Patient & Public Involvement in research Support for Researchers Working with Public & Patient...
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Patient & Public Involvement in research Support for Researchers Working with Public & Patient Groups
Susan Hrisos, Senior Research Associate & Dave Green, PPI representative
May 2014
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Format of session• Introduction to Patient & Public
Involvement in Research
• Experience of ‘doing’ PPI – Researcher – PPI representative
• Interactive session– Small group work
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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)
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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
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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
Tokenism
Is OUT!
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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
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Learning from experience
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From novice to expert in 3.5 years. PPI, research and learning curves
Reflections from the “Improving Patient Safety Project”
Susan Hrisos Senior Research Associate
Dave Green 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.
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NIHR Patient Safety Programme: “Improving patient safety through the involvement of patients”
(Programme Lead: Prof. John Wright. Academic Lead: Prof Ian Watt)
Project 1: Bradford Patient 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: Development of user-
informed approaches to improving patient safety.
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Programme PPI: Steering Structure
Annual Steering Seminar2010 Programme research Day
2012 Research stream within PS Conference2013 Scrutiny committee
Patient Panel meeting6 monthly
3monthly informal meetingsWebsite & email fora
Newsletter
Scientific Steering YQSR group meeting
3 monthly
Progress meeting3 monthly
Project 4 team meeting
2 monthly
Project 1 team meeting2 monthly
PPI ‘pre-team meeting’ meetingAd Hoc interim PPI meetings
‘Business ‘emails‘Maintenance’ emails
Dissemination activities
Panel Chairs
Project 4 team meeting
2 monthly
Project 4 team meeting
2 monthly
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Newcastle Project: Co-design
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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
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Interactive Session
ResearchInvolvem
ent
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Small group exerciseYour 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
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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
Small group exercise #1
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Research Cycle
INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/
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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)
Task 2
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Thank you!
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Some challenges …
Patient PanelGroup dynamics & cohesion - variation in commitment Communication between members between meetingsExpectations & clarity of PPI role PPI understanding of research process & methods
ResearchersInter-personal dynamics – managing relationshipsCommunication between meetingsBalancing PPI preferences for level or type of involvement Managing expectations & having clarity of PPI role Concerns about undermining research quality & rigourAdditional work load/demands on time
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Some solutions …Clarity of roles, expectations:
Terms of reference for PP & researchersPPI Mentor
PP Training:Research processResearch methodologies
Facilitating communication:PP newsletter; PP website forum, PP email forumInformal ‘coffee morning’ meetings Increased contacts with researchers
Accepting that we might not always get it right