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Resources

Patient and Public Involvement

Patients have helped shape CogStack since 2017, starting with focus groups at King’s College Hospital that explored patient views on using de-identified data for research, including its benefits, concerns, consent and participation.

Patient groups have since formed at other CogStack sites, including SLaM, GSTT and UCLH. Participants supported using health records for research that benefits patients, and we continue to work with them and regulators to make sure AI is used responsibly.

Workshops and Focus Groups

Artificial Intelligence Showcase: AI, Genomics and the Patient Journey 2024

CogStack’s October symposium: Artificial Intelligence Showcase: AI, Genomics and the Patient Journey, delves into aspects of AI use in healthcare, how it is applied and how this can benefit patients and clinicians. Leaders of patient representation groups will discuss the transformative potential of actively involving patients and the public in clinical research, effective implementation strategies, and the impact on research quality and patient outcomes. Find out more and register.

Education & Training

HealTAC Patient & Public Involvement Advice Clinic “Patient and Public Involvement and Engagement (PPIE): Hands on Guidance for Clinical Text Analytics”

PPIE plays a vital role in helping to improve research and is now a crucial part of funding applications.

Education & Training

HealTAC Panel Session “How does PPIE add value in text analytics research?”

In this special panel discussion, four different stakeholders discussed how patient and public involvement adds value to research using health care text analytics and natural language processing.

Co-production of Patient and Public Facing Materials

“Your medical records can save lives” poster and information leaflet for patients

Patient facing materials were produced by King’s Electronic Records Research Initiative (KERRI) to highlight use of patient data at King’s College Hospital for research

Co-production of Patient and Public Facing Materials

CogStack Information Leaflet for patients

In autumn 2022 the research team led by Professor Liz Sapey at University Hospitals Birmingham NHS Foundation Trust co-designed with patients an information leaflet “What is CogStack and how can it help improve hospital care?”

Workshops and Focus Groups

Donated Databank of Clinical Free Text

Building on our previous work which involved a series of focus group interviews with stakeholders to find out their views about a donated databank.

Workshops and Focus Groups

Donated databank of clinical free text to develop and train NLP tools for research

The research team carried out a series of stakeholder in-depth focus groups interviews, including patients and members of the public

Workshops and Focus Groups

Workshop on attitudes to the creation and use of artificial health records for research

Including synthetic text, held in conjunction with the NIHR Maudsley BRC.

Workshops and Focus Groups

Public consultation to inform and support the ethical approval and governance process for the use of CogStack for EHR Research

A response from the CogStack clinical and academic research team to a discussion on issues concerning consent and use of health data for research.

PPIE 2023 (AI Award, Round 2, Phase 3)

Patients and end-users will be involved in the project via a project-specific inter-NHS Trust Patient, Clinician and Staff Involvement Group (PCSIG).

Patient-led Committees and Governance

University Hospitals Birmingham NHS Trust PIONEER Data Trust Committee

The committee consists of a group of patient and public members who review all data access requests, provides public oversight of data access decisions and reviews draft grant applications.

Patient-led Committees and Governance

South London and the Maudsley (SLaM) Clinical Record Interactive Search (CRIS) service user groups

he research team regularly seeks input and advice from the SLaM CRIS service user groups and expert patients from the CogStack oversight group

Patient-led Committees and Governance

Guy ’s and St Thomas’ Electronic Records Research Interface (CRAG) committee

Similar in function and structure to KERRI, the CRAG committe reviews, CogStack @ GSTT clinical research projects, providing PPIE steering governance and oversight of usage of NLP on GSTT data within CogStack.

Patient-led Committees and Governance

King’s Electronic Records Research Initiative (KERRI) committee

South London and the Maudsley: The KERRI committee consists of 3 leading institute clinicians, 1 clinical director for data science and 3-4 patient representatives and meets every 2 months to review projects.