Minimum Standards Framework

1. Levels of engagement

✅ Guidance for considering the most appropriate timing, mechanisms, and strategies to be inclusive of Lived Experience.

• Lived Experience experts should be engaged at the earliest opportunity, to establish:
• What level of engagement is appropriate for the research, including timing, methods of communication, level of transparency during the project. Researchers should be able to justify this accordingly.
• Although flexibility is important, clarity around expectation and commitment is paramount to all parties. This includes transparency about key steps, milestones, roles, and responsibilities throughout the engagement.
• It is important for the research lead to demonstrate how Diversity, Equity and Inclusion principles will be incorporated.

2. Remuneration

✅ How, and how much should Lived Experience Experts be paid?

• Participants should be remunerated at the appropriate rate; full costings for expected level of involvement, travel expenses etc should be factored into an initial budget.
• Different LE experts have different desires and needs, therefore, in accordance with NIHR guidance, flexibility is important in method in remuneration both pre- and during the research project.
• There is currently considerable variance in amounts paid (e.g. NIHR / Gambling Commission). As a minimum, LE experts should be remunerated in accordance with guidance available from the NIHR. The NIHR also provide a wealth of guidance on how to factor in the employment, tax, and benefit status of the LE expert.

3. Support and Training

• The LE expert(s) on any project will have evolving needs as the project progresses. The project PI should work with LE experts at the earliest opportunity to identify training and support needs that benefit both the individual and the project.
• Any additional training needs can potentially be funded through the Lived Experience Access Fund (LEAF). (link to LEAF page on LERH website to be inserted).
• Researchers are encouraged to explore and utilise the existing skills and aptitudes of LE participants in projects where appropriate.

4. Safeguarding and ongoing support

✅ The needs of the LE expert should be discussed at the earliest opportunity, and remain flexible throughout the research and beyond.

• Previous work with LE experts has frequently identified that the level of attention paid to the emotional and mental well-being of LE experts is lacking.
• A support plan should be discussed with all LE experts at the start of the role, particularly if the research is in a sensitive area. This can include a personal wellbeing plan, agreed supervisions, and regular check-ins post meetings / research activities.
• Consideration should be given to who provides this support. A flexible approach is required to support outside the research team, to include continuation or supplementation of existing support – via peer support or any other method. Support should be considered and justified in project budgeting.
• It is important also that the support does not stop, when the research stops. A schedule for post-project check-in should be agreed, to ensure that any required care or support can be provided to a sufficient level.

5. Dissemination and credit

• The role of the LE expert(s) in dissemination of the research findings should be discussed and agreed at the earliest opportunity.
• Flexibility to adjust the agreement should also be considered.
• If further training is required to empower the LE expert(s) to be part of the project dissemination, then this should be provide in accordance with point IV.

6. Evaluation

• Evaluation of the LE engagement should be carried out at pre-specified points during and after the project, to understand better what is working, and what is not in accordance with the scope of the project.
• At the end of a project as recommended by the NIHR guidance, researchers should consider formal evaluation tool when reporting the impact of the PPI.

7. Language

• Language and terms evolve over time. Terms and language that is stigmatising and triggering changes, and can be individual and unique to persons or groups of people. Researchers are encouraged to work directly with LE experts about the language and terms used during the engagement, and to use person-first language.
  
• Disclaimers about language should be included to define meaning in the research project and acknowledge the evolutionary and personal nature of language.
• Researchers should work with LE experts to avoid using stigmatising and potentially triggering language in all study materials.
• Researchers should make an effort to capture nuance in language for LE experts who are non-native English speakers.