New European Data Legislation

16 December 2019

 

New European data legislation requires a balance between the needs of the many and the needs of the individual.

The benefits and risks of using personal data splits opinion, particularly within the medical research sector.

'Big data' can digest previously unimaginable quantities of information and uncovers previously unforeseen patterns. On the one hand, it may address the challenges posed by chronic conditions such as heart disease or cancers. But, the way forward is less clear.

This is because one of the richest sources of information is patient medical records. As we migrate to electronic formats, such data becomes simpler to extract. So simple, in fact, that patients have understandable concerns that their anonymity may be compromised.

Analysing ‘big data’ for medical progress v patients’ privacy rights

For some, the ability to process and analyse big data is key to developing next generation diagnosis, treatment and cures for many conditions.

But this has to be tempered by ensuring that data sharing takes place in a safe, secure manner.

Data management and security must be right. Patient confidentiality should always be guaranteed.

Sharing data from clinical and medical trials for policy decisions must be balanced by protecting privacy and anonymising data as appropriate. Although there are benefits of sharing data, there are also risks.

Designers of electronic health records (EHR) should consider the needs of users. There must be a way to mask sensitive data or provide patients with control or information about who can access their data via EHR.

The healthcare industry is also following progress and may benefit other sectors. Some are already looking to incorporate efficient ways of involving input from clinicians and patients.

Data from EHR may provide fresh insights, such as better understanding of the impact of interventions and the effectiveness of care pathways while tracking patient outcomes via EHR would help quantify the value of medical technology.

Healthcare costs are spiralling and effective interventions to contain these costs will be welcome.

However, the need to balance the wider needs of society against the individual right to privacy cannot be avoided. 

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