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Patient and public involvement and engagement (PPIE)

  • collaboration with diabetes group
  • prioritised information governance

PPIE in LENS: 

Around 17,000 invitations to join LENS were distributed among potentially eligible participants, asking if they were interested in joining the trial. Contacting prospective participants without consent can raise concerns about data privacy, and people may feel uncomfortable that identifiable information has been used to contact them. LENS received no negative feedback from individuals who were invited to participate.

Listen to PPIE groups 

  • The LENS team met with members of a diabetes group to discuss trial plans and how participating would be experienced by participants. The meeting also discussed data protection and privacy implications of using health systems data in a clinical trial. The team observed that the group was enthusiastic about the trial, which they attributed to the area of research being of high importance to the affected communities.

  • Building trust within the targeted research groups is important. If trial teams take the time to build trust and help participants understand why data are collected and what will be done with collected data participants are more likely to feel at ease. Recruitment invitations were branded with the name of the local health board of participants, which may help foster trust. 

    We talked through how the trial would work. We also talked through how we might invite people and we talked about governance essentially or data protection and getting access to people's data and potentially their [retinal screening] images. I wouldn't say there was a problem in that audience understanding what we proposed to do. I thought they readily understood it and they were very enthusiastic. In fact, they were coming up with extra ideas that they wanted us to add in to the study. But I think part of the reason the trial worked was also that people's concern about their eyes is substantial
     - LENS interviewee
    In many ways, the PPIE was pleasurable. We had two patient representatives, who were on our steering committee throughout the study and contributed to newsletters and a variety of other things, and we had also a member from the Royal National Institute for Blind People in Scotland, who was a formal member of the steering committee, attended all the meetings, and was able to help with transmitting the results at the end of the study
     - LENS interviewee