and this potentially puts patients with such illness at a disadvantage.

As a psychiatrist, I have always felt that treating mental health data as if it needs to be locked away in isolation is a complete contradiction to delivering equality for mental health. I don’t see mental health data as being different than any other type of health data. Information about one’s schizophrenia or depression should in no way be seen as different, or any more sensitive or difficult as information about your HIV, cancer, or diabetes.

Patients with mental illness are often shunned by society and marginalised, and healthcare systems should not perpetuate the problem by hiding away vital information, risking further disadvantages.

Treating mental health data differently can harm outcomes

Patient privacy is central to effective care, and any sensitive patient information must only be accessed when appropriate. But when mental health is singled out with excessive secrecy, or even hidden away entirely, much worse outcomes for the patient can ensue, particularly when their problems are not understood.

Patient treatment cannot be effective if professionals don’t have access to information they need, and that inevitably leads to poorer standards of care. All too often in mental health, we know there is useful information that could help to treat the patient we are seeing, but yet it is unobtainable. This is especially so if that patient is being treated away from their local hospital, where their information may be locked away in the confines of a single organisation.

A first of its kind project in the NHS

Parity of esteem, or valuing mental and physical health equally, is now a national priority. But to really break down barriers, we need a societal shift to ensure availability of information needed to treat patients with mental illness becomes acceptable.

Four mental health vanguard trusts in the West Midlands, known as the Mental Health Alliance for Excellence, Resilience, Innovation and Training, or MERIT, are making important early steps towards this ambition, in a first-of-its-kind project for the NHS.

The four trusts have already begun to enable shared access to information among themselves, so that professionals can see specific but crucial information from the patient’s mental health record at time of crisis. This will mean that patients presenting to hospitals in times of crisis will receive better informed and potentially life-saving care.

The project, built on InterSystems information sharing platform HealthShare, could become a model for the entire NHS. It aims to put an end to situations where patients moving across the region show up to a hospital where professionals know nothing about them. MERIT will ensure that information directly relevant to the patient’s condition is immediately available.

Building trust

Our eventual vision is to provide a common mental health record across the West Midlands. This would be an enormous step forward, but starting with a clear clinical need, we are building trust together to share access to information and to start to remove gaps in mental health provision.

Expanding initiatives like this so that all healthcare professionals who need to understand a patient’s mental health needs are able to do so, will require of a great deal of trust and cultural acceptance. We are not there yet, but the conversation continues to evolve, especially with high-profile individuals like Princes William and Harry talking openly about mental health and mental illness.

Society needs to move beyond talking about just mental wellbeing, too. Just as the conversation for HIV has now moved on, I would like to see a similar journey for schizophrenia, bipolar disorder, and other illnesses that we can successfully treat so that we can make a difference to more and more lives.

Mental health, or mental illness, must go from being separated and secret, to part of normal healthcare data that you would expect to be shared with people who need to see it. As with any sensitive data, we need to make sure it is accessed appropriately, with safeguards and audits in place. We must stop seeing mental health as a special case. There should be no shame attached.

James Reed

Consultant Forensic Psychiatrist & Chief Clinical Information Officer. Birmingham & Solihull Mental Health NHS Foundation Trust. James Reed is a Consultant Forensic Psychiatrist and has been CCIO of Birmingham & Solihull Mental Health NHS Foundation Trust since 2013. He has participated in local, regional and national work on clinical IT (including the ‘Your Care Connected’ and MERIT vanguard data sharing projects) and advises various national bodies including the Royal College of Psychiatrists and the Professional Records Standards Body.
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