“Researchers should regard patient participation as vital”

Global update

Author: Scarlett SherriffPublished: 19 May 2022

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Researchers from the Netherlands and the US are calling for patients to be more involved in structuring Parkinson’s studies

Researchers from Radboud University Medical Centre in the Netherlands and the Michael J Fox Foundation have released a ‘call to action’ for people with Parkinson’s to get involved in the design and execution of clinical studies related to the condition.

The researchers acknowledged that while ‘participatory research’ (the inclusion of patients in the structuring of clinical studies) has been increasing for decades, there still exists a gap in knowledge around the best methods for and impact of patient involvement.

Therefore, the authors – led by Dr Marjan J Meinders, senior research fellow at Radboud – set out to “present the lived experiences of patient researchers living with Parkinson’s disease, as a motivation for the value of their perspectives in research”.

The call to action was partly informed by the experiences of US co-authors Dr Anne C Donnelly and Margaret Sheehan, who both live with Parkinson’s, and who participated in a project aimed at factoring patient preferences into the design of a clinical trial.

“Apart from a strong ethical imperative that research for patients should be designed and executed together with patients, evidence demonstrates the potentially positive impact,” wrote the authors. “Including patients can help ensure that protocols are tolerable and that the trial outcomes actually matter to patients.”

Addressing Parkinson’s needs

The researchers proposed a series of measures to make the process of getting involved in research easier for people with Parkinson’s.

These include holding online calls for those who have difficulty travelling, allowing opportunities for patients with quiet voices to repeat themselves – and using handouts to aid people with a diminished ability to concentrate.

They also highlighted the importance of taking measures to increase diversity in the condition, acknowledging factors such gender, ethnicity, race and severity of the condition.

The authors wrote: “All researchers should regard patient participation and co-creation in research as a vital aspect of learning and improving the value of research.”

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