Building a Crowd community of 'citizen scientists' in the US through engagement and strategic partnerships

Article type
Authors
Gordon C1, Gilbert J2, Helfand M3, Noel-Storr A4, Elliott J5
1Oregon Health & Science University, Center for Evidence-Based Policy; US Cochrane West
2US Cochrane West; Portland Veterans' Affairs
3US Cochrane West; Portland Veterans' Affairs, Oregon Health & Science University
4Cochrane Crowd
5Cochrane Australia
Abstract
Background:
This project was a 14-month pilot designed to transform the translation of research into practice. It is a collaboration between Cochrane groups in Australia, the UK and the US. Project staff engaged a wide spectrum of consumer and professional organisations to identify potential US partners in the work of Cochrane Crowd and Living Systematic Reviews. It was funded by the Robert Wood Johnson Foundation.

Objectives:
The over-arching objective was to build an active online community of 'citizen scientists' by developing strategic partnerships with US consumer and professional organisations.

Methods:
We developed a multi-tiered, multi-phased approach to partner engagement that included both targeted and broad outreach to consumer and professional organisations followed by efforts to strengthen and deepen relationships with interested organisations. Methods of engagement included informational webinars, conference calls, live demonstrations of Cochrane Crowd, and invitations to evaluate online materials and disseminate recruitment materials.

Results:
Each phase and method of engagement was successful in developing relationships. We gained interested partners through both targeted and broad outreach. As a result of the engagement work the US Crowd community grew by approximately 2000 members in the nine months of active recruitment. In addition, two partner organisations, the CDC Community Guide and the American Academy of Family Physicians, agreed to long-term participation with an aim to develop Living Systematic Reviews or Living Guidelines. These organisations intend to engage consumers and patients in the co-production of evidence through use of the Crowd.

Conclusions:
Existing systems of health evidence generation are expensive and resource intensive. Consumer and professional organisations in the US are interested in Cochrane's new system of evidence generation, which promises to be more efficient in getting necessary information into the hands of decision-makers in a timelier manner. Building partnerships with organisations requires time and resources to orient and educate leadership and membership about new methods of evidence production but the potential benefits of this work are substantial.

Patient or healthcare consumer involvement:
Evaluation of written materials, co-production of evidence, recruitment to Crowd.