Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study
Emma Cockcroft, Vidhi Bassi, Pearl L. H. Mok, Alex Adams, Anabel A. Claro, Alex M. Trafford, Matthew J. Carr, Darren M. Ashcroft, Emma Garavini, Rachel Temple, Roger T. Webb, Shruti Garg, Carolyn A. Chew‐Graham · 2024
Read Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study by Emma Cockcroft, Vidhi Bassi, Pearl L. H. Mok, Alex Adams, Anabel A. Claro, Alex M. Trafford, Matthew J. Carr, Darren M. Ashcroft, Emma Garavini, Rachel Temple, Roger T. Webb, Shruti Garg, Carolyn A. Chew‐Graham (2024) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-11655915.txt.
Description
Emma Cockcroft and co-authors reflect on a craft problem: how do you involve patients meaningfully in research whose raw material is millions of anonymised health records? Their CHOOSE study used a national primary-care database to track young people's mental-health diagnoses through the pandemic. A lived-experience panel of eight young people and five parents or carers advised throughout, organised by a mental-health charity.
The panel sharpened interpretation and kept findings aimed at changing young lives. Friction came from the data itself, fixed and silent on things the panel cared about, and from researchers' scarce time, which the charity's facilitators absorbed. The authors recommend budgeting real time, training, and honesty about what involvement cannot change in database science.
Catalog record
| CREATOR | Emma Cockcroft, Vidhi Bassi, Pearl L. H. Mok, Alex Adams, Anabel A. Claro, Alex M. Trafford, Matthew J. Carr, Darren M. Ashcroft, Emma Garavini, Rachel Temple, Roger T. Webb, Shruti Garg, Carolyn A. Chew‐Graham |
|---|---|
| YEAR | 2024 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 35 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |