https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/patient-and-public-inv/patient-and-public-involvement-engagement-ppie-hub/top-tips-for-getting-involved-in-research/
Top tips for getting involved in research
As we grow our Patient and Public Involvement and Engagement (PPIE) community, we want to ensure that all PPIE representatives are supported to carry out their PPIE activities. We have adopted the NIHR’s UK Standards for Public Involvement in Research set of values and principles to guide our PPIE in research. The Standards are a description of what good patient and public involvement looks like.
The standards cover six important ‘values based’ areas:
- Inclusive Opportunities: patient and public involvement partnerships are accessible and include a range of people and groups, as informed by community and research needs.
- Working Together: work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships.
- Support and Learning: offer and promote support and learning opportunities that build confidence and skills for patient and public involvement in research.
- Communications: use plain language for well-timed and relevant communications, as part of involvement plans and activities.
- Impact: seek improvement by identifying and sharing the difference that public involvement makes to research
- Governance: involve patients and the public in research management, regulation, leadership and decision making.
Consider the following when getting involved in research:
- join online meetings from a quiet venue and if this is not possible then consider having camera and microphone off and use chat function
- abide by meeting and focus group ground rules for how you will attend meeting, so everybody has an equal opportunity to contribute and agree to mutual respect and respecting differences of opinion
- if joining a PPI steering committee contribute to and abide by the terms of reference and/or ground rules for the meeting
- if reviewing funding applications or other research materials please treat them as confidential.
Communicate with researchers to let them know if:
- you have any support needs to attend meetings or groups so they can make adjustments or provide support
- you are not able to attend a meeting or focus group or can no longer commit time to the Patient and Public Involvement (PPI) activity
- they are using jargon, hard to understand terms or scientific language.