What is patient data and how is it used?

Patient data is medical information held about an individual patient. Patient data may include information relating to their past and current health or illness, their treatment history, lifestyle choices and genetic data. It may also include biometric data, which is any measurable physical characteristic that can be checked by machine/computer.

In the NHS, patient data is held in individual medical records which can be accessed by health care professionals in various places such as a patient’s GP surgery and their local hospital. The information is used to inform decisions about that individual’s care and treatment.

This type of patient data is also used for research to help identify effective treatments, monitor the safety of medicines, and generate new knowledge about the causes of disease and illness. Advances in information technology and the introduction of electronic medical records are increasing opportunities for researchers. Collecting and sharing patient medical data is particularly important in improving our understanding of rare and genetic conditions, to help address the unmet needs of these patients.  Most genetic conditions are rare. With such small patient populations, it is important to gather information from as many patients as possible. Findings of research based on patient data can be used to estimate the burden of disease, inform health service planning decisions, identify new treatments and demonstrate their impact.

There are strict rules in place which ensure that patient data is shared and stored safely. The Health and Social Care Information Centre (HSCIC) is sponsored by the Department of Health and is responsible for publishing standards and guidelines on data collection and reporting, including how personal confidential information should be looked after.

It is important that patients have control over how their data is used for research. Patients should be able to make an informed decision and be given the opportunity to opt out of sharing their data for the purposes of research, if they wish. In recent work Genetic Alliance UK found that patients and family members supported the use of ‘dynamic consent’ in genomic research (you can read the patient charters that were developed from this work: Genome sequencing: what do patients think? and Genome sequencing: what do cancer patients think?). Dynamic consent is a system which allows individuals to remain engaged with research projects, beyond their initial participation, and gives them greater control over how their data is used. In contrast to more traditional types of consent, dynamic consent means that participants are given real time information on the research and they are able to provide or cancel their consent at anytime.