Communications with research participants and communities: foundations for best practices

Communities and research participants increasingly feel that they have rights to be equal partners with researchers and to have access to the results of studies to which they have contributed. Concurrently, research sponsors have become aware of legal liabilities, societal repercussions, and credibility impacts of ignoring research communication responsibilities. However, issues related to research communications are rarely discussed at professional meetings or taught in academic programs. As a result, individual investigators may not be clear about their duties to communicate the results of their research. It is important to address this gap between expectations and abilities, because researchers' lack of communication fosters a climate of distrust in science and implies disinterest or disrespect for participants and communities. Ethical, legal, and professional frameworks and practices were reviewed to develop insights about principles, guidelines, and means that can be used to promote best practices. A review of general research guidance and specific requests for proposals revealed sponsors' communication priorities. While there are barriers to research communication, there is an increasing awareness among sponsors and investigators that effective and responsive communication is not a cheap or uniform add-on to a project or proposal. Communications must be tailored to the project considering all potential stakeholders, and resources need to be allocated specifically for communication activities within projects. Researchers, sponsors, professional societies and academia all have opportunities to improve principles, policies, frameworks, guidelines and strategies to foster "best practice" communication of research results.