https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/nihr-gosh-brc-and-crf-joint-support-research-strategies/patient-and-public-involvement-engagement-ppie-hub/ways-to-get-involved-in-research/

Ways to get involved in research

As part of our joint GOSH BRC & CRF Patient and Public Involvement and Engagement (PPIE) Strategy we aim to grow our PPIE community and increase opportunities so that PPIE is embedded within the organisation and informs all stages and aspects of research design, delivery and strategy.

There are many ways to get involved in research. Some are one off opportunities and others offer more long-term involvement activities. We understand that we need to be flexible and understand that sometimes people’s circumstances change. We aim to work with our PPIE contributors to make sure that the PPIE opportunities on offer are suitable to their needs and interests. We also aim to match Patient and Public Involvement (PPI) contributors to involvement activities that match their skills.

Different ways to get involved in research

PPI in looking at research questions and planning the research

Talk to a researcher informally and give your views at a:

  • workshop, focus group or event
  • before or after a hospital appointment
  • take a survey or questionnaire

PPI in designing research

Attend a workshop or focus group or online involvement to:

  • review a research proposal including the plain English summary
  • comment on how practical and reasonable the research is
  • comment on and/or co-develop patient information leaflets, questionnaires or other research materials to make them more understandable to patients and the public

PPI in managing research

Join a PPI research steering group or committee and work in partnership with researchers to:

  • shape the research methods.
  • steer the study/project/trial through the research process

PPI in undertaking the research

As a member of a PPI research steering group or committee to work in partnership with researchers to:

  • analyse and interpret research findings

Attend a small workshop or event to:

  • give your views on research findings

PPI in sharing research results or findings.

As a member of a PPI research steering group or committee, work in partnership with researchers to:

  • co-develop dissemination of research findings plan:
    • how best to report research findings to others through networks, newsletters and different media and formats
  • co-develop progress reports or e-newsletters to keep PPI representatives and research participants informed throughout the project
  • co-present at conferences, speaking to patients, support groups and service providers.
  • co-author journal and newsletter articles
  • co-deliver ‘hands-on’ activities at research engagement events

About PPI Focus Groups

  • used to explore beliefs, perceptions and attitudes about a certain topic
  • discussion starts out broadly and gradually narrows down to the focus
  • not a rigidly constructed question-and-answer session
  • usually between 15- 2 hours in duration
  • typically consist of between 6-8 people with a facilitator and co-facilitator
  • the facilitators focus the discussion in a nondirective manner
  • focus groups often offer unexpected insights

About PPI Steering Committees

From being involved in a PPI Focus Group people may also be interested in being involved throughout the lifecycle of the project as part of a PPI Steering Committee to:

  • help to guide/steer a piece of research/project through each stage of the study:
  • design (designing the detailed protocol):
  • recruitment (how to enhance a research participant’s journey in a research study/trial)
  • co-production of easy-to-understand patient information
  • analysis
  • influencing the way research findings are put into practice

The impact of involvement for our PPIE community

Researchers are asked to think about the impact of involvement for PPI contributors and to find out how they feel they have developed skills throughout the life cycle of the research project. We also ask researchers to reflect on and plan how they will involve people earlier in their next project.

Please contact the GOSH PPIE Manager if you would like to find out more about getting involved in research at GOSH: research.ppi@gosh.nhs.uk