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Table 3 The 10 top tips for working with patients and the public in doctoral studies

From: Patient and public involvement in designing and conducting doctoral research: the whys and the hows

1. Use the internet and link with other institutional resources to identify your PPI members e.g. search for existing PPI panels, support groups, expert patients, established hospital groups, online panels, and University panels.
2. Before commencing any PPI activity, have a clear understanding of your aim for PPI. It is useful to create Terms of Reference for groups you establish and refer back to them regularly.
3. Follow INVOLVE guidelines for reimbursement and travel expenses and consider how payments may impact on your members’ benefits and tax, if applicable. If you do not have funding available, search for grant opportunities to enable you to conduct PPI work (e.g. Research & Design Service in UK).
4. Offer refreshments or catering at your meetings. We have found that an informal social lunch helps members bond and feel valued.
5. Carefully plan your sessions to maximise your time together. Sending agendas and background information before your session will help ensure everyone remains focused on the topic.
6. Consider carrying out a training needs analysis with your PPI group to identify if they require any training before undertaking research tasks.
7. Ask your members how they prefer to receive information from you and in what format; email or post, size of text, colour and so on.
8. Provide regular feedback on how you have used PPI comments so people are able to recognise their contribution to your work. To achieve this, make regular notes during and after the meeting with PPI to capture their input.
9. Do not underestimate the time you will need to plan and carry out PPI activities.
10. Be creative during your meetings. Suggest documenting ideas on sticky notes or flip chart paper and use a variety of activities to help all group members to contribute.