What Happens to Your Health Data?

How is patient data used and in what form is it held?

Health records that are linked together for research purposes have all of the patients’ personal information or ‘identifiers’ removed and replaced with a code that is a long set of randomly assigned numbers and letters joined together, we call this ‘pseudonymisation’. This is the best way for researchers at The Farr Institute to link different sets of data together without patient confidentiality being compromised.

The Farr Institute abides by a core set of principles and its researchers undertake comprehensive training that is designed to ensure security and compliance to these principles and full confidentiality for patients.

None of the linked data sets contain individual’s names, dates of birth or full addresses and it is extremely difficult to decode them without considerable expertise and computing power.

What are the risks to my privacy or safety?

Whenever we share information about ourselves, whether this is in a bank, shop, online service or the NHS, some of this information is stored and linked. The Farr Institute takes strenuous measures to ensure that patient information is safe and confidential. All data are stripped of identifying information before arriving at the Institute and strict governance frameworks are in place so that the data are safely used and privacy is protected.

In the extremely rare and unlikely case that patient information was accessed inappropriately, this would result in severe penalties for both the individual and the organisation in which the data are held.

How is the public’s interest being protected when health data is used for commercial research?

Previous public engagement work has shown that the public has less trust in commercial companies and that there is some anxiety about potential ‘selling’ of data to big business for profit. At the same time, there is a general acknowledgement that pharmaceutical companies produce the drugs which will eventually benefit the public and that research partnerships between the health services and such companies are therefore necessary.

Most people are willing to accept these uses, provided the data are only used within a controlled setting. This means that commercial research can pay for processing and accessing of relevant data, but would not be able to buy that data. This also highlights the need for clear agreements around the expected payback for public health that such commercial research generates.

What about non-medical data?

The Farr Institute is not primarily concerned with non-medical records but collaborates with approved and appropriate agencies in non-medical fields such as the Administrative Data Research Network, funded by the Economic and Social Research Council.

How is the Farr Institute working to ensure that the maximum benefit for society will come from this type of research at the minimum possible risk?

Public engagement is a core component of the work of the Farr Institute and we ensure that the public’s voice is listened to both at the strategic level and as part of individual project teams. The Farr Institute is committed to conducting and supporting research that has the potential to benefit patients and wider society.

We work closely with NHS service professionals, policy makers and other stakeholders to ensure that proposed studies are relevant, and that the findings are made available to key decision-makers for proper consideration.

What do the public think about sharing of health data for research?

A number of studies have so far been undertaken to get a sense of what patients and the wider public think about data linkage for health research. These studies included the expectations and concerns that people had, and their views on risks and benefits.

Whilst some people are against sharing their records for any purposes, and are free to opt out, on balance most citizens consider that it is in the best interest of society for health records to be used responsibly for research in the public interest, so long as safeguards are in place.

In addition, there is much support for the NHS as an organisation, and for the idea of making better use of existing health records for research that may help patients, the NHS itself and society as a whole. Research consistently points towards high levels of trust in academic health researchers and clinicians.

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