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UCL Institute of Health Informatics

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Do you have an interest in helping to shape how your health data are used for research to improve health and care at UCLH?

Opportunities for using data to carry out research to improve your health and care have never been greater. We would like to work with you to help guide how your data is used for research.

We are looking for people of all ages, backgrounds and experience to help us understand patients’ views and concerns around data ownership, value and use of data at UCLH. We want to work together with you to make decisions about use of data and change the way that we do research.

As a member of our patient group, you will be able to get involved in different ways including:

  • Providing advice to make sure patient health data is used responsibly for research
  • Helping develop principles and standards to
    • Guide and support people interested in using clinical data for research
    • Define the role of patients in future decision-making around use of data for research and innovation
    • Define the role of patients in developing future collaborations with commercial organisations and industry
  • Co-designing patient materials such as consent and information sheets
  • Co-designing the UCLH Data Access portal “MyCare” UCLH, the new patients portal that gives patients the ability to view information about their care at UCLH

You will be paid for your time and may claim expenses for meetings and associated activities.

How can I get involved?

If you would like to get involved or to find out more, please contact: 

Natalie FitzpatrickPatient and Public Engagement Lead, UCL Institute of Health Informatics

Tel: 020 3549 5326

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