PPI 2015 Unit II

If involvement is not done well, it can be damaging, particularly to the patients involved. There is a danger that involvement which is not inherently valued and has not been adequately thought through will be tokenistic. This means it cannot add value to the research, as patients’ voices will not be heard and their views not acted on. So how can patient and public involvement be made meaningful? Here are some ideas; you might have more to add:

• Good communication helps to overcome most barriers
• The best way is to involve people before a grant application goes in, so they have a chance to influence the research from the start. If a researcher can demonstrate active involvement of patients and the public in the design of a study, it is much more impressive to grant funders than promises of what might be done further down the line.
• Adequate costs for patient involvement and public engagement should be allocated in the project budget.
• The purpose and process of involving patients/the public should be thought through, discussed with the team and documented in lay language so everyone is clear about roles and expectations. If there are sceptical team members, it is important to ensure that they respect the patient/public members of the team.
• Using virtual methods, such as email and Skype, can supplement face-to-face meetings, enabling more inclusive working practice
• Training for researchers and patients can be arranged. Mentoring and support for patients/members of the public who get involved is essential and it is advisable to make this someone’s particular responsibility within the team.
• One team member should act as facilitator and mentor, briefing the patient/public team members before meetings, debriefing after meetings and regularly checking their well-being to help them to manage their role.
• Evaluate the process from the perspectives of the patient/s and researchers to identify what works well, what might be done better and the impact of the involvement – and publish the evaluation.

As for letting members of the public know that opportunities to get involved in research exist, that is mainly a question of public engagement, which we will discuss later in the course.