Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher.
Manjula Manikandan, Kevin Foley, Jessica Gough and 7 others
PMID 36188919WHAT IT FOUND
Five adults with cerebral palsy helped shape a doctoral study on their health services.
They reviewed materials for accessibility, suggested plain language changes, and helped plan how to share results. Their input made the research more relevant to people with lived experience.
Key findings
01Contributors reviewed study materials to ensure they were accessible, leading to the creation of Easy Read versions and plain English documentation.
02Contributors advised on terminology changes, such as replacing 'caregiver' with 'support person', to better reflect the reality of paid and unpaid care.
03Remote meetings during the pandemic allowed contributors to participate from comfortable environments without needing to arrange transport or personal assistants for commuting.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study reports the perspectives of only five contributors and one doctoral researcher, so it cannot show if these experiences are typical for other people with cerebral palsy. The impact of PPI is based on the researchers' own reflections and the contributors' reports, not on objective measures of research quality. The paper describes a specific doctoral project, so the recommendations may not apply directly to clinical service delivery or other types of research. Ethical approval was not required because contributors were treated as collaborators rather than participants, which may limit the generalizability of the consent and support processes described.
Declared interests
The authors declared no commercial or financial conflicts of interest. The work was funded by the Royal College of Surgeons in Ireland through the SPHeRE and StAR programmes.
The easy way to misread this
Do not interpret this as evidence that involving patients improves clinical outcomes or research validity. This paper describes one person's doctoral experience and the contributors' views on that process. It does not prove that PPI makes research better or that these strategies work in other settings.