Lay review of the South London and Maudsley NHS Foundation Trust’s (SLaM) Clinical Records Interactive Search (CRIS) system website to better meet UK Heath Data Research Alliance Transparency Standards

• Published in: International journal of population data science 2024-05, Vol.9 (3)
• Main Authors: Jewell, Amelia, Woods, Hannah, Morrow, Liz, Booth, Alex, Davenport, Franca, Stewart, Robert
• Format: Article
• Language: English
• Subjects: Fair Processing; Mental Health; Patient and Public Involvement; Research Database
• ISSN: 2399-4908; 2399-4908
• DOI: 10.23889/ijpds.v9i3.2453

BackgroundThe South London and Maudsley NHS Foundation Trust (SLaM) is one of the largest providers of secondary mental healthcare in Europe. In 2007, SLaM developed the Clinical Record Interactive Search (CRIS) system which provides authorised researchers with regulated, secure access to anonymised information extracted from SLaM’s electronic clinical records system1. CRIS has been very successful as a research data resource and has supported over 300 peer reviewed publications over its 15+ years of operation. The CRIS website (www.maudsleybrc.nihr.ac.uk/facilities/clinical-record-interactive-search-cris) was developed to provide information to SLaM service users, the general public, and prospective research users. The website includes information on what CRIS is, approved CRIS projects and publications resulting from CRIS projects, as well as detailed information on data linkages involving CRIS and on Natural Language Processing (NLP) algorithms as a resource. The website is the main source of information available to academic users prior to meeting with a member of the CRIS Team and is a large component of the wider CRIS communications plan which aims to ensure that all potential CRIS stakeholders can access relevant information about CRIS in several different formats. IntroductionWe planned to conduct a lay review of the CRIS webpages involving both SLaM service users, carers, and CRIS academic users. The lay review was designed to support with alignment against the following UK Heath Data Research Alliance (HDRA) Transparency Standards2: Standard 1: Open access application form and guidance Standard 2: Transparent application process and criteria Standard 3: Clear website navigation Standard 4: Consider Target Audience MethodsA lay review of the website was conducted with a group of five mental health service users and carers. The review was conducted in two stages, firstly, an individual in-depth review of two webpages per person with an online questionnaire, followed by a focus group. An academic review by two junior researchers was also conducted, this involved a review of the webpages and completion of an online questionnaire. ResultsThe online questionnaires and focus group suggested several improvements to the website. Feedback on each page was reviewed and compared against the UK HDRA Transparency Standards. A list of changes was drafted in consultation with communications colleagues. Changes were made to pages, including updating images, addin