Patient and Public Involvement Engagement and Participation (PPIEP)

PPIEP in the Mission

What is PPIEP?

Below is the National Institute for Health and Care Research (NIHR) definition of the ways people get involved in research, showing how ‘involvement’ is distinct from ‘engagement’ and ‘participation’:

The MHM aims to create a fresh understanding of mental ill health which is sensitive to the priorities of patients, their families, clinicians, researchers and of industry, to create a unity around the alignment of research and treatment priorities.

Research provides evidence about what works best. Patients, service users and health & social care professionals all use this evidence to make decisions about treatments and care.

Outcomes of research can shape what research is carried out in the future, how it is carried out and how the results are shared and put into practice.

There is a global consensus that people with lived experience of a mental health conditions can play an important role in influencing policy and processes, leading and co-leading projects alongside researchers.

Involvement

Being involved in research is not the same as taking part in research.

Involvement is when a member of the public works together with a research team to design and run a study. The public’s contribution ensures that research and outcomes are relevant to and meet the needs of patients, carers and the public.

Public contributors ensure that research materials are easy to understand and the research process has been well thought out before the recruitment of potential participants.

The MHM recognises that substantial work is needed to understand the perspectives of multiple stakeholders and continues to develop a framework for their collaboration within the workstreams and demonstrator sites.

The MHM works hard to ensure patients and their families have the opportunity to be heard and drive change. Those who experience or who are at risk of mental illness are well placed to recognise what works well in their care and identify what changes would make a difference to patients both now and in the future.

Patient’s knowledge from having experienced their own care, or the care of others is of great value to researchers.

Public contributors are not expected to have technical knowledge of how research works.

Key contacts for PPIEP in the Mission

PPIEP Geographical Map

Resources for Researchers

A key question for researchers is ‘What will involvement do for me?’

Benefits of involving public contributors include the stimulation of new ideas through conversations with people with lived experience, challenging assumptions and helping researchers identify potential problems in study design.

The following resources support researchers who want to include PPIEP in their research:

• The article, “Innovating public engagement and patient involvement through strategic collaboration and practice”, explores the benefits of working collaboratively in PPIEP

• The NIHR’s webpage, “Briefing notes for researchers – public involvement in NHS, health and social care research”, provides guidance for researchers news to public involvement

• These guidelines “Ethical Practice Guidelines for Public Involvement and Community Engagement”, created by the NIHR Applied Research Collaboration North East and North Cumbria, supports researchers, public contributors and anyone interested in health and care research to work towards ethically sound research practice.

Our MHM PPIEP activity includes:

• Regularly gathering input from stakeholders including patients, healthcare professionals and industry partners to ensure the project remains responsive to their needs and perspectives
• Learning from others, nationally and internationally
• Co-producing research with patients, the public and their families, alongside clinicians, researchers and industry, involving everyone early and throughout
• Ensuring that those underrepresented in research, at most risk of mental ill health, and those from seldom heard and inclusion health groups are involved equitably
• Recompensing people for their involvement, publishing openly with ‘plain English’ versions, and recognising all contributors
• Coordinating all PPIEP across the MHM workstreams and demonstrator sites, connecting activities across the MHM and MH-TRC infrastructure.

We are committed to an inclusivity framework that emphasises:

• Engaging with a diverse range of patient groups, ensuring representation from various cultural, socio-economic, and age demographics.
• Training for staff and researchers on cultural sensitivity and unconscious bias to promote inclusive practices.
• Developing materials and communication strategies that are accessible and respectful of different cultural backgrounds and literacy levels.
• Active engagement with community leaders and advocacy groups
• Understanding the unique needs and preferences of different cultural groups.
• Facilitating outreach efforts and building trust within diverse communities.
• Ensuring that the project’s interventions and communications are culturally appropriate and effective.

Read more about Equality, Diversity and Inclusion.

PPIEP News and Events

Visit the Patient and Public Involvement News and Events page for upcoming public events and the latest PPIEP news articles.