Important Considerations for ADHD ‘Patient and Public’ Involvement and Engagement in Research

Main Article Content

Blandine French, Dr http://orcid.org/0000-0002-9395-5919 Anna Price, Dr Anita Salimi Abby Russell, Dr

Abstract

In this letter, we summarise key points of learning from research projects on attention deficit hyperactivity disorder (ADHD) that have had patient and public involvement and engagement (PPIE) as a key part of the research process. We share learning from our experiences in delivering research working with PPIE groups with ADHD, as top tips for researchers. Our aim is to highlight the importance of including lived-experience in ADHD research, share learning and highlight some of the (potentially invisible) differences in functioning that someone with ADHD can experience in relation to attentional focus, organisation, and time management. Specifically, how these might impact working practices of PPIE groups that include people with ADHD.


Lay summary: This research discusses the importance of involving individuals with ADHD in research and shares insights gained. It emphasizes the unique challenges faced by those with ADHD in terms of attention, organization, and time management, which might not always be apparent. The paper offers practical tips for researchers to better engage with ADHD groups, aiming to ensure that their experiences and perspectives are considered in the research process. In summary, it highlights the value of including firsthand experiences in ADHD research and provides guidance for researchers to enhance this inclusion.

Article Details

How to Cite
FRENCH, Blandine et al. Important Considerations for ADHD ‘Patient and Public’ Involvement and Engagement in Research. Medical Research Archives, [S.l.], v. 11, n. 10, oct. 2023. ISSN 2375-1924. Available at: <https://esmed.org/MRA/mra/article/view/4477>. Date accessed: 15 may 2024. doi: https://doi.org/10.18103/mra.v11i10.4477.
Section
Letters to Editor

References

Kaiser ML, Schoemaker MM, Albaret JM, Geuze RH. What is the evidence of impaired motor skills and motor control among children with attention deficit hyperactivity disorder (ADHD)? Systematic review of the literature. Res Dev Disabil. 2015;36:338-357. doi:10.1016/j.ridd.2014.09.023
2. Aiyegbusi OL, McMullan C, Hughes SE, et al. Considerations for patient and public involvement and engagement in health research. Nat Med. 2023;29(8):1922-1929. doi:10.1038/s41591-023-02445-x
3. Jackson T, Pinnock H, Liew SM, et al. Patient and public involvement in research: from tokenistic box ticking to valued team members. BMC Med. 2020;18(1):79. doi:10.1186/s12916-020-01544-7
4. Green SA, Evans L, Matthews R, et al. Service user engagement in quality improvement: applying the national involvement standards. J Ment Health Train Educ Pract. 2016;11(5):279-285. doi:10.1108/JMHTEP-02-2016-0011
5. Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;27(4):391-399. doi:10.1017/S0266462311000481
6. NIHR. National Institute for Health Research. PPI (patient and public involvement) resources for applicants to NIHR research programmes. Published online 2019. https://www.nihr.ac.uk/documents/ppi-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437