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Public and Patient Involvement and Engagement

For researchers in Health Sciences in particular, active and meaningful involvement of the public and patients can help to substantially influence health and social care services through planning, commissioning, developing and decision-making in public services.

This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.

Definition of PPI

INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the
public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.


When using the term ‘public’ this include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.

What Public Involvement is not

Researchers and others use different words to describe public involvement, for example words such as engagement and participation. In this publication when we use the term ‘public involvement’ we are not referring to researchers raising awareness of research, sharing knowledge or engaging and creating a dialogue with the public. We are also not referring to the recruitment of patients or members of the public as participants in research. However, these different activities – involvement, engagement and participation – are often linked and although they are distinct can complement each other. For example, the public can and do play a valuable role in advising on recruitment of patients as participants and on ways of engaging with the public.

Key Resources for researchers wishing to undertake PPI

Involve

Established in 1996 Involve is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world.

As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.

Briefing Notes for Researchers - this provides a very thorough and useful guide to undertaking PPI in research and can be viewed on line or downloaded as a PDF.

Involve Newsletter sign up

University Hospitals Coventry and Warwickshire

The R&D Team are a dedicated team of R&D professionals committed to developing research within the Trust.

The Trust’s mission statement is Care, Achieve and Innovate as research into new treatments and interventions means that their patients benefit from the latest evidence-based practice.They work in partnership with Universities, industry and other partners to develop research within the Trust.

UHCW is establishing its reputation as a leading institution for research. The Research & Development team provides advice on PPI as well as all otehr aspects of clinical research including:

  • Registration
  • Ethics and approvals
  • Governance
  • Statistics and design support
  • Randomisation Service
  • Intellectual property
  • Good research practice
  • Honorary contracts
  • Applying for research funding

For any queries relating to Patient Involvement please contact: Research.ppi@uhcw.nhs.uk

 National Institute for Health Research (NIHR)

Every year, more than half a million people help the NHS to improve healthcare and develop life-saving treatments by taking part in health research. The NIHR provides funding for UK Health Research, as well as a range of support including;

  • Access to expertise and collaboraitons
  • Access to facilities and running studies through the NHS
  • Training
  • Research and Impact studies
  • Strategic support
  • Patient and public point of view on why and how they can get involved in research


NCCPE

The National Co-ordinating Centre for Public Engagement (NCCPE) has an international reputation for inspiring and supporting universities to engage with the public.

Public engagement is a term that is widely used in a variety of sectors, from arts and heritage to science policy and local government. Whilst in some sectors it has a precise definition, in others it is used more flexibly. Following a consultation with colleagues across the higher education sector, the National Co-ordinating Centre for Public Engagement (NCCPE) has chosen to define public engagement broadly, to encompass the many and varied ways university staff and students engage with others outside the institution. There are a whole family of different types of engagement, for instance 'civic' or 'community' engagement, which are part of the same family.