Patient Engagement Synapse

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I work at Parkinson's UK as a Research Involvement Manager coordinating the charity's Patient and Public Involvement (PPI) programme through which we support researchers from academia and industry to work with people affected by Parkinson's throughout all stages of the research process. A key area of my work is focused on supporting patient and public involvement in medicines R&D, facilitating partnership working between researchers from industry and people affected by Parkinson's. I also work closely with a number of external organisations, contributing to national and global initiatives to develop resources to advance involvement in research.

Organizations

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Parkinsons UK

Parkinson's UK is here to make sure people have whatever they need to take back control – from information to inspiration. We want everyone to get the best health and social care. So we bring professionals together to drive improvements that enable people to live life to the full. Ultimately, we want to end Parkinson's. That's why we inspire and support the international research community to develop life-changing treatments, faster. And we won’t stop until we find a cure. Together we can bring forward the day when no one fears Parkinson's.

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Conditions

Neurology/Parkinson's Disease

Initiatives (3)

  Supporting patient involvement in the development of new treatments Parkinson’s UK

Parkinsons UK

Global

  How-to guide for patient engagement in the early discovery and preclinical phases

National Kidney Foundation, Ottawa Hospital Institute of Research ,
+ 34

Global

Completed less than one year ago

  Patient Engagement Open Forum

PFMD, EUPATI, European Patients' Forum (EPF), Gilead Sciences ,
+ 16

Global

Currently underway

Events (3)

27

Jan08:00 AM

28

Jan06:00 PM

Patients as Partners Europe

KW
+ 8
United Kingdom

25

Jan09:30 AM

26

Jan04:00 PM

Patients as Partners Europe – Connecting Globally for Patients in Clinical Research

+ 5
Online

26

Jan01:00 PM

26

Jan02:00 PM

Patients as Partners Europe – Session on Newly Reported PFMD Guidelines on Incorporating the Patient Voice in the Pre-Clinical Phase

OB
+ 2
Online
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Resources (7)

Patient and public involvement: Guidance for researchers

20 Dec 2018

+ 6

WORKSHOP 1 How to engage patients in early development and preclinical phases of medicines development

23 Sep 2019

Supporting patient involvement in the development of new treatments Parkinson’s UK

04 Nov 2019 Book

+ 6

Working Group Updates 2020

11 Mar 2020 Framework/guidance

OB
+ 5

PEOF 2020-How to engage patients in the early stages-WG1-Slides and Recording

03 Jul 2020 Other

If Medicines Could Talk- Patient Focused Medicines Development - Early Stage Patient Engagement

16 Oct 2020 Podcast

DL
+ 61

Infographic of Patient Engagement Multi-Stakeholder Contributors' Network

04 Mar 2021 Fact sheet

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Commitments (6)

Natasha Ratcliffe

Research Involvement Manager

I will consult with our contributors to capture their experiences and learn what they want our Patient and Public Involvement programme to look like moving forward.

Work in progress
Natasha Ratcliffe

Research Involvement Manager

I will work with our contributors to develop training and resources to support them in their role.

Work in progress
Natasha Ratcliffe

Research Involvement Manager

I will share our achievements and ongoing work with the Research Support Network and the wider Parkinson's community.

Work in progress