Patients

Patients have guided the development of the CogStack platform and related projects since 2017 when the research team were preparing Cogstack. King’s College Hospital hosted focus groups with patients to discuss patient views on the use of de-identified data, the potential benefits of using hospital records for research, concerns and information priorities, the meaning of consent, and participating in research. 

Our work has paved the way for patient groups in hospitals with CogStack technologies like South London & Maudsley Hospitals, Guys & St Thomas Hospitals and University College London Hospitals, with patients being consulted the research agenda for their data.

Participating focus groups found support for using electronic health records for innovation and research for patient benefit, and we continue to work with patient groups and regulators to ensure AI technologies are developed and used responsibly.

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PPIE Category

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

uilding 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 & 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 & 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 & 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 & 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.
CogStack Information Retrieval & Extraction Platform

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