How we assist research

The group assists researchers in ensuring that patient and carer perspectives and needs are considered within Motor Neurone Disorders research.

The group aims to

  • enable patient and carer perspectives to be heard

  • provide knowledge for the researchers from the individual’s experience and contribution

  • identify and prioritise research topics that are important to patients

  • improve recruitment to research studies

  • help in identifying improved measures for research outcomes

  • build public credibility and trust in clinical research, and improve external evaluations

  • assist in identifying any barriers to effective involvement

  • comment on research project documentation

  • help write lay summaries for research proposals and Research Ethics Committees

Members of the group have experience of being on trial steering committees and have been involved in project design, development and implementation stages of research studies.

Integrating public and patient involvement (PPI) into your research study can greatly increase your chances of getting a quality project through the funding, recruitment and dissemination of findings process.