Involving the public in shaping communications for research outputs on self testing kits

Patient and Public Involvement and Engagement (PPIE) case study

Aim

We aimed to involve the public in the development of communications about research into the lack of regulations in place for health self-testing kits (shop bought). Ensure that messaging about this is easy to understand, will not be misinterpreted or cause unnecessary worry to users of self-testing kits plus giving advice on what to do if they were concerned.

Methods

We involved 6 public contributors via online meetings.

Involvement included

• Public contributors were sent a draft press release 1 week ahead of the meeting to read after signing a confidentiality agreement.
• They then attended a 2 hour online meeting with the research team, facilitated by a Senior PPIE Manager, where several questions were posed to the group to explore how the press release made them feel about self testing kits, where they were concerned or anything they didn’t understand.
• Feedback was captured which then helped to shape the final press release.

Best practice

• Public contributors advised in advance they would be offered payment (NIHR guide rates) for meeting attendance and pre reading time.
• Meeting booked well in advance and pre reading was sent one week ahead of the meeting.
• Online meeting followed up by email to explain next steps and arrange payment promptly.
• Impact was captured using the PIRIT tool.
• Final press release shared with the public contributors with thanks for supporting. Public contributors noted they had really enjoyed the session.

Impact of PPIE

• Public contributors raised issues that had not previously been considered such as whether all self testing kits were under question (over the counter and online) which led to stronger messaging to clarify the research focused on shop bought tests only.
• They requested that more information was provided about the testing kits included in the project which was added.
• They noted that further advice was needed on what to do if public members had used a test, particularly if the result was negative, and this was added.
• They noted that public members might question the reliability of ALL tests so needed to emphasise those that are reliable such as pregnancy tests.

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