Until recently, involving people with lived experience in the development of social change programs has been almost exclusively limited to civil society organizations. The ways in which this has been done include participation on advisory committees, co-design of programs, inclusion in focus groups and surveys, involvement in peer-to-peer programs, and the development of tools to help guide personal treatment or life choice decisions.

The Canadian Association of People Who Use Drugs is an organization that aims to raise the voice of people who use drugs throughout the policy-making process and at every level of government. “Nothing About Us Without Us” is their guiding principle, and their board of directors is composed entirely of people with lived experience of drug use. The organization’s 2014 report, Collective Voices Effecting Change, highlights key issues for people who use drugs in Canada, current actions by peer-run organizations of people who use drugs, and what the organization’s plans are to address these issues. Along the same lines, the British Columbia Centre for Disease Control’s Peer Engagement and Evaluation Project creates opportunities for people with lived experience of substance use to engage as experts and use their lived experience to inform effective health service programming and delivery.

In the private sector, the model has been what I describe as “about us, without us.” In doing research for this book, I couldn’t find a single example of a business that has adopted the approach of involving people with lived experience, and it’s safe to assume that virtually no businesses are actively involving people with lived experience — or the few that are, do not believe it’s important enough to communicate. However, the lack of “first voices” limits the effectiveness of these corporations’ social change initiatives and deprives them of other benefits including increased legitimacy and authenticity, improved program efficacy, and innovation and enhanced ability to build social change partnerships.

Read the full article about businesses including people with lived experience by Paul Klein at Stanford Social Innovation Review.