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Consumer-Driven Health and Human Services: Nothing about us without us

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The phrase “nothing about us without us” is a centuries-old political slogan declaring that no policy should be created without the full and direct participation of the people who are impacted by that policy. It was adopted by South African disability activists Michael Masutha and William Rowland