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What we do

Our approach to PPIE is built around four areas of work:

01 — Community partners as leaders

Community partners play a meaningful role in shaping decisions, setting priorities and guiding how iCARE data is used. We want communities to be involved not just in providing feedback, but in helping shape the direction of our work.

A critical part of this is ensuring community voices are represented in decision-making. Community Partners attend 100% of Data Access Committee (DAC) meetings, playing a key role in assessing whether proposed research is appropriate, in the public interest and likely to benefit patients and communities. Researchers cannot access data from the ICHT tenancy without DAC approval, ensuring that community perspectives and priorities are considered alongside clinical, research and governance expertise.

02 — Trusted community relationships

We build long-term relationships with local communities and organisations across North West London. This includes working with groups such as the Westminster Digital Inclusion Forum and Research Engagement Group to understand local priorities and create opportunities for meaningful engagement.

We work closely with the The Patient Experience Research Centre (PERC). 

03 — Understanding public perspectives

We listen to the views, expectations and concerns of patients and communities through surveys, conversations, workshops and other engagement activities. What we hear helps inform how we communicate, how we work and how health data is used for research.

Have your say: We are currently running a survey exploring public perspectives on the use of AI and digital tools in healthcare. []

04 — Building capability

We support iCARE staff and researchers to develop the knowledge, skills and confidence needed to involve patients and communities meaningfully throughout the research process.

We also provide resources and training to help patients and members of the public understand health data research, build their confidence and develop the skills to engage meaningfully in this space.