JMIR Publications

ABSTRACT

Background:

Information stored within electronic health records is often recorded as unstructured text. Special computerised natural language processing (NLP) tools are needed to process this text, however complex governance arrangements make such data in the NHS hard to access and therefore it is difficult to use for research in improving NLP methods. The creation of a donated databank of clinical free text could provide an important opportunity for researchers to develop NLP methods and tools and may circumvent delays in accessing the data needed to train the models. However, to date, there has been little or no engagement with stakeholders on the acceptability and design considerations of establishing a free text databank for this purpose.

Objective:

To ascertain stakeholder views around the creation of a consented, donated databank of clinical free text to help create, train and evaluate NLP for clinical research, and inform potential next steps for adopting a partner-led approach to establish a national, funded databank of free text for use by the research community.

Methods:

Online in-depth focus group interviews were carried out with four stakeholder groups (patients and public, clinicians, information governance leads and research ethics members, and NLP researchers).

Results:

All stakeholder groups were strongly in favour of the databank and saw great value in creating an environment where NLP tools can be tested and trained to improve their accuracy. Participants highlighted a range of complex issues for consideration as the databank is developed, including communicating the intended purpose, the approach to access and safeguarding the data, who should have access and how to fund the databank. Participants recommended that a small-scale, gradual approach is adopted to start to gather donations and encouraged further engagement with stakeholders to develop a roadmap and set of standards for the databank.

Conclusions:

These findings provide a clear mandate to begin to develop the databank and a framework for stakeholder expectations which we would aim to meet with the databank delivery.