Community Engagement

Community engagement in research is often defined as doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them.

It may also be referred to by patient and public involvement and engagement (PPIE) in the UK. In ISARIC, community engagement includes involving individuals, or groups of individuals, who are impacted, adjacent to, or interested in research activities. These may be patients, those with lived experience of a condition, and community members affected by a condition such as healthcare workers (who often may also be patients).

Get Involved

We want to hear from you! Learn more and get involved in our community engagement activities by contacting engage@isaric.org.

Visit the Opportunities page for information about ongoing community engagement activities that you can participate in.

Why is it important?

Patients and the wider community are at the core of what we do. It is therefore critical that we involve the views and opinions of those individuals in how we prioritise, design, and conduct our work. Community engagement can also greatly improve the relevance and impact of research – by increasing uptake of research initiatives by the community of potential participants and by addressing the needs of end-users of the research, to name a few benefits. Community engagement also gives back to the community through increasing the public’s understanding of the research process and of specific conditions.

Best practice

We have drawn our community engagement work from several guideline documents detailing good practice in this field. Namely, these include the NIHR guidelines for public involvement (UK standards) and the UNICEF minimum quality standards (international research standards).

NIHR guidelines for UK research

For UK-based research, we often adhere to the National Institute for Health and Care Research (NIHR) guidelines for research. Learn more.

UNICEF minimum quality standards

The UNICEF Minimum Standards and Indicators for Community Engagement were developed through an inter‐agency consultation process that engaged a large number of experts from around the world. Learn more.

Our work and case studies

Outbreak-related stigma

The stigma associated with infectious disease outbreaks can also make it difficult to stop the spread of an outbreak. 

Get involved

Why get involved (as a contributor)

There are many different reasons to get involved in research. You may:

  • have experience of a health condition that you want to share
  • know people with health conditions and want to advocate for them
  • have an interest in a particular condition and want to learn more about research being conducted in that area
  • want to make a difference to future research such as treatments
  • want to learn more about research in general

How it supports researchers

  • More relevant research
  • Ensure our work is inclusive to the needs to patients and the wider community
  • Increases our impact

What to expect

We work with communities in different ways, depending on the type of projects we are running. Some examples include:

  • One-off attendance at a workshop
  • Joining an advisory group
  • Collaborating as co-investigators

Most of our activities are held online, as we work globally.

Support for contributors

We offer tailored support for those we involve in our research. We want to ensure our research is as inclusive as possible, so you do not necessarily need any background knowledge for some of our involvement activities. At the beginning of your involvement we will always ask you if extra support is needed. Typically, contributors have specialised knowledge of a particular condition but may not know much about the research process. Therefore, there are a few areas of support which are often provided, including:

  • How research is conducted in the UK and globally
  • How do you run a clinical trial
  • How to write articles
  • How to review scientific information

Further support may be provided in specialised areas by our team members. If external support is needed, like a training course, we may also be able to fund this.

Current opportunities

Mpox Stigma Survey

Closing date - August 1, 2024

Mpox stigma happens when people look down on someone or treat them unkindly because they associate them with mpox (previously known as monkeypox). Learn more