Background: traditionally, consumers are involved in Cochrane Reviews mainly at the referee stage before publication and in the production of Plain language summaries. This late-stage involvement, while important, may lead to production of Reviews that have limited interest for consumers and may not be as impactful in guideline development or uptake into practice.
Objectives: one of the main goals of the US Satellite of the Cochrane Pregnancy and Childbirth Group is to involve consumers and other stakeholders earlier in the process of Cochrane Reviews, in an effort to optimize the utility of the evidence produced.
Methods: as part of the priority-setting activities of the US Satellite, we have engaged with multiple stakeholder groups. These include consumer participation through groups such as the March of Dimes and patient advocacy groups and foundations. We are also engaging with the American College of Obstetricians and Gynecologists (ACOG) and with women’s health nursing organizations. Through conference calls and surveys, we are engaging these consumer groups to determine the Review topics most in need of updating and those with the highest potential to contribute to guideline development within the USA.
Results: we have established relationships with the March of Dimes and ACOG and have been discussing the individuals from those organizations who will be involved in the priority-setting activities. There are currently three other patient advocacy groups and nursing organizations who have expressed interest in assisting with this activity. The plan is to hold conference calls and open discussions within the next two months to arrive at the list of priority topics for the US Satellite to assist with Cochrane Reviews in those areas. We will also be including these consumers in the Review training and Review activities, including authorship.
Conclusions: the US Satellite of the Cochrane Pregnancy and Childbirth Group is piloting work to involve and engage with consumers very early in the evidence generation process. We believe this will improve the relevance of Cochrane evidence and will improve the knowledge translation into guidelines and practice and consumer advocacy.
Patient or healthcare consumer involvement: this project is specifically focused on involving consumers and patients in the Cochrane Review processes very early and longitudinally.