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Table 10 Consultation exercise sessions 2 and 3—key principles and writing processes

From: Recommended characteristics and processes for writing lay summaries of healthcare evidence: a co-created scoping review and consultation exercise

Steps

Key principles from consultation exercise participants’ perspectives

1. Preparing

PPP should be involved in every step of the process including preparation and preferably engaged in a leadership or co-leadership role from the onset of the development of the *LS

Ideally, a team should have at least two **PPP and work to create a safe, comfortable partnership for all team members

PPPs should be engaged in a discussion about the kinds of LS writing skills they would like to contribute and acquire

It is useful to consider the following two groups: the writing team and the target audience. The first task is to compose the writing team that includes PPPs, then as a team, determine the primary audience the team is writing for

Researchers working with the PPP on the LS need to consider, and plan for, how they will support PPP members to develop the LS writing skills they are interested in acquiring

Determine the purpose of the LS and the audience for the LS at the same time—these two considerations go together

2. Writing

The writing team should continue to follow through on their plan outlined during in step 1 while being open to any accommodations that may need to be made

Confirm a format for the LS. Having a sample template is very helpful for PPPs to draft LSs

Offer the PPPs a chance to write the LS

Guiding questions can be helpful for writing such as “What did you do, what did you find, why does this matter?”

Ask PPPs to review the study and ask them “What do you think is the most important information to communicate?”

3. Reviewing

Every PPP on the team should be given the opportunity to review the drafts of the LS

Read the LS aloud

Conduct user testing by showing the LS to 3–5 people who are representative of the main audience, but are not members of the LS team, and request detailed feedback from them. This feedback is essential as the writing team may be too close to the material to evaluate its readability and comprehensiveness

Focus groups are not necessarily needed for reviewing

4. Finalizing

This is an important step, and it is different than reviewing

Conduct a final review to ensure there is no misrepresentation of the study

Finalization may require additional rounds of user testing (e.g., to ensure proper translations)

A production team can be useful for design and incorporating images and captions, but should prioritize accessibility (e.g., screen reader friendly, all visuals have alt text)

5. Disseminating

Consider what format(s), for example hard-copy, digital or audio, the final LS will be disseminated in. Intended audience(s) might dictate dissemination

Need a specific dissemination team to facilitate planning and ensure accessibility (e.g., creating a social media campaign)

6. Evaluating

This step should be taken once the LS has been disseminated

Evaluate the LS: Did it ‘work’ as it was originally intended? Consider whether any metrics may be collected to support the LS’ evaluation (e.g., numbers of downloads, accesses on a website, etc.)?

Evaluate the process used by the writing team to create the LS: Did the writing process work well? Could it be improved for next time? What did the writing team members take away from their experiences working together on the LS? Would they be open to working together again? Consider having PPP and researchers who have experience collaborating on the development of a LS be future mentors for a next group who will work on a similar task

  1. *LS Lay summary
  2. **PPP Patient and public partner