Patient & Public Involvement in research
Support for Researchers Working with Public &
Patient Groups
Dr Susan Hrisos, Senior Research Associate, IHS
Dr Lynne Corner, FMS Director of Engagement
May 2016
EngageFMS
Patient and Public Engagement and Involvement
Format of session
• Rationale for Patient & Public Involvement
in Research
• National context & the NIHR Breaking
Boundaries review
• Examples of ‘doing’ PPI
• Interactive session
– Small group work
First – a little bit about you …
• Who you are
• What you are up to
• What you hope to get out of today
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, Bibowski 2001)
– involvement improves patient safety (Hrisos & Thomson, 2016 in
press; 2013)
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 in research has become an important part of research activity & is
supported by government & health policy
NHS Research Governance Framework (2005): patients should be “active
partners” in the research process
 http://www.nihr.ac.uk/policy-and-standards/research-governance-framework.htm
 https://www.gov.uk/government/publications/research-governance-framework-for-health-andsocial-care-second-edition
‘2.2.6 Relevant service users and carers or their representative groups
should be involved wherever possible in the design, conduct, analysis and
reporting of research. Social care research has a long tradition of involving
them. INVOLVE, formerly Consumers in NHS Research, has established the
principle that major advisory bodies in NHS R&D programmes should
normally have at least two consumer representatives.’
Patient & Public Involvement in Research
INVOLVE (http://www.invo.org.uk/)
 Unique national advisory group that promotes patient &
public involvement in research
 Expectation of PPI contribution that goes beyond “tokenism”
‒ i.e. To have a more meaningful &
identifiable role, e.g. in the design,
conduct, analysis and reporting of
research
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. http://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
Research Cycle
INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/
Extensive support & guidance:
http://www.invo.org.uk/
‘Going the Extra Mile’: a strategic review of public involvement in NIHR: March 2015
'Every day patients and the public
go the extra mile to help make UK
research happen. They help decide
research priorities, shape its design
and spread the word about its
importance to fellow citizens. The
public have already made a huge
difference to NHS research and the
work of the NIHR. We must match
their commitment with an equal
resolve to involve voices from all
parts of the community in all that
we do'.
Simon Denegri
National Director for Patients and
the Public in Research​ and Chair of
INVOLVE
Examples of ‘doing’ PPI
www.thinksafe.care
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.
Example 1: PPI Steering Panel
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
Example 2: Conducting Research
 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
 Piloted patient focussed materials & data collection measures
 Development & design of ThinkSAFE intervention materials
Example 3: Dissemination
 Local & national dissemination of study & developments
Interactive Session
Research
Task 1: Small group exercise #1
Your seedling research idea is awaiting “involvement nitrate”
Task #1 (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
Task 2: Small group exercise #2
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 ?
Place “Dave” on your diagram where you think
he has a role to play.
Write down what this role is at this place.
Feedback to full group (2-3mins)
Research Cycle
INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/
In your small groups discuss …
• What might involvement look like at the different
stages of the research cycle?
– What research activities might Dave contribute to?
– Who else might 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)
Got an idea for a session? contact helen.atkinson@ncl.ac.uk
Access to guidance & other resources
https://internal.ncl.ac.uk/medical/engagement/index.htm
Other resources
Thank you!