Transcript Slide 1

Patient and Public Involvement in
the new RDS for the East
Midlands:
Raksha Pandya and Kate Windridge
Wednesday 17th June 2009
A conceptual framework for involvement in
research
Influence
research design
Feedback
Information
Individual
Collective
My say in decisions
about care and
treatment
Our say in planning,
design and delivery of
research
Slide adapted from In Health Associates “The Engagement Cycle”
Croydan PCT 2009
PPI is…
“Active partnership - involving
members of the public in NHS,
public health, applied health
and social care research, not
simply as research
participants or ‘subjects’.”
“Doing research with or by
people who use services,
not to, about or for them.”
What is PPI in Research?
 User driven research where service users set the
research agenda and manage the process.
 Collaborative research where service users are part
of a team undertaking the research
 Consultative research where a research team might
consult service users to comment on the research.
 How does it work?
Interaction funnel
Consultation
User
controlled
Collaboration
Patient and public ‘interaction’
enters into the research process
Filtration can result to
Identifying the
topic
Acting on
Findings
Prioritising
Commission
ing
Evaluating
PPI
Designing
research
Disseminating
Analysing and
interpreting
Managing
research
Undertaking
research
Collecting
data
Why do it? Better Research
• access to privileged knowledge.
• embodies principles of citizenship
• helps research process practically
Citizenship
Privileged
knowledge
Practical
outcomes
Challenges
Clinicians and
academics
• giving control
• PP too close
• finding suitable PP
• lack of consensus
• colliding worlds
• Inexperienced
Patients and public
• tokenism
• intimidation
• lack of guidelines
• expectations not fulfilled
• clarity of roles
• language (differences and
jargon
Research process
• few studies funded to SU
organisations
• added costs
• added complexity, time, and
bureaucracy
• lack of funding for preprotocol work
• lack of relevant
training/mentoring provision
• clarity of roles
responsibilitiesusual
suspects
• involvement policy assumes
that people want to be
involved.
• motivations can be diverse
How to do PPI
There is no one, simple model of how to do PPI, but:
• Be clear about roles and responsibilities
• Allow time for positive working relationships to develop
• Make the environment accessible and as inclusive as
possible
• Avoid jargon
• Expectations are often the biggest problem but by making
these explicit, different perspectives can be constructive
• Ensure on-going involvement
• Pay for people’s time and expenses
• Acknowledge people where possible
• Offer training
PPI resources.
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Involve at www.invo.org.uk
Local Involvement Networks (LINks)
Patient interest/support groups (local & national)
We offer PPI training on demand
• currently 75+ people have attended PPI training in
Leicestershire and Northampton
• Contact me directly on any specialised PPI enquiry
[email protected]
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PPI Resources
• Pre protocol awards
– In the process of setting up a new structure
• Forthcoming RDS PAGER Forum LNR Pilot
• Forthcoming RDS PPI support structures
– Interested lay researchers (new database)
– Interested lay reviewers (new database)
– Disease specific communities (new database)
– PPI Training courses others can offer (on the website)
– Bespoke PPI training for special groups (to be offered)
– PPI promotional information (on the website)
– Quarterly PPI update meetings (in the new service)
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Travel expenses
Refreshments
Consultations
Commenting on drafts
Room hire
Childcare
Training/conferences
Site visits
Translation
Transcribing
Postage
Focus groups
Not funded
Funded
Pre protocol awards
• Planning service user input
meetings
• Administrative support
• Research itself
• Evaluation itself
Reviewing grant proposals
with PPI in mind
Challenges for RDS?
• No single, ‘right’ way to involve the public, patients, or other relevant
people in the research process.
• Many views among researchers of what PPI is & what is involved.
• Some discomfort among some researchers about PPI.
• Lack of research evidence concerning the effects of PPI on overall
research process, but strong moral, methodological and monetary
arguments for PPI.
