Patient & Public Involvement

It is important when considering undertaking research within the NHS (and an essential requirement for most funding streams) that the views of patients and the public are sought and acted upon.

For audits and small pilot or start-up projects patient and public involvement (PPI) may be helpful but is not a necessity.

However, working in partnership with service users, informal carers and interested members of the public will greatly enhance the relevance and authenticity of major studies because of the unique insights they can bring to the planning process and beyond.

With careful thought the partnership can be beneficial through all stages of the research process.

There are many ways of accessing PPI for research. You do not have to find your own users but can approach established groups at local, regional or national level.

These include:

Local
  • Trust PPI groups – your R&D manager will have these contact details
  • Research network user/consumer/PPI reference panels
  • Local authority groups
  • Higher Education Institutes PPI groups
Regional
  • North West People In Research Forum
National
  • INVOLVE
The North West People in Research Forum is an organisation which is devoted to supporting patient and public involvement (PPI) and public engagement (PE) in health and social care research in the North West. They aim to:
  • Support researchers to involve and engage patients and the public
  • Support patients and members of the public who are, or wish to become, involved in health and social care research
  • Share learning about PPI and PE in research
  • Form a link between researchers and patients/public raise awareness about health and social care research in the Region and opportunities to get involved
Individual membership is open to patients, former patients, informal carers, members of the public, researchers, research commissioners, research administrators, research managers etc.

Corporate membership is open to NHS organisations, academic organisations, government agencies, commercial organisations, charities, patient/carer support groups etc.

INVOLVE is a Department of Health agency including experts in public participation who believe in a democracy where citizens are able to take and influence the decisions that affect their lives.

Through both research and practice they seek to radically transform the relationship between citizens and their governments to better use the creativity, energy, knowledge, skills and resources of all.

Experience and research has shown that when done well, public participation can help to:Identify solutions to complex problems
  • Improve the efficiency and effectiveness of public spending and services
  • Promote social cohesion and social justice, and overcome conflict
  • Build the confidence and agency of individuals and communities
  • Improve well-being and reduce social problems
INVOLVE have developed the care for public participation, produced practical guidance on how to engage effectively, explored innovative practices of engagement, and begun to understand how and why citizens engage.

Their research covers both the practice and theory of involvement and engagement and is grounded in their work and experience.