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Patient and Public Involvement and Engagement

We are passionate about patient and public involvement and engagement (PPIE) in research and the mutual benefits it brings. We see PPIE as fundamental to our support for research, beyond direct funding.

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What is Patient and Public Involvement and Engagement (PPIE) in research?

Patient and Public Involvement and Engagement is very different to participation in research - where patients or healthy volunteers take part in research as subjects.

By involvement we mean collaborating with patients and the public. This involves listening and responding to patient insight, where their views have the potential to influence the project, and their needs and priorities are reflected in the research. Involvement activities may include providing feedback and advice on study design, reviewing patient facing material and being part of a steering committee. Enabling involvement to be embedded throughout the research cycle is central to improving the relevance, quality and impact of studies, and is increasingly a prerequisite to securing funding and ethical approval.

Engagement is when information about research is shared with those affected by pulmonary fibrosis or the wider public, for example by hosting public talks, writing blogs or holding outreach events to publicise research. Typically in engagement activities, patients and the public do not have the opportunity to influence the research and may be listening to, or reading about the project.

Our commitment to involvement and engagement

APF supports the Health Research Authority (HRA), the National Institute for Health Research (NIHR), Association of Medical Research Charities (AMRC) and other organisations' 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

We believe we are able to make important contributions to research through involvement activities. APF and our community provide insight into the patient and carer experience throughout the research cycle. We work directly with individual researchers and as part of nationwide collaborations. We support research across all levels, from PhD studentships, to clinical trials, and appraisals for drug marketing authorisation.

Our Support for Researchers

APF is unique in its ability to connect researchers with people throughout the UK with lived experience of PF. We are committed to facilitating a high-quality experience for all involved, providing guidance and support to public contributors and researchers, ensuring the views of our community help shape the future of PF research.

We are able to offer you advice or answer questions you may have about involvement and engagement. If you would like to discuss the option of involving the APF community in your plans or to gain feedback on a proposal, we can help. Please beware aware that requests for support must be made in a timely manner. Contact us at research@actionpf.org

Resources

You may find it helpful to consult the following sources when developing involvement and engagement plans:

There are also free PPI training sessions for researchers online, for example:

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