• Parent / Guardian

    Describes those with legal responsibility for a child. The term "person with parental responsibility" is used by the Human Tissue Authority.


  • Participant

    A person who takes part in a research study or allows their tissue samples or information to be used in research, following appropriate consent, e.g. a patient or a healthy volunteer.


  • Participant / Patient information sheet (PIS)

    The participant information sheet, in a form appropriate for the study population, explains what the research involves and how the research study will affect the participant. It is an important tool which helps support the consent process and is usually accompanied by a consent form.


  • Peer review

    A system whereby research, or research proposals, are reviewed by independent experts to assure the quality of the research. For example:

        -  can the research design answer the question?

        -  does the research add to existing knowledge?


  • Personal data

    In the context of the Data Protection Act 1998 personal data comprise information about living people who can be identified from that data, or from combinations of data and other information which the person in control of the data has, or is likely to have in future.

    To determine if the data you hold is personal data, please refer to the flowchart on pp6-7 of the Information Commissioner's Office What is personal data? – A quick reference guide.


  • Personal information

    Refers to all information about individuals, living or dead. This includes written and electronic records, opinions, images, recordings, and information obtained from samples. Anonymised information, is not strictly speaking, personal information.


  • Primary data

    Qualitative or quantitative data newly created or collected in the course of research. Sources may include independent experimental measurements or observations and information that has come from survey questionnaires, non-research documents (e.g. letters) or focus groups.


  • Principal Investigator (PI)

    The UK policy framework for health and social care research defines the Principal Investigator as the leader responsible for a team of individuals conducting a study at a site. In a single site study the PI and the CI are likely to be the same person. (To avoid confusion the term Principal Applicant is being increasingly used to describe the lead investigator on a funding application).


  • Proposal

    A proposal details the scientific and ethical reasons for research and should demonstrate conceptual innovation, methodological rigor and substantive content. The term is used to refer to a document produced to apply for funding.


  • Protocol

    A research protocol is a written document demonstrating the necessity and feasibility of a particular study, as well as giving a detailed plan of how the study will be conducted, analysed and disseminated.


  • Pseudonymised data / information

    Pseudonymised data/information is anonymous to the people who hold or receive it (e.g. a research team), but contains information or codes that would allow others (e.g. those responsible for the individual’s care) to identify an individual from it.  (Also referred to as linked anonymised).