Useful Links

  • Involve is a UK-based national advisory group whose role is to bring together expertise, insight and experience in the field of public involvement in research, to advance it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.
  • Researchers from the University of Liverpool are leading a project to create a toolkit that pools resources and materials to help Patient and Public Involvement (PPI) in clinical trials.

What Happens to My Data in Research?

Myelopathy.org is committed to the use of responsible research methods to advance our understanding of myelopathy. All supported projects must adhere to our code of conduct, have appropriate regulatory approval, and be approved by our research committee.

These projects require your involvement if they are to succeed, as they rely on individuals sharing their experiences; however, individuals are often nervous about sharing their personal information and uncertain about how it is used.

The following video has been produced by Connected Health Cities and The Farr Institute, who worked with patients and members of the public across the UK to understand their questions about the use of patient data in research. Their short film explains how UK universities use patient data to improve health and care, and the measures they must take to ensure that your data remains safe and protected.

Myelopathy.org adheres to the Health Research Authority policy for good practice in the management and conduct of health and social care research in the UK. If you have any further questions about any of our research projects, please get in touch.