patient & public involvement in research support for researchers working with public &...
DESCRIPTION
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 - PowerPoint PPT PresentationTRANSCRIPT
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
Tokenism
Is OUT!
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 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.
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.
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
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
ResearchInvolvem
ent
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
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
Research Cycle
INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/
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
Thank you!
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
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