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Whose data is it anyway?

When patients receive NHS healthcare services, they are giving consent to that Trust to store clinical and demographic details. Most people are aware their data is stored, and many know they have the right to view this information.

What is coming to the surface more often for patients is the realisation that Trusts need to share data with other healthcare providers, often in a separate organisation. More often, stakeholders in healthcare are asking: Whose data is it anyway?

The value of sharing patient data

Patients are being made aware that they have the right to opt out of this data sharing if they choose. This may include sharing treatment plans for transfer of care, or the ability to access a patient’s data in the case of an emergency when knowing their allergies or medication history may save their life in an emergency room.

However, not all data use is for the treatment and management of the individual patient. It may also be used for research and planning purposes. UK citizens are now being given the option to opt out of sharing their clinical data for beneficial secondary uses, such as:

Healthcare planning

On a larger scale, patient data can be anonymised and evaluated for planning purposes. Organisations can look at trends to predict and develop services that will provide better care for their patient populations

Research purposes

Pooled, anonymised patient data can help inform the development and confirm the benefits of newer treatments. Researchers can draw insights from Real World Data (RWD) – instead of traditional clinical trials which study smaller cohorts of patients and exclude many individuals (e.g. with coexisting conditions for control purposes) – to understand how treatments work within the general population. Since data is collected retrospectively, they can include much larger numbers of patients studied over longer time periods, thereby reducing statistical error.

Recent studies suggest that many patients are in support of allowing access to their data for the greater good; The New England Journal of Medicine recently published Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing, which showed that most patients see the advantages of sharing their healthcare data for research purposes. In fact, only 8% of clinical trial participants interviewed felt that the potential negative consequences of data sharing outweighed the benefits.

Organisations such as Understanding Patient Data are helping both patients and the potential secondary users of anonymised patient data understand and communicate the value of pooled patient data. Privacy remains incredibly important, and patients should always have access to their own data.

But we must not create barriers that interfere with care coordination or research purposes. Data becomes so much more valuable when we can use it for the greater good.

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