Overview of PPIE standards & guidelines

UK Standards	EULAR recommendation	Versus Arthritis	Description	Resources
Inclusive opportunities	Involved in all types of research	Flexibility & understanding	People impacted by the research are involved in all types of research. This is accessible and includes a range of people and groups. Explore barriers and work together to remove them. There is choice and flexibility for how people get involved, for example location. Involvement is fair and transparent, including selection processes if needed. Remember people often have other commitments, but also their health and ability to engage may fluctuate.	Diversity and Inclusion of PPIE groups
	Support environment & facilitate contribution	Consider diversity & inclusion
Working together	Clear agreed description of roles & responsibilities	Planning is required	Working together from the start - a jointly defined purpose of the involvement is recorded, including a shared understanding of roles and responsibilities. Practical arrangements are agreed, and involvement plans are developed together. This should support recruitment of a minimum of two people. Resource required to involve people, and the approach for meaningful input agreed.	Involvement in research planning template
	Minimum of two people	From the beginning
Support and learning	Researcher training & support	Support, learning & recognition provided	Support provided to address identified needs. Reimbursement of time and expenses. General & tailored learning and development for involved people & researchers, which is proportionate, to ensure effective collaboration. Culture of learning across the project. Acknowledgements & co-authorship explored. People have many skills which could help your project in a variety of ways, beyond where you anticipate.	PPIE learning for researchers
	Training for involved people
	Recognition
Governance	Designated coordinator	Shared decision making power	Involvement in all parts of the project, ensuring people's voices are heard, valued and respected in decision making. Regularly review involvement plans. There should be someone who is visible and is accountable for involvement - a point of contact. Personal data collected, used and stored in suitable way.	Involvement across the research cycle
	From inception and throughout
Communications		Clear communication	Clear communication plans, including one for involved people. Share information about the project and progress - the more understandable it is the better input you will get from your interactions. Communications are accessible & flexible. There should be a process to gather and share feedback. Try to share your involvement learning and practice.	Communicating in lay language
Impact	Evaluation & adjustment		Capture the changes, benefits and learning from involving people. You should involve them in what impact assessments should focus on, and in helping to capture this. Give people feedback on impact of their contributions. Continuous reflection and adjustment is needed - this is a learning process.