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Patient and Public Involvement in LOCOMOTION

Date

Our Patient Advisory Group (PAG) created the content for the animation video below. It outlines:

  • What Patient and Public Involvement (PPI) in research is and why it is important.
  • How PPI is integrated in LOCOMOTION through our PAG and a Patient Advisory Network.
  • The activities of the PAG and what this involvement helps achieve.

Visit our Patient and Public Involvement page to learn more about how PPI is embedded in the LOCOMOTION study.

Transcript of the video:

LOCOMOTION Study, Patient and Public Involvement (PPI). PPI means, members of the public with experience of a condition, working with researchers.

In LOCOMOTION, this helps ensure many things, such as:

  • The researchers understand what Long Covid is like.
  • The research is in the best interests of patients.
  • Material is easy for patients to read and understand.
  • Research papers contain accurate information.

LOCOMOTION has a Patient Advisory Group (PAG) with 8 people from different backgrounds and a Patient Advisory Network (PAN) made up of patients from the study’s Long Covid Clinics

Our PPI work on LOCOMOTION has included:

  • Conducting an audit of Long Covid Clinics.
  • Helping with study recruitment.
  • Participating in many video meetings alongside researchers.
  • Helping to write patient-facing material and guidance on Long Covid for GPs.
  • Helping to, analyse findings from interviews with patients, and analyse evidence in relation to what causes Long Covid.
  • Identifying additional research that will benefit patients.
  • And much more!

Having the patient voice at the heart of research helps ensure conditions are understood, and research is relevant and has an impact. Remember, there should be: ‘Nothing About Us, Without Us!’