Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis

Rowbotham, N. J.; Smith, S. J.; Elliott, Z. C.; Leighton, P. A.; Rayner, O. C.; Morley, R.; Smyth, A. R.

Abstract

Background
The James Lind Alliance (JLA) method is well recognised for setting research priorities. The JLA approach involves a combination of surveys and workshop interactions between patients, carers and health care professionals to identify and agree on a “top ten” list of research questions. Respiratory infection is one of the hallmarks of cystic fibrosis (CF). To avoid cross infection, patients are advised not to meet face to face, preventing us following standard JLA methodology. Here we describe adaptations made during our recent JLA Priority Setting Partnership (PSP) in CF.
Methods
We elicited and prioritised research questions, using sequential online surveys, promoted through social media. People with CF participated in steering committee meetings and the final workshop, using videoconferencing. Alterations to workshop methodology enabled participants attending in person and those joining remotely, to contribute equally. We also altered the JLA methodology to include “lone” questions, asked by only one survey respondent. We are now working with the CF community to co-produce research projects that answer these top ten.
Results
There were 482 respondents, from 23 countries, who submitted 1080 questions. Increases in the number of responses occurred just after promotion on social media. Use of videoconferencing enabled participation of multiple people with CF and ensured participation from anywhere in the world, including hospital inpatients. Inclusion of lone questions resulted in one being included in our top ten.
Conclusions
There is no “one-size-fits-all” for patient involvement methodologies. Through altering the JLA methods to fit our patient group we achieved wide participation. We believe that methods used in our project may also be applied to future partnerships to increase participation, especially where people may be hospitalised or be unable to travel. The methodology we are developing through the JLA PSP CF2 project may be useful for other PSPs to follow.

Citation

Rowbotham, N. J., Smith, S. J., Elliott, Z. C., Leighton, P. A., Rayner, O. C., Morley, R., & Smyth, A. R. (2019). Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis. Research Involvement and Engagement, 5(1), Article 24. https://doi.org/10.1186/s40900-019-0159-x

• Journal Article Type: Article
• Acceptance Date: Aug 9, 2019
• Online Publication Date: Aug 20, 2019
• Publication Date: Aug 20, 2019
• Deposit Date: Aug 21, 2019
• Publicly Available Date: Aug 21, 2019
• Journal: Research Involvement and Engagement
• Electronic ISSN: 2056-7529
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 5
• Issue: 1
• Article Number: 24
• DOI: https://doi.org/10.1186/s40900-019-0159-x
• Public URL: https://nottingham-repository.worktribe.com/output/2456283
• Publisher URL: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-019-0159-x
• Contract Date: Aug 21, 2019