PPI

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					 Research Design Service London
 Enabling Better Research



  Implementing Patient and Public
  Involvement in Research
  RDS Summer Workshop
  20th July 2010




                                                  www.rdslondon.co.uk
                                                  www.rdslondon.co.uk
www.rdslondon.co.uk      A partnership between:
Overview
•Introductions
•The ‘basics’
•The Research Cycle – Practical
•Feedback
•Key Principles
•RDS London – what it can do to help




                                       www.rdslondon.co.uk
What is user/patient public
involvement in research?

•Actively working in partnership with patients, carers and members of the
public to plan, manage, design and carry out research.

    •“rather than the use of people as the ‘subjects’ of research. …(user
    involvement means) doing research ‘with’ or ‘by’ the public…” INVOLVE

•It is the creation of a partnership between users and researchers to try to
make the research methods and outcomes more appropriate to patients’
needs.




                                                              www.rdslondon.co.uk
What user/patient public
involvement in research is not

•User involvement is not about researchers using people as
subjects of research

•It is not about users filling in questionnaires or being interviewed

•It is not about patients giving samples

•It is not about recruitment of people to a clinical trial




                                                      www.rdslondon.co.uk
RfPB Director’s Message - 4
Good examples of PPI were collaborative and had some of these characteristics:

• 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.



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NIHR – 5 Key stages of
Involvement


•Design of the research
•Development of the grant application (pre-
protocol work)
•Undertaking/Management of the Research
•Analysis of Data
•Dissemination of research findings



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                      IDENTIFYING &
                       PRIORITISING




     MONITORING &                      DESIGNING
      EVALUATION




IMPLEMENTATION
                     research             DEVELOPMENT
                                          OF PROPOSAL


                       cycle
                                      UNDERTAKING
     DISSEMINATION                     & MANAGING



                       ANALYSING &
                      INTERPRETING



                                                        INVOLVE
                                                        November 2004
Practical

We have split you into 5 groups; we want you to discuss
•How user involvement could take place in your stage
•Who do you need to involve?
•How will they be involved? (Activities/Tasks/Roles)
•Think about your usual processes of conducting research and
how people/patients could be involved.




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www.rdslondon.co.uk
DESIGNING




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DESIGNING
•Patients and Public (co)designing the research
•Getting together to discuss proposals
•Commenting on the design
•Reshaping and clarify research question
•Challenge assumptions in the design
•Ensuring methods adopted are appropriate for patients
•Ethics applications
•Data collection methods
•Patient information sheets and consent forms




                                              www.rdslondon.co.uk
Grant Writing




                www.rdslondon.co.uk
Grant Writing
•Language
•Ethical Issues
•Inform areas where patients and the public could be involved
•Assist in writing patient involvement section
•Lay Summary
•Protocol
•Clarify Research question
•Outcome measures
•Ensuring costs of involvement have been included in the
proposal




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Undertaking/Managing
Undertaking/Managing
•   Steering Group/Lay Reference Group
•   Project Management
•   Patient information
•   Consent forms
•   Produce research updates
•   Data Collection
Analysing/Interpreting
Analysing/Interpreting
• Undertake analysis (developing themes in
  qualitative analysis)
• Consulted to see if they understand and
  interpret data in the same way as research
  team.
Dissemination
Dissemination
• Creating lay reports
• Getting the information to a wider audience:
  Who is interested and how to reach them.
• Could help distribute results within their
  informal networks
• Producing summaries of findings
    Key Principles

•   Specification (Role description, expectations etc)
•   Budget (Travel, care, events, food etc)
•   Time (Recruitment, planning ahead)
•   Support (Training, key contact)
•   Feedback (Them to you, you to them)
•   Acknowledgement (Thanks & recognition)
How can RDS London help you with
user involvement?




                           www.rdslondon.co.uk
How can RDS London help?
•Early user involvement will strengthen the likely impact of your
research

•So start your user involvement early

•RDS can give advice on groups and how best involvement could
be incorporated

•RDS London has set up Enabling Involvement Fund (EIF)




                                                 www.rdslondon.co.uk
Enabling Involvement Fund
•Set up to help researchers get users involved in the early phases of research,
particularly when they have a lack of involvement

•Will pay for an initial meeting between researchers and service users

•Meetings will be facilitated by RDS

• Up to £350 available to pay for this
         Meeting room hire
         Refreshments
         Expenses
         Payment for carers/childcare

•Have to apply to RDS, decision within 4 weeks




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      Don’t forget RDS London are here to help!




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