Background: Active involvement of key stakeholders, including people with a lived experience of a healthcare condition, in conducting systematic reviews is now routinely recommended, to ensure that reviews are both accessible and clinically relevant. However, there is little guidance available about how best to actively involve stakeholders within systematic reviews, or the impact of this involvement.
Objectives: To explore the different ways in which stakeholders (e.g. people with lived experience, health professionals, policy makers) have contributed to systematic reviews and the perceived impact of this collaboration.
Methods: Qualitative interview study. Participants were authors, editors or stakeholders who had direct experience of active involvement in systematic reviews. Potential participants were contacted by email and invited to take part in a Skype or telephone interview. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to generate codes and themes, using NVivo software.
Results: Twelve people (9 review authors, 2 people with lived health experience of a healthcare condition, and 1 Managing Editor of a Cochrane Review Group) were interviewed. The level and degree of involvement described varied widely, but there were examples of stakeholder input contributing to every stage of a systematic review. Three key themes, and several sub-themes, emerged. Key themes were: 1) practical (organisational) aspects to involving stakeholders; 2) stakeholder impact on the evidence synthesis; and, 3) personal impact on the researchers themselves. Central to the success of positive stakeholder engagement was the degree of mutual respect, underpinned by the sense that all contributions were of equal merit and valued.
Conclusions: There was a general consensus that stakeholder involvement enhanced the meaningfulness of a review and directly impact on their accessibility and usefulness. A shift from the traditional researcher-led 'ownership' model of conducting systematic reviews to a new model of collaboration and partnership is considered essential for successful involvement.