When is it ethical to use public health data?

The use of public health data is always a sticky subject: when is it ethically and morally right to use somebody else’s personal information, especially when it comes to something as sensitive as medical data? In this article, I’ll talk about the pros and cons of the use of this data, and explore how – when used responsibly – it can change the lives of countless real-world patients.

Public health data is key in finding cures to some of the most challenging medical conditions around today, and without it, the process to find a solution to these problems will only become more drawn out and expensive – and will likely produce a treatment with a bigger price tag for the consumer than it otherwise would have had the pharmaceutical been given access to this crucial information. Clinical trials are long, labour-intensive efforts that can easily cost around $2 billion per drug – and, at present, only have an approximate success rate of 10%. This means that any successful drugs developed to tackle a certain condition have to also cover the cost of the nine failed trials – so we’re looking at a reimbursement of roughly $18 billion before the pharmaceutical company breaks even.

One of the main arguments against the use of public health data in a pharmaceutical sense is that it infringes on the privacy of those it refers to. It’s not at all unreasonable to suggest that individuals have a right to keep sensitive medical information to themselves, and is likely something that most of us ourselves would prefer. There’s nothing more private than our medical history, so it’s completely understandable that many people are cautious when it comes to sharing this data.

That being said, it’s very important to highlight the fact that this data is totally anonymized and in no way whatsoever provides the pharmaceutical company with any information that might identify any individual. Research and development teams have no interest in you or your personal life – they’re only interested in the information that matters, and that’s what we’re talking about here.

A key argument to be made in support of using public health data is the fact that this data exists anyway. Not using it might be considered akin to wasting a golden opportunity to change the lives of countless individuals who are suffering from a variety of different ailments and conditions. Ultimately, we all need to ask ourselves a difficult question: if you held key information that could help develop a treatment for a common disease affecting the lives of millions of people, what would you do with it? Would you make sure it gets into the hands of the right people, or would you simply throw it away and add years – and billions of dollars - onto the research and development process?

The use of public health data is going to be a touchy subject for the foreseeable future – and we think this is a good thing. A healthy amount of scepticism is always advisable when it comes to sharing data - particularly sensitive medical information – and we understand that data analytics has got a bit of a bad reputation due to certain organizations using it for the wrong reasons. However, when it comes to saving lives – or drastically improving the lives of those who are suffering from conditions which as of yet have had limited success in terms of available treatment – public health data has the potential to do a lot of good when in the hands of the right people.

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