Patient & Public Involvement in research
Support for Researchers Working with Public & Patient
Groups
Susan Hrisos, Senior Research Associate
& Dave Green, PPI representative
May 2014
Format of session
• Introduction to Patient & Public
Involvement in Research
• Experience of ‘doing’ PPI
– Researcher
– PPI representative
• Interactive session
– Small group work
Patient & Public Involvement (PPI)
• Huge increase in the involvement of patients in
improving their health & healthcare in recent decades
– Examples: shared decision making; self-management of chronic
illness; development of healthcare policy, clinical guidelines & patient
literature
• Evidence of benefit from involvement in healthcare:
– active participation during consultations is associated with better
health outcomes (Kaplan 1989; Kaplan 1996)
– increased involvement improves aspects of medical care (Atkin 1998;
Liaw 1996)
– involvement improves treatment compliance (Bibowski 2001)
PPI in improving Research
• Historically patients & public have not had a large
influence on research prioritisation or
commissioning, and have not been involved in the
research process
• Research can seem irrelevant to patient & public
needs
• Dissemination of findings to take too long
Patient & Public Involvement in Research
 PPI has become an important part of research activity & is
supported by government & health policy
– NHS Research Governance Framework (2010): patients should be “active
partners” in the research process
– INVOLVE: Unique national advisory group that promotes patient & public
involvement in research, supported by NIHR Central Commissioning
Facility. (INVOLVE www.invo.org.uk)
 Expectation of PPI contribution
that goes beyond “tokenism”
I.e. To have a more meaningful &
identifiable role, e.g. advising on research
proposals; assisting in project design
INVOLVE
• Unique national advisory group that promotes consumer
involvement in research
– Supported by NIHR Central Commissioning Facility
• “Involvement” = an active partnership between public & researchers in
the research process rather than the use of people as research “subjects”.
(INVOLVE definition. www.invo.org.uk)
– rationale for PPI is the production of research that will
• be more relevant to people & more likely to be used
• reflect the needs & views of the public
• be more likely to produce results that can be used to improve practice and
social care
– Promotes involvement in all aspects of the research process, including
•
•
•
•
Design of questionnaires & topic guides
Preparing patient information
Conducting interviews & focus groups
Analysing transcripts
Learning from experience
From novice to expert in 3.5 years.
PPI, research and learning curves
Reflections from the “Improving Patient Safety Project”
Susan Hrisos
Dave Green
Senior Research Associate
Patient Participant & PPI
research team member
This is independent research funded by the NIHR under its Programme Grants for Applied Research
scheme (RP-PG-0108-10049). The views expressed in this presentation are those of the author(s)
and not necessarily those of the NHS, the NIHR or the Department of Health.
NIHR Patient Safety Programme: “Improving patient safety
through the involvement of patients”
(Programme Lead: Prof. John Wright. Academic Lead: Prof Ian Watt)
Project 2: Bradford
 Patient error
Project 1: Bradford
reporting system
 Patient measure of
Project 3: Leeds
–
Lead:
Prof.
Gerry
organisational
Armitage
 Patient-centred
safety
training
– Lead: Prof. Rebecca
programme
Lawton
– Lead: Prof Vikram
Jha
Project 4: Newcastle
 Direct patient intervention to
reduce their risk of harm
– Lead: Prof. Richard Thomson
Core focus:
Development of userinformed approaches to
improving patient safety.
Programme PPI: Steering Structure
Annual Steering Seminar
2010 Programme research Day
2012 Research stream within PS Conference
2013 Scrutiny committee
Patient Panel meeting
6 monthly
3monthly informal meetings
Website & email fora
Newsletter
Panel
Chairs
Scientific Steering
YQSR group meeting
3 monthly
Progress meeting
3 monthly
Project 1 team meeting
2 monthly
PPI ‘pre-team meeting’ meeting
Ad Hoc interim PPI meetings
‘Business ‘emails
‘Maintenance’ emails
Dissemination activities
Project 4 team
meeting
2 monthly
Project 4 team
meeting
2 monthly
Project 4 team
meeting
2 monthly
Newcastle Project: Co-design
Newcastle Project: ‘Extra-curricular’ PPI
 Assistance with patient recruitment for interview
 Participant observation in a patient focus group
 Analysis of focus group transcript
 Co-facilitated a creative thinking workshop with PPI peers
 Development & design of ThinkSAFE intervention materials
 Local & national dissemination of study & developments
 Piloted patient focussed materials & data collection measures
Interactive Session
Research
Small group exercise
Your seedling research idea is awaiting
“involvement nitrate”
Task One (10 mins):
As a group …
• Discuss your research projects.
• Identify who might be your key
stakeholders.
Think about …
• Who do you need to involve & when?
• Where are they in the bigger picture?
• Why are they important?
Place your stakeholders on the diagram
Small group exercise #1
Task Two (5- 10mins):
Imagine that you already have a “Dave”
on your research team …
• What might his role be in enhancing stakeholder
engagement & involvement in your research?
• How can he help feed your research with their
perspective ?
• What research activities might he contribute to?
Place “Dave” on your diagram where you think
he has a role to play.
Write down what this role is at this place.
Task Three (5mins per group):
Feedback on one aspect of “Dave’s”
potential PPI contribution
Research Cycle
INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/
Task 2
In small groups discuss:
• What might involvement look like at the different
stages of the research cycle?
– How have/would you go about involving people?
– Who have/would you involve?
– Why involve - what impacts do you anticipate?
Prepare feedback on:
• Proposed PPI involvement at different stages
• Anticipated impact relative to proposed involvement
Feedback to full group (2-3mins)
Thank you!
Some challenges …
Patient Panel
Group dynamics & cohesion - variation in commitment
Communication between members between meetings
Expectations & clarity of PPI role
PPI understanding of research process & methods
Researchers
Inter-personal dynamics – managing relationships
Communication between meetings
Balancing PPI preferences for level or type of involvement
Managing expectations & having clarity of PPI role
Concerns about undermining research quality & rigour
Additional work load/demands on time
Some solutions …
Clarity of roles, expectations:
Terms of reference for PP & researchers
PPI Mentor
PP Training:
Research process
Research methodologies
Facilitating communication:
PP newsletter; PP website forum, PP email forum
Informal ‘coffee morning’ meetings
Increased contacts with researchers
Accepting that we might not always get it right