1. Patient & public involvement in
applied health research
Sabi Redwood
PCCS / Collaborations in Leadership
in Applied Health Research and Care

2. What is PPI?
Ways in which patients can draw on their
experience and members of the public can apply
their priorities to research, and the
evaluation, development and organisation of
health and social services
– Patients/ service users as individuals
– Community organisations and carers on
behalf of others
– Members of communities, localities and the
general public
(Tritter 2009)

3. PPI as a mechanism for
• dialogue between different stakeholders in order
to the co-produce knowledge and services
• accountability to ensure local service meet the
needs of local communities and patients/ service
users
• for driving change in the culture of health and
social care services and redefining the
relationship between communities and the state

4. PPI in the research process
Identifying and
prioritising
Evaluation
Implementation
Dissemination of
research findings
Analysing and
interpreting the data
Design
Development of the grant
application
Undertaking and managing
the research

5. Identifying and prioritising
• Through local user groups and organisations
to help inform research priorities
• Consultation about research topics and
priorities, important to them as service users
• Collaboration with researchers to identify
topics for research
• User generated/ led topics for research

6. Design
• Clarify the research question and affirm its
importance/ relevance
• Ensure the methods selected are appropriate
for patients
• Assist in creating a recruitment strategy
• Review and comment on proposed data
collection methods

7. Development of the grant application
• Who/ why and how?
• Help to ensure that the research proposed and
chosen methods are acceptable/ ethical
• Define outcome measures
• Advise on the appropriateness of the lay
summary
• Raise awareness about costs of
involvement, expenses and prompt researchers
to cost for involvement
• Be named as co-applicants

8. Undertaking and managing the
research
• Part of steering group to manage / monitor
the research
• Assist in writing the patient information and
consent forms
• Produce research updates that are patient/ lay
friendly
• Can assist in conducting interviews and
surveys

9. Analysing and interpreting the data
• More appropriate for user led approaches
especially in relation to seldom heard groups
(for example sex workers)
• Assist the research team in developing themes
from data
• Consultation to verify research team’s
interpretation of data

10. Dissemination of research findings
• Advise on different avenues for disseminating
results
• Jointly present the findings with researchers
• Write information for local patient / groups
hospitals etc
• Assist in getting results / findings published on
charities / voluntary organisations websites
• Help distribute results within their information
networks
• Produce summaries of findings

11. Implementation
• Increase the likelihood that results of research
are implemented, by adding validity to the
findings
• Develop patient information for new services /
interventions within hospitals, GPs surgeries
etc

12. Evaluation
• Continued involvement with the study to
maintain focus and address issues as they
arise
• Collaborate with researchers to evaluate the
research process

13. Personal observations
• Political not just technical or procedural issue
• Requires supportive infrastructures
• No persuasive evidence that it leads to
‘better’ research, but maybe benefits are not
measurable
• Benefits to individual PPI partners not enough
• Importance of the move from individual story
to collective voice

14. Support for researchers
• Research Design Service
• INVOLVE publicly funded national advisory
group, which promotes and supports greater
public involvement in health research
• Development of local infrastructures – work in
progress