Patient and public involvement in research
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People affected by eczema should have a meaningful voice in the research that aims to improve their lives.
At Eczema UK, we are committed to involving people with lived experience of eczema in shaping our research priorities, funding decisions and wider research activities. Their knowledge and experience help us support research that is relevant to the needs and priorities of the eczema community.
Our commitment to public involvement
Eczema UK endorses the Association of Medical Research Charities (AMRC) position statement on the importance of involvement in medical research.
We share AMRC's commitment to meaningful public involvement in high-quality medical research and to ensuring that the priorities of patients and the public help shape research and research funding.
For us, involvement means working in active partnership with people affected by eczema, rather than simply asking people to participate in research studies.
We aim for involvement that is purposeful, inclusive and accessible; values the knowledge and experience that people bring; gives people a meaningful opportunity to contribute to decisions; and ultimately helps research deliver outcomes that matter to people affected by eczema.
How people affected by eczema shape research
People with lived experience can contribute at different stages of the research process.
At Eczema UK, this can include:
helping to identify and prioritise important unanswered research questions;
reviewing research funding applications and contributing lived-experience perspectives that inform funding decisions;
commenting on research proposals and study materials;
advising researchers on the relevance and acceptability of proposed research;
helping researchers consider how people affected by eczema can be involved in their studies;
contributing to research governance and decision-making; and
helping communicate research and its findings to the wider eczema community.
We recognise that different research projects require different approaches to involvement. We therefore work with researchers and people affected by eczema to identify meaningful and appropriate opportunities to contribute.
Discover current opportunities to take part in eczema research, or to share your experiences.
Our Expert by Experience Group
Our Expert by Experience (EXEC) Group provides an important way for people affected by eczema to contribute to Eczema UK's research activities.
The Group brings together people with lived experience who are interested in helping to shape eczema research.
Members can contribute to activities including reviewing research funding applications and providing feedback on research proposals and study information.
Their contribution brings an important perspective to research assessment alongside scientific and clinical expertise.
Involvement in research funding
People affected by eczema contribute directly to our research funding programme.
Where appropriate, lived-experience reviewers consider research applications from a patient and public perspective alongside the independent scientific and clinical expert review process.
Their assessment can help us understand whether a proposed project addresses an important issue for people affected by eczema, whether the research is relevant and acceptable to the community it intends to benefit, and whether applicants have appropriately considered patient and public involvement.
These perspectives contribute to the information considered through our research funding process and by our Grant Advisory Panel.
Find out more about our research priorities
Inclusive and accessible involvement
We want opportunities to contribute to research to be accessible to people with different experiences and backgrounds.
We recognise the importance of hearing from a diverse range of people affected by eczema and of reducing barriers that can prevent people from becoming involved.
We will continue to develop our approach to involvement, learn from the people who work with us and explore ways of enabling a wider range of voices and experiences to contribute to our research activities.
Working with researchers
We encourage researchers to consider meaningful patient and public involvement throughout the research process - from identifying research questions and designing studies through to interpreting findings and communicating results.
Researchers who would like to involve people affected by eczema in developing their research can contact the Eczema UK research team to discuss appropriate opportunities for involvement.