J Chubb - University of York

The Importance of Patient and Public
Involvement in research
Jenn Chubb
Research Innovation Officer
What is PPI in research?
• Research which is done with or by patients and
the public, rather than to, for or about them
• Involvement in research refers to an active
partnership between researchers and patients
and the public in the research process
• Patients and the public have a decision-making
impact on one or more stages of the research
We have a commitment to:
• Delivering on the University of York Research
• The Impact Agenda in Higher Education:
Funding and Assessment
• University Public Engagement Manifesto
• Concordat for Engaging the public with
• Training and Development: Concordat for
Career Development of ECRs
The ‘Foundations’ of the University of
York Research Strategy
Research Excellence
International Perspective
Collaboration and Partnership
The Dept of Health Sciences has established the PPI Committee to "Share,
build and improve PPI practice within the Department of Health Sciences”
The Impact Agenda: funding and
Manifesto for Public Engagement
• “We are committed to sharing our
knowledge, resources and skills
with the public, and to listening to
and learning from the expertise
and insight of the different
communities with which we
engage. We are committed to
developing our approach to
managing, supporting and
delivering public engagement for
the benefit of staff, students and
the public, and to sharing what
we learn about effective practice.”
• “The Engaged
University” - UoY
Concordat for Engaging the Public
with Research ( RCUK)
• A set of principles drawn up by the funders of
• UK research organisations have a strategic
commitment to public engagement
• Researchers are recognised and valued for their
involvement with public engagement activities
• Researchers are enabled to participate in public
engagement activities through appropriate
training, support and opportunities
Training and Career Development
What do we mean by patients and
the public?
• This encompasses a wide variety of people, groups and
life experiences. INVOLVE definition:
• “Patients and potential patients; people who use
health and social services; informal carers;
parents/guardians; disabled people; members of the
public who are potential recipients of health promotion
programmes, public health programmes and social
service interventions; organisations that represent
people who use services”
• It is acknowledged that this definition is very broad…
Why is PPI in research important?
• The epistemological argument: patients and the
public have knowledge of their own illness,
disease or health condition that can be of benefit
to researchers, who may not have first-hand
experience themselves of the issue they are
• The moral imperative: patients and the public
have the right to be involved in any publiclyfunded research that may impact on their health
status or the services that they receive
Importance of PPI
• The consequentialist argument: PPI has the
potential to improve the quality, relevance and
impact of health research, whilst also improving
the transparency of the process and the
accountability to the wider community of the
researchers themselves
• The policy imperative: PPI is currently
Department of Health and NIHR policy, so
funding often depends on getting PPI right at the
grant application stage
3 Levels of PPI
• Consultation (where researchers seek the views
of patients and the public on key aspects of the
• Collaboration (an on-going partnership between
researchers and patients and the public
throughout the research process)
• ‘Publicly led' (where patients and the public
design and undertake the research and where
researchers are only invited to participate at the
invitation of patients and the public)
Why do it?
• UoY is interested in meaningful PPI in the design
and conduct of research
• Increases feedback and enriches research
• Increases funding and research income
• PPI helps to promote excellent research
• Contributes to the impact agenda and knowledge
• NB: Do good PPI- ensure informed consent at all
stages, uphold robust ethical governance
Support at University of York
• PPI departmental committee, Health
• Research Development Team: Research and
Enterprise: Rachel Curwen, Josine Opmeer
• Research Policy: Lizzie Garcha
• Training and Development: Jenn Chubb
• References: