We believe that patient involvement is crucial to the development of effective research, innovations and services.

Patient and Public Involvement and Engagement is very different to participation in research.

Participation in research is where patients or healthy volunteers take part in research as subjects.

Involvement in research is where researchers collaborate with patients and the public. This involves listening and responding to patient insight and can take place at all stages of the research life cycle:

  • Determining research priorities
  • Providing feedback and advice on study design
  • Collaborating on funding applications
  • Being part of a steering committee
  • Reviewing patient facing material

Enabling involvement to be embedded throughout the research cycle is central to improving the relevance, quality and impact of studies.

Engagement is when information about research is shared with those affected by Long Covid or the wider public. This can happen in many ways:

  • Public talks
  • Blogs and journal articles
  • Outreach events

Typically in engagement activities, patients and the public are finding out about research that has happened and they do not have the opportunity to influence the research. However, patients can also be involved in co-producing engagement activities, where they have been involved throughout the research project.

The Health Research Authority (HRA), the National Institute for Health Research (NIHR), Association of Medical Research Charities (AMRC) and other organisations' have written a statement on embedding public involvement in health and social care research.

Public involvement is important, expected and possible in all types of health and social care research. HRA, NIHR et al. June 2022.

Long Covid Support works directly with individual researchers and as part of nationwide collaborations. If you would like to find out more about ways to get involved in Long Covid research, please join the Covid-19 Research Involvement Group on Facebook or email us at .

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