Reviewing grant proposals
with PPI in mind
– RfPB applications (and increasingly others) require PPI
– Involvement can happen at any stage of the research process
– Involvement can happen in many ways
Scope for creativity? We can support research teams in planning
involvement at whatever stages, and in whatever ways, are the
most appropriate
Reviewing grant proposals
with PPI in mind
• A team contact the RDS, 4 weeks before the RfPB deadline. They propose
a complex, multistage study of parents’ understanding of a chronic illness
in childhood . A particular grouping of children with this illness have worse
outcomes than the national average. The team want to (a) find out why
this is, and then (b) design, (c) implement, and (d) test interventions that
improve outcomes. They want to involve patients/families and had
planned to run focus groups with parents to help design the study but
now do not have time. They say they cannot postpone submission and
would like RDS methodological help, because they do not know quite how
to achieve what they want. They have a clinician, a qualitative expert, and
a researcher on their team.
• They ask us to support them. What next? (What else do we ask,
what do we recommend – focussing on PPI)
Reviewing grant proposals
with PPI in mind
• *Plotting a proposal with PPI in mind: 4 steps
• PROBLEM
• DESIRE
• OPPONENT
• PLAN
*Thanks to Mary Dixon Woods’ ‘Plotting an academic paper’ presentation (blue
text)
A proposal should:
Be clear about the PROBLEM
• Show that there is some issue that really needs tackling
• Make it an interesting problem
– Show how it’s obstructing the achievement of important goals
– Link it to a policy or practice objective
– Show how it affects people’s lives
Implications for RDS, with PPI in mind
• (Does proposal actually achieve the above?)
• Explore how team became aware of the problem: did
patients/carers/other members of public bring it to their notice? Or
health care providers? Whose lives are being affected?
• If so, does the proposal say so? Are those people part of the
team? Will they continue to be involved? Exactly HOW?
A proposal should:
Be clear about a DESIRE to put the problem right
• Formulate the desire as a clear research question
– clearly stated, well defined
– oriented to solving the empirical (or theoretical) problem already
identified
Implications for RDS, with PPI in mind
• (Does proposal actually achieve the above?)
• Is there scope for patients/public to help find ways of solving the
problem?
• Is there scope for patients/public to be involved in honing the
research question?
A proposal should:
Be clear about the OPPONENT
• Say what is standing in the way of resolving the problem
– (other research has failed, there is a gap in the literature)
• Say why this team is the one that is uniquely placed to fill the gap
Implications for RDS, with PPI in mind
• (Does proposal actually achieve the above?)
• Has the gap arisen partly through lack of patient/public input which
the team can now rectify?
A proposal should:
Be clear about the PLAN
• Make sure it clearly addresses the problem
Implications for RDS, with PPI in mind
• (Does proposal actually achieve the above?)
• Is the plan detailed enough? Exactly how will patients/public be
involved? Resource implications?
• How far does plan go – does it include PPI in dissemination and
implementation?
• Does proposal say how patients/public were involved in
development of plan and identification of problem?
PPI and bids for funding
There will be a ‘lay’ reviewer for the application
Every member of the panel is ‘lay’ with respect to some parts of the
application
PPI might be appropriate at any/every stage of the research process:
needs to be clear, well thought-out, detailed, resourced.
(e.g. identification of problem, development of research plan,
sampling strategy, development of patient information, method
and timing of recruitment, clarity of questionnaires, analysis,
dissemination of findings, implementation of findings)
Levels of involvement?
Try the quiz on the NIHR website: http://www.nihrccf.org.uk/site/quiz/default.cfm
Reviewing grant proposals
with PPI in mind
Weaknesses in previous RfPB applications:
• Not enough detail about lay involvement.
• No public involvement in developing the proposal.
• Not budgeting adequately (or at all) for PPI.
• The quality of the lay summary.
Examples of good practice
• Involved patients in the early development of the proposal
• Had equal steering group representation for professionals and lay people
• Involved service users in designing questionnaires and topic guides, conducting
interviews and focus groups, reviewing transcripts and contributing to interpretation
and preparing patient information.
• Arranged for participants to be informed of research findings
• Involved patient groups and charities in disseminating the findings among patients
and service users.
RfPB Directors Message 4, Patient and Public Involvement, September 07