Recipient organisationNIHR University College London Hospitals Biomedical Research Centre
NIHR supportRecorded as supported by this research centre
PeriodJan 2025 — Jul 2027
In plain English
AI plain-English summary
A pregnant woman sits in a clinic, handed a leaflet about genetic tests for her unborn child, and has ten minutes to decide whether to take them. This research aims to replace that rushed, one-size-fits-all counselling with interactive digital tools—including AI—that give patients personalised information at their own pace. The problem is clear: face-to-face counselling is limited by time pressure, information overload, and language or cultural barriers, leaving many patients unable to make truly informed decisions. The team will first gather data through questionnaires, focus groups, and interviews with patients and healthcare practitioners, focusing initially on maternity and fetal medicine. They will then revise existing digital tools to make them more inclusive and user-friendly. In a separate collaboration, participants will test an AI platform that predicts the functional impact of genetic test results, to see if it helps explain complex findings and supports a value-based consent process. If successful, this work could transform how women receive information about tests and treatments, shifting from a hurried clinical conversation to a tailored, accessible digital experience that empowers genuine choice.
View original technical description
Informed decision-making is critical to ensure that patients feel empowered and educated about interventions, procedures, and potential treatments they are considering especially in the context of new tests and technologies that may be offered to investigate and treat conditions. For example, genetic testing of an unborn child has become more complex due to the increasing number of tests that can be offered. Face-to-face counselling, on the day, by a clinician is the most commonly used method, designed to help patients make informed choices and decisions, but there are limitations to this method. These include, but are not limited to, time pressures, patients feeling overwhelmed with medical information and language and cultural barriers. Providing interactive, digital information in varied formats, including the evolving use of artificial intelligence (AI) tools, may provide a novel and improved way of delivering patients more personalised and relevant information, empowering them to make truly informed decisions and consent. We want to collect data to support this idea (through short questionnaires, focus groups and interviews). This will cover gathering information about what exists currently and how people (both patients and healthcare practitioners) feel about this information in decision-making scenarios about interventions, treatments and diagnoses. We will initially focus on maternity and fetal medicine issues but hope to cover a range of Women's Health topics. This information will be used to revise and test currently existing interactive digital (internet) tools to ensure they provide relevant information in a different more ‘user-friendly’ format that is truly inclusive. Through a current collaboration, we will also ask participants to test out a platform that delivers AI-generated predictions of the functional impact of genetic tests to see if it can help with conveying/ describing these difficult results and incorporate a value based approach for cosent by asking a series of specfic questions.
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