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Patient and Public Involvement. What is Involvement?. Research that is done with or by patients and not to, about or for them. Working together with patients to develop a good research proposal

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Presentation Transcript
what is involvement
What is Involvement?
  • Research that is done with or by patients and not to, about or for them.
  • Working together with patients to develop a good research proposal
  • Commenting on the methods or processes of the research, being actively involved in the research process.
examples of involvement
Examples of Involvement

Known as Patient and Public

Involvement (PPI)

  • Being part of the research team
  • Helping design the research
  • Being a member of project reference group
  • Writing lay summaries and patient information sheets
  • Carrying out questionnaires with the participants
  • More power in the decision making process of the research
what is involvement not
What is Involvement not?
  • It’s not Participation: producing results that answer the research question, being the ‘guinea pig’!
  • Its not listening to patients to design your service better
  • Its not being part of a focus group to get feedback about a web based intervention
so why involvement
So why Involvement?
  • Stops us making mistakes that are obvious to patients.
  • Helps to guide our finances
  • Greater transparency, making research with patients, for patients that is more relevant to patients.
  • Obligation to the tax payer
  • Meets requirements of the NHS Constitution.
  • Meets requirements of funders
can you spot involvement
Can you spot Involvement?

The following are all extracts National Institute Of Health Research grant proposals

Which are Involvement and which are not?

"We plan a steering group for the project with four patient representatives as equal members of the research team."
  • Involvement
  • Participation
  • None of these
  • Unsure
"Individual service users who have been referred ... via this and other routes will be interviewed regarding their experiences."
  • Involvement
  • Participation
  • None of these
  • Unsure
"Our patients agreed with us that the study would deliver important information and that the research was timely and important."
  • Involvement
  • Participation
  • None of these
  • Unsure
what can the rds offer
What can the RDS Offer?
  • We provide a lay review service as part of our pre-submission review panel and as a separate activity.
  • We can advertise your project through our PPI network and help to identify patients to work with in your proposal.
what can the rds offer1
What can the RDS Offer?
  • We can provide financial support to patients or members of the public working on projects supported by the RDS up until the point of submission.
  • We can provide PPI advice from our staff on the PPI team.
what can the rds do
What can the RDS do
  • Give guidance on payment structures.
  • Provide assistance in writing lay summaries usually by getting lay members to write them either with you or for you.
  • We have useful guidance helping you consider what involvement to use to get the best out of involvement in your project.
how can we work together
How can we work together?
  • Maybe you are part of, or know of, a group that wants to get involved in research, if so register yourself using the Information and Registration Form on the website.
  • Researchers can advertise their projects through our systems.
  • If you would like to get involved as a patient or members of public, if so register using the same form.