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Hearing the patient voice for persistent pain intervention development: recommendations for using a bespoke online discussion forum for qualitative data collection

Woodcock, Charlotte, Cornwall, Nicola, Harrisson, Sarah A, Jinks, Clare, Buttery, Alison, Ashworth, Julie, Mallen, Christian D, Dikomitis, Lisa (2024) Hearing the patient voice for persistent pain intervention development: recommendations for using a bespoke online discussion forum for qualitative data collection. British Journal of Pain, 18 (6). pp. 461-471. ISSN 2049-4637. E-ISSN 2049-4645. (doi:10.1177/20494637241254098) (KAR id:106753)

Abstract

Introduction

Understanding patients’ experiences is important when developing interventions for people living with persistent pain. Interviews and focus groups are frequently used to capture beliefs, views, and perspectives. These methods often require a commitment to a predetermined date and time that may present a barrier to participation. An asynchronous online discussion forum, specifically designed for research purposes, provides an alternative and potentially more accessible method for participation. In this article we discuss a bespoke online discussion forum, the Q-PROMPPT blog, as a case example.

Methods

We describe how we developed the Q-PROMPPT blog, with patient and public involvement, and its use as an innovative method for qualitative data collection in the context of developing an intervention for patients prescribed opioids for persistent pain. Drawing on our experiences we discuss the following areas: planning and design, participant recruitment and registration, and participant experience and engagement.

Results

We identify and address key concerns for each area of the Q-PROMPPT blog: planning and design: choosing software, assigning roles, designing the interface to promote usability; recruitment of participants: recruiting eligible participants, participant anonymity; participant experience and engagement: mitigating risk of harm, facilitating discussions, planning for forum close.

Conclusion

Based on our lessons learnt, we outline recommendations for using a bespoke online discussion forum as a qualitative method to inform intervention development for people living with persistent pain. These include collaboration with information communication technology teams, co-design with patient and public partners, minimising risk of imposter participants and developing trust and online community identity.

Item Type: Article
DOI/Identification number: 10.1177/20494637241254098
Additional information: For the purpose of open access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission.
Uncontrolled keywords: Chronic pain, intervention development, netnography, online methods, primary care, person-based approach, patient and public involvement, qualitative methods
Subjects: H Social Sciences
R Medicine
Divisions: Divisions > Division of Natural Sciences > Kent and Medway Medical School
Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Funders: National Institute for Health Research (https://ror.org/0187kwz08)
SWORD Depositor: JISC Publications Router
Depositing User: JISC Publications Router
Date Deposited: 02 Aug 2024 13:16 UTC
Last Modified: 02 Dec 2024 12:20 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/106753 (The current URI for this page, for reference purposes)

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