Navigate consent

Why does consent matter?

SHIP is concerned with the appropriate sharing and use of health data for research purposes. Where data are ‘personal data’ (i.e., relating to an identifiable individual) they enjoy the full protection of the law. This does not mean that such data cannot be used for research purposes but strict requirements apply, for example, where possible, the consent of the person should be obtained.

The concept of autonomy is the ethical concept which underpins the need to obtain consent. The concept essentially invokes the integrity and dignity of the human person, and in the context of research involving the secondary use of patient data, it prescribes that individuals should be able to decide what is to be done with his or her personal data. Respecting autonomy in this context therefore means that before use is made of a patient’s personal data, specific consent for the proposed use should be obtained.

When is consent required?

Most research does not require personal data and can proceed with ‘anonymised data.’ Consent is not required for the use of anonymised data as such data is not, legally speaking, ‘personal data.’

However, sometimes research cannot rely on anonymised data and risks to privacy can arise, but consent is not possible or practicable. As consent is only one of several possible justifications for the processing of personal data under the conditions for processing in schedule 2 and schedule 3 of the DPA, consent is not always legally necessary. Please see the guidance page on conditions for processing personal data for more information.

If you cannot obtain consent to use personal data, then, under the SHIP model, authorisation will need to be provided by the appropriate authorising body in order to be able to use the data in your research project. Providing that you can justify why you need to use the data, why it is not practicable or productive to use anonymised data or to seek consent and that you have satisfied the conditions for processing under the DPA, it should not be difficult to obtain the necessary authorisation.

Please see the guidance page on autonomy and consent for more information.

Route-map on navigating consent issues

Please click here to access the route-map which will help you navigate consent issues.

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