The Health Research Consent Declaration Committee (HRCDC) was established as part of the Health Research Regulations under the Data Protection Act of 2018. The purpose of these regulations is to support health research and promote necessary and desirable public confidence in such research. The inclusion of public and/or patient (PPI) representatives seeks to ensure that all decisions made by the HRCDC regarding the use of personal data for health research, where consent cannot be obtained, are made taking the perspectives of the public and patients into consideration. An amendment to the Health Research Regulations was made in January 2021 to specifically include reference to researchers consulting with patients and public on research. The role of PPI members on the HRCDC is equal to that of all other Committee members. All members of the HRCDC have their own skills and experiences that they draw upon to contribute to the consensus-based decisions of the HRCDC, as required under the Health Research Regulations. The PPI representatives attend Committee meetings either in person, or more recently online, and they also complete a considerable amount of pre-meeting reading. The HRCDC Standard Operating Procedures set out that at least one PPI member must be in attendance for each meeting. For meetings to date, all three PPI representatives were generally in attendance. The HRCDC members were appointed in March 2019.
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