Alt Ed Writes Mental Health, Wellbeing and Tech

Series I: Ethics, Privacy and Security in Mental Health and Big Data Research [Part 7]

As we become more reliant on technology, and as data becomes digitised, is it possible to use data to help with our mental health? This series explores how Big Data can help with mental health.

Ethics, Privacy and Security

The issue of confidentiality and information sharing has persisted and become even more significant with recent advancements. The sharing of information is important for medical advancements; however, mental health professionals have ethical and legal obligations – they are bound to a duty of confidentiality to their patients.

With the stigma around mental health still thriving in society, a breach of confidence can have an effect on the patient who places their trust in the mental health professional. Only with their consent is it acceptable to share such sensitive data. However, the most sensitive data is the most insightful data that can help find better answers.

Along with the Data Protection Act and the Human Rights Act, the Mental Health Act in the UK attempts to make sure mental health information is respected and protected. In the United States, the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which does serve predominantly traditional healthcare, has a limited scope – serving only traditional health data.

The new health data gathered, as a result of increases in technology that allow people to be more engaged in managing their own health (i.e. wearable fitness trackers, social media sites and mobile apps) has been left relatively unregulated. Mobile health apps contain personal data such as personal health records and other personal information. Alternatively, social media sites contain information created by users, whereby users share and discuss their health conditions and experiences. This data is outside the scope of any data and privacy laws, including the UK’s Mental Health Act and the HIPAA in the US.

Considering individuals have limited understanding of what can be done with their data and whether the health data they have disclosed on these platforms is protected by law, it is important some regulation is put into place. The possibility of the data being shared improperly raises concerns, as this would not be accepted were it mental health data collected in traditional formats.

Another issue is that mental health apps have made many claims; however, these have never been studied or evaluated. The lack of regulation has meant that effective apps and very ineffective apps are in existence; yet it is difficult for psychiatrists to recommend any as they do not know which is useful and safe. Only a small number of literature analysing the success of these apps have helped bring some element of accountability.

Regulation is important because these mental health apps and social media sites can offer incorrect or misleading information, or provide ineffective solutions. Other problems include: (1) apps with weak security, which puts at risk patient’s personal health data; (2) the selling of patient data by apps, without any declaration; (3) the data collected by apps and social media sites may not be clinically useful.

Still, while regulation is important, it must be approached carefully. The data is crucial to advancements in mental health research and potential solutions. Therefore, there should be some flexibility. Security must be prioritised – failure to do so will result in cybersecurity threats, as seen when the NHS was held to ransom. It is also important mental health professionals and patients work hand-in-hand to develop a code of ethics that can be used as a guideline.

Written by Rodney

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Liked this? Take a look at these:

Series I: Big Data and Traditional Health Care Data [Part 3]

Series I: Big Data and Mental Health Apps [Part 4]

Series I: Big Data, Mental Health and Social Media [Part 5]

Series I: Big Data, Mental Health and Artificial Intelligence [Part 6]

Series I: Big Data and Mental Health – The Summary [Part 8]


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