Heena is a member of the PEDRI Public Advisory Group and is from London.
Heena has been involved in public involvement and engagement in research since May 2022. The research projects for which she has been a patient and public involvement and engagement member cover a range of areas including a data index/catalogue, data privacy, AI technology implementation, policy implementation, and methodology research. Heena’s interests and concerns on the use of patient data are what prompted her very first application for a public contributor role.
Heena is currently part of the Cancer Research UK (CRUK) Research & Strategy Insights Panel and CRUK Commercial Data Partnerships Panel. Through Heena’s involvement on these panels, she was offered the opportunity to represent CRUK on PEDRI’s Public Advisory Group.
Heena’s perspective on the use of data in research differs based on the type of data (and data content), the use of data, who is using it, and other considerations. Heena believes there is a need to balance progress with the necessity to protect privacy and maintain public trust and confidence.
Heena is generally in favour of re-using research data (e.g. re-using consented data obtained from cancer trials) and feels that this can be a way to significantly reduce costs, speed up the research process and maximise value from that data. Heena has a much more cautious approach to the use of unconsented data, especially unconsented sensitive data. Heena’s cautious perspective on the use of unconsented data has meant that she has been or is in the minority for some patient and public involvement and engagement panels. Heena believes it is important for diverse perspectives on the use of (public) data in research to be heard and considered.