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Do patients and the public understand and feel engaged and valued after reading outcome set study invitations? A UK
Heather Barrington1, Rebecca Craven2, Paula R Williamson2
1Health Data Science Department, University of Liverpool, Liverpool, UK Heather.Barrington@liverpool.ac.uk.
Background:
The use of core outcome sets (COSs) in health research is widely recommended. COSs are developed with input from key decision makers, patients being a vital group to ensure COS relevance. However, recruitment to COS studies can be challenging.
Objectives:
The study aimed to explore what patients and the public think of COS study invitations, which are usually the first document a patient reads about a COS study.
Design:
Qualitative study involving focus groups and interviews. Analysis of transcribed data drew on reflexive thematic analysis.
Participants And Setting:
Focus groups and interviews were conducted with a diverse range of patients and the public (n=31) from community and patient groups in North West England, exploring their perceptions of a sample of COS study invitations. Participants were eligible if aged over 18 years, they could speak English and had never previously participated in a COS study.
Results:
Themes identified included understanding, engagement, safety and accessibility. Participants were concerned about excessive information in the invitations which made them confused. Fear of cybercrime caused numerous concerns and participants were reluctant to click on links or attachments. Trust in the people sending the invitations was key. Participants wanted to see messages that COS studies had a meaningful purpose to feel their contributions were valuable. They were keen to contribute to improving future 'treatment' but less motivated to improve 'research'. Messages that evoked a feeling of connection with others who they could relate to were positively regarded. Participants also highlighted ways that invitations could be made more accessible.
Conclusion:
COS invitations can present numerous challenges for potential participants, but our study indicates ways that COS developers can address these challenges and make their invitations more appealing to potential participants. As part of the wider Good Research Invitation Study the findings have been used to inform guidance on designing a good COS invitation.
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