Healthcare information is frequently stored electronically in order to improve the care you receive from the NHS. For example, any diagnoses or clinical notes made by your GP are now stored on your electronic patient record. These electronic records allow clinicians to share vital information about a patient’s existing medical conditions, for example, and aid with prescribing for patients with allergies.
The data recorded in electronic patient records is also very beneficial for healthcare research. It can be used to create tools for assessing a patient’s risk of developing heart disease or diabetes. Such research can also determine the best interventions for helping patients avoid developing these long-term conditions. Patient data has helped researchers show the effect of lifestyle on cancer risk, and to identify the effect of Thalidomide when given to expectant mothers.
The ResearchOne project aims to facilitate world-class healthcare research which will help improve patient outcomes, experiences and the performance of the NHS.
As important as this research is, the confidentiality of both patients and practitioners remains paramount. Ensuring that research data is both anonymous and secure is our foremost concern.
ResearchOne has full approval from the National Research Ethics Committee and the Department of Health’s National Information Governance Board, including a recommendation from the Secretary of State for Health. These bodies exist in order to help maintain patient confidentiality and ethical standards.
The data held on ResearchOne has all been de-identified. Any data items which could be used to identify a patient have been removed. This includes a patient’s name, NHS number, hospital number, date of birth, postcode and any textual notes, for example.
In order for any de-identified data from electronic records to be stored on ResearchOne your healthcare provider must have consented to allow this data to be included for research purposes. This means your General Practice or Hospital have explicitly agreed to use the anonymous data they have recorded to help aid healthcare research.
Even though the research data is not identifiable, you still have the option to prevent your anonymised data from being included on ResearchOne. If any of your healthcare providers is involved in the project, they will be displaying posters and leaflets in their reception areas. If you want to opt-out of your anonymous data being extracted, then just inform any member of staff . An opt-out entry will be included on your record and this data removed from the research data set promptly.
The NHS National Institute for Health Research website has information about the importance of patient data in healthcare research. Their leaflet explains how, what and why patient data is used for research purposes.
Further details about the aims of ResearchOne and the benefits it can bring are available in the ResearchOne patient leaflet.