Support for Researchers Working with Public amp Patient Groups Dr Susan Hrisos Senior Research Associate IHS Dr Lynne Corner FMS Director of Engagement May 2016 Format of session Rationale for Patient amp Public Involvement in Research ID: 563639
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Slide1
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 EngagementMay 2016Slide2
Format of sessionRationale for Patient & Public Involvement in ResearchNational context &
the NIHR Breaking Boundaries review Examples of ‘doing’ PPI Interactive sessionSmall group workSlide3
First – a little bit about you …Who you areWhat you are up to
What you hope to get out of today Slide4
Patient & Public Involvement (PPI)
Huge increase in the involvement of patients in improving their health & healthcare in recent decadesExamples: shared decision making; self-management of chronic illness; development of healthcare policy, clinical guidelines & patient literatureEvidence 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) Slide5
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 processResearch can seem irrelevant to patient & public needs Dissemination of findings to take too longSlide6
Patient & Public Involvement in Research
PPI in research has become an important part of research activity & is supported by government & health policyNHS 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-and-social-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.’Slide7
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
Tokenism
Is OUT!Slide8
INVOLVE
Unique national advisory group that promotes consumer involvement in researchSupported 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 willbe more relevant to people & more likely to be usedr
eflect the needs & views of the publicbe more likely to produce results that can be used to improve practice and social care
Promotes involvement in all aspects of the research process, includingDesign of questionnaires & topic guidesPreparing patient information
Conducting interviews & focus groups
Analysing transcriptsSlide9
Research Cycle
INVOLVE
http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/Slide10
http
://www.invo.org.uk/
Extensive support & guidance:Slide11
'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
‘Going
the Extra
Mile’:
a strategic review of public involvement in
NIHR:
March 2015Slide12Slide13
Examples of ‘doing’ PPI
www.thinksafe.careSlide14
NIHR Patient Safety Programme: “Improving patient safety through the involvement of patients” (Programme Lead: Prof. John Wright. Academic Lead: Prof Ian Watt)
Project 1: BradfordPatient measure of organisational safety
Lead:
Prof. Rebecca Lawton
Project 2: Bradford
Patient
error reporting
system
Lead:
Prof.
Gerry
Armitage
Project
4:
Newcastle
Direct patient intervention to reduce their risk of harm
Lead:
Prof.
Richard Thomson
Project
3:
Leeds
Patient-centred training programme
Lead:
Prof Vikram
Jha
Core focus:
D
evelopment of user-informed approaches
to improving patient safety
. Slide15
Example 1: PPI Steering Panel
Annual Steering Seminar2010 Programme research Day
Research stream within PS Conference
2013 Scrutiny committee
Patient Panel meeting
6
monthly
3monthly informal meetings
Website & email fora
Newsletter
Scientific Steering YQSR group meeting
3 monthly
Progress meeting
3
monthly
Project 4 team meeting
2 monthly
Project 1 team meeting
2
monthly
PPI ‘pre-team meeting’ meeting
Ad Hoc interim PPI meetings
‘Business ‘emails
‘Maintenance’ emails
Dissemination activities
Panel Chairs
Project 4 team meeting
2 monthly
Project 4 team meeting
2 monthlySlide16
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 Slide17
Example
3
: Dissemination
Local
& national dissemination of study &
developments
Slide18Slide19Slide20Slide21
Interactive Session
Research
InvolvementSlide22
Y
our seedling research idea is awaiting “
i
nvolvement nitrate”
Task #1 (10
mins
):
As a group …
D
iscuss 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 1:
Small group
exercise #1Slide23
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
)
Task 2:
Small group exercise #2Slide24
Research Cycle
INVOLVE
http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/Slide25
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)
In your small groups discuss …Slide26
Got an idea for a session? contact
helen.atkinson@ncl.ac.ukSlide27
Access to guidance & other resources
https://internal.ncl.ac.uk/medical/engagement/index.htmSlide28Slide29
Other resourcesSlide30
Thank you!