We believe that the voices of patients and the public are essential in shaping impactful research. Patient and Public Involvement and Engagement (PPIE) ensures that those living with Parkinson’s are not just participants in research but active partners. This approach leads to better research outcomes, meaningful results, and innovations that truly address patient needs.

Contents

  1. What is PPIE?
  2. Why does PPIE matter?
  3. How does PPIE make a difference to research?
  4. Our PPIE commitments
  5. Get involved
  6. Get in touch

What is PPIE?

PPIE stands for Patient and Public Involvement and Engagement. It’s a way to involve individuals affected by Parkinson’s—including patients, caregivers, and community members—in research planning, decision-making, and evaluation.

Patient Involvement: Patients actively collaborate in the research process, providing insights, ideas, and feedback.

Public Engagement: Sharing research progress and findings in accessible ways to inform and inspire the broader community.

Why does PPIE matter?

PPIE emphasizes collaboration, inclusivity, and mutual respect, ensuring that research addresses real-world needs. The key principles of PPIE include:

  • Inclusivity: Engaging diverse voices and perspectives.
  • Co-production: Working together as equal partners.
  • Transparency: Communicating clearly about research goals and outcomes.
  • Respect: Valuing the experiences and insights of everyone involved.

These principles guide our approach and ensure that our work aligns with the priorities of the Parkinson’s community.

How does PPIE make a difference to research?

PPIE helps to:

  • Improve research quality: patients bring lived experiences that help researchers ask the right questions and design better studies.
  • Address real needs: involving patients ensures that research focuses on the priorities and concerns of the Parkinson’s community.
  • Foster trust: transparency and collaboration build trust between researchers and the public.
  • Empower patients: PPIE empowers individuals to influence research that impacts their lives.

Our PPIE commitments

At Cure Parkinson’s, we pledge to:

  • Listen: Respect and value every contribution.
  • Include diverse voices: Ensure representation from underrepresented groups.
  • Communicate transparently: Share how your input influences research.

Get involved with PPIE!

Would you like to join us as a patient or public contributor? Here are some ways you can participate:

  • Join our patient council: help shape our research agenda and provide feedback on ongoing projects.
  • Share your story: Share your experiences to inspire and guide researchers.
  • Participate in events: Attend workshops, focus groups, and community meetings.

Get in touch

Ready to get involved or learn more? Reach out to our PPIE lead, Anaya: 

Email Anaya

Together, we can make research more inclusive, impactful, and patient-driven. Join us in shaping the future of Parkinson’s research!