Health insurers are carrying out increasingly more checks to reduce costs within mental healthcare services. They have every right to do this, but more and more often personal and sensitive information is being collected and examined, without prior permission. This looks like a breach of privacy. The president of the Dutch trade association for healthcare insurers, was visibly piqued by the statement that the healthcare insurers’ hunger for data leads to the conversation between patient and care provider in the treatment room, becoming ever-more public. He simply denied that there is any ‘hunger for data’, and was of the opinion that the patients’ details are treated with respect and a sense of privacy.

Nevertheless:

 Doesn’t he know that:

• The symptoms of every patient within the Dutch healthcare sector have to be measured (if not then you might be risking a hefty fine) before and after treatment?
• These symptom scores have to be put into the database of the foundation of Dutch health insurers?
• Patients don’t know this?
• Nobody knows what to do with this data, but it costs around 20 million euros a year to obtain it?
• Although the data is anonymised, it contains information about the sexuality, addiction, suicidality, paranoia, and dementia of all people who visit the Dutch healthcare service?
• This could be considered as putting sensitive, personal information in the public domain?

Health data in the UK

Data protection laws in the UK are very strict. Private sector organisations such as insurance companies, pharmaceutical companies, software providers, or private healthcare providers, cannot access personal health data (unless the patient has specifically given their permission).

When you apply for private health insurance or life insurance, the insurance company will want ask you questions about your personal health data, like medical, and family history. They will want this information to understand the risk of something happening to you, to figure out your monthly premium. You can choose not to share any of this information with them, in which case they won’t cover any pre-existing condition from the past five years. This is called moratorium underwriting.

When you make a claim, the insurance company might ask your GP if the claim concerns a pre existing condition from the past five years. The GP is only allowed to give them information concerning that particular claim. If you want full medical underwriting, you are required to provide more personal details. It is up to the insurers’ discretion whether the information provided is included in your coverage.

Anonimysed Data

So those are the rough guidelines on personal health data, but what are the rules on anonymised health data?  Anonymised data can be accessed and used by these organisations, but only if it is beneficial to the peoples’ health, and helps the NHS deliver their services, especially if they make a profit by using the information. For example, a pharmaceutical company may use this anonymised data to develop new medications.

According to the website “understandingpatientdata.org.uk” the majority of people don’t mind the fact that the NHS shares certain data with third parties if it helps improve health care standards, but research also shows that around 63 percent of the population don’t know that private companies have access to this information. This begs the question, would patients share less information with their health care providers if they did know, and should awareness be raised?

Jim van Os and Suzette Taplin contributed to this blog

Read more?

• The recovery story of Irene – those voices and paranoia were traumas looking for a way out
• Emotional Awareness: Unraveling the Essence of Mental Health”
• There is always hope – Mental health story from the US