Multi-stakeholder event highlighted challenges in using standardised patient-reported outcome measures (PROMS) with low literacy and learning disabled populations

On Friday, 23 November hosted a well received dissemination event for a project funded as a Knowledge Transfer Project (KTP). The project was conducted in partnership between Healthcare Improvement Scotland and the Universities of Glasgow and Dundee. We have reported previously about this project and also presented a Webinar.
This project explored people’s views on ‘Patient Reported Outcome Measures’ (PROMs). These measures are health questionnaires patients complete in a clinic about their symptoms, health condition and current emotional Wellbeing. The NHS in England is using this set of very disparate measures to ascertain patient reported pre-post intervention effects for acute procedures such as knee and hip replacement surgery. The rationale is that these routinely collected data sources will inform decisions about health care improvement planning. Our project specifically focused on the accessibility of PROMs for people with low literacy and learning disabilities.
The research team has developed a guide that will help professionals to reflect about the appropriateness of using PROMS and how to administer them with assistance to avoid excluding people who may find it difficult to complete complex questionnaires. The guide is based on our discussions with patients and professionals about how PROMs could be made more accessible and easy to use. Eventually, the guide will be available on the NHS Knowledge Network website.
The event was used to launch the guide. We invited all stakeholders from many backgrounds, including service users with learning disabilities, health care practitioners, academics and policymakers. Around 30 people attended and listened and discussed four presentations, which were held by Richard Norris, Scottish Health Council; Deepa Jahagirdar, KTP Associate, Glasgow; Dr Eddie Duncan, University of Stirling; Dr Phyllis Easton, NHS Tayside and SDHI. The speakers focused on the role of PROMS in the context of Scottish Health Policy and Quality Improvement, the use of standardised outcome measures by clinical professionals, the invisibility of low literacy, and the PROMS project itself. We used several tools to ensure this event was accessible, inclusive and beneficial for everyone. For example, everyone had red and green cards. Attendees could use the red cards to stop speakers and ask questions and green cards to indicate the presentation was clear. Attendees were free to stop the presentations at any point, discuss the issues that were raised, and clarify points. This informality sparked interesting and informative discussion.
The dissemination event raised awareness about the NHS’ plans to use PROMs and the potential exclusion of people with low literacy and learning disabilities.

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