Storing and Securing Health Data
Health data can be used in many areas of research such as understanding disease, monitoring drug safety and efficacy, evaluating new treatments and interventions through clinical trials to inform NHS services, clinical practice and policy.
The use of personal confidential data in health care is governed by the NHS Act 2006, the Health and Social Care Act 2012, the General Data Protection Regulation and the Human Rights Act.
Overarching principles of managing patient data include:
- Data is managed safely and securely
- Patient confidentiality and privacy is safeguarded
- Personal and sensitive information should not be stored longer than necessary. Options for de-identification, anonymisation or disposal should be considered.
Identifiability Demystified
Understanding Patient Data have a produced a useful guide
More information can be found on funders' websites such as:
Other sources of information include, the King’s Clinical Trials Unit provides support to researchers in administering academic led trials across KHP and externally and the Human Tissue Authority (HTA): Codes of Practice and Standards webpages.
Accessing NHS Patient Data
All organisations that have access to NHS patient data and systems must use the Data Security and Protection Toolkit (NHS DSPT). NHS DSPT is an online self-assessment tool that allows organisations to measure their performance against the National Data Guardian’s 10 data security standards.
Please see IT Assurance’s Sharepoint pages for more details about the toolkit, how to fill it in and advice on finding the answers you need, or contact them on itassurance@kcl.ac.uk.
Sharing Health Data
The majority of research projects involving health data require ethical approval. Funding bodies are increasingly committing to ensuring that the research potential of these data is maximised.
Case study:
Cancer Research UK and the Medical Research Council stipulate that all research data assets for human health are to be shared timely, responsibly, with as few restrictions as possible whilst safeguarding intellectual property, the privacy of patients and confidential data.
Below you can find a list of resources on sharing as well as ethical issues around health data:
Funders
General