Patient and public involvement: a report on the experiences of Cochrane Vascular

ID: 

329

Session: 

Poster session 3

Date: 

Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Stewart M1, Robertson L1
1 Cochrane Vascular, UK
Presenting author and contact person

Presenting author:

Marlene Stewart

Contact person:

Marlene Stewart
Abstract text
Background:
As part of a National Institute for Health Research (NIHR) programme grant Cochrane Vascular worked with a patient and public involvement (PPI) group based at the Northern Vascular Centre at the Freeman Hospital in Newcastle upon Tyne, UK.

Objectives:
To involve patients with vascular conditions in the assessment of Cochrane plain language summaries.

Methods:
Following a brief introduction, the Cochrane Vascular systematic reviewer discussed the rationale of systematic reviews before outlining the process and methods for conducting them, and the role of Cochrane. The participants were then asked if they would be willing to read and comment on draft plain language summaries written by Cochrane Vascular review authors. We were particularly interested in the opinions of the participants about the language and style of writing used in the plain language summaries. The plain language summaries were circulated before the PPI meetings so that the participants could read them at their leisure and have time to prepare their comments. The plain language summaries and comments were then discussed during the PPI meetings. The items raised were summarised and recorded by the systematic reviewer.

Results:
In total, 18 plain language summaries were assessed. There were two main themes of feedback: the summaries contained too many long sentences, and some of the terms used were too complex. The participants felt that the summaries would be easier to read if smaller sections with relevant headings were used. The participants also provided alternative lay terms for the identified complex terms.

In addition to the main themes, review-specific comments were noted and some participants reported that they did not see the need for information about the quality of evidence.

The comments on the 18 plain language summaries were passed on to the review authors, who addressed and incorporated the comments into their reviews. The Cochrane Vascular editorial base now uses this feedback when providing comments on newly submitted reviews.

Conclusions:
Feedback on plain language summaries by the participants of the PPI group has proved invaluable for making Cochrane Reviews more accessible.

Patient or healthcare consumer involvement:
The Cochrane Vascular editorial base thanks the participants of the PPI group for their time and dedication to this project. Their comments have been invaluable.

Relevance to patients and consumers: 

This is a report which describes the input from a patient and public involvement group that commented on draft plain language summaries for the Cochrane Vascular review group. It demonstrates the positive impact from the patient and public involvement group on how plain language summaries are written. The Cochrane Vascular review group now uses the recommendations from the patient and public involvement group to improve future plain language summaries.