Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action

Meinders, Marjan J.; Donnelly, Anne; Sheehan, Margaret; Bloem, Bastiaan R.

doi:10.3233/jpd-223190

Cited by 12 publications

(7 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“… 6 We therefore echo the calls for a broader and more accurate view of Parkinson’s through the use of diverse imaging and inclusive research participation. 27 , 28 , 29 , 30 While acknowledging that no single image can adequately reflect the diversity in background, phenotypes, and experiences in PD, it is important that images, both in public and in medical teachings, are consistent with the advances in Parkinson’s research and encourage discussion about how Parkinson’s is represented.…”

Section: Discussionmentioning

confidence: 99%

Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care

Göttgens,

Modderkolk,

Vermuë

et al. 2023

eClinicalMedicine

View full text Add to dashboard Cite

Section: Discussionmentioning

confidence: 99%

Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care

Göttgens,

Modderkolk,

Vermuë

et al. 2023

eClinicalMedicine

View full text Add to dashboard Cite

“…The inclusion of patients in the definition of research-agendas and study designs can improve studies’ feasibility, cost-effectiveness, and validity ( Schipper et al, 2014 ; Roudini et al, 2023 ). Sporadically, investigators pioneered patient engagement in PD studies and reported about this endeavor ( Meinders et al, 2022 ; Evers et al, 2023 ). Meinders and colleagues recently published general advice and experiences with patient engagement in PD studies, but specific reports on patient engagement for naturalistic monitoring studies with DBS patients lack, to our best knowledge.…”

Section: Current Literaturementioning

confidence: 99%

Improving naturalistic neuroscience with patient engagement strategies

Feldmann,

Roudini,

Kühn

et al. 2024

Front. Hum. Neurosci.

View full text Add to dashboard Cite

IntroductionThe clinical implementation of chronic electrophysiology-driven adaptive deep brain stimulation (DBS) algorithms in movement disorders requires reliable representation of motor and non-motor symptoms in electrophysiological biomarkers, throughout normal life (naturalistic). To achieve this, there is the need for high-resolution and -quality chronic objective and subjective symptom monitoring in parallel to biomarker recordings. To realize these recordings, an active participation and engagement of the investigated patients is necessary. To date, there has been little research into patient engagement strategies for DBS patients or chronic electrophysiological recordings.Concepts and resultsWe here present our concept and the first results of a patient engagement strategy for a chronic DBS study. After discussing the current state of literature, we present objectives, methodology and consequences of the patient engagement regarding study design, data acquisition, and study infrastructure. Nine patients with Parkinson’s disease and their caregivers participated in the meeting, and their input led to changes to our study design. Especially, the patient input helped us designing study-set-up meetings and support structures.ConclusionWe believe that patient engagement increases compliance and study motivation through scientific empowerment of patients. While considering patient opinion on sensors or questionnaire questions may lead to more precise and reliable data acquisition, there was also a high demand for study support and engagement structures. Hence, we recommend the implementation of patient engagement in planning of chronic studies with complex designs, long recording durations or high demand for individual active study participation.

show abstract

“…Stacey describes how Matthew advised her 'on things like providing larger buttons to press which are easier to use with their movement symptoms, as well as breaking up longer, difficult tests with shorter, easier ones and making text bigger and more readable' (see also Meinders et al, 2022). This fits with the wider literature on the importance of people with lived experience advising on the comfort of participants (Gowen et al, 2019), trialling research tools and having a role in training researchers (Lea et al, 2020).…”

Section: Background and Initial Contactmentioning

confidence: 99%

Parkinson’s from inside out: emerging and unexpected benefits of a long-term partnership

Sullivan

Poliakoff

2023

Research for All

View full text Add to dashboard Cite

This article is a personal reflection on a long-standing patient and public involvement (PPI) partnership between a person with Parkinson’s and a cognitive neuroscience researcher. They describe how the partnership arose, was established and evolved to produce unexpected benefits to the research and more broadly. Initially, working together helped to communicate the purpose of the research to a lay audience and to make lab-based testing sessions for people with Parkinson’s as comfortable as possible. They then worked together on the steering group for a research project about Parkinson’s and imitation, which led to co-designing interventions using imitation and imagination of movements to improve movements, including a dance class. Further benefits were realised through co-teaching undergraduate students about Parkinson’s, establishing a broader culture of PPI within the research lab and sharing their expertise of PPI more broadly. They consider key ingredients for successful collaboration, including shared curiosity, open-mindedness and trust, as well as the importance of informal discussion and space. Challenges are also considered, including authorship of research articles and anonymity. Their account demonstrates the value of the collaboration to research itself, but also the broader (often unexpected) benefits that can emerge when a collaboration has space and time to flourish.

show abstract

Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action

Cited by 12 publications

References 19 publications

Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care

Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care

Improving naturalistic neuroscience with patient engagement strategies

Parkinson’s from inside out: emerging and unexpected benefits of a long-term partnership

Contact Info

Product

Resources

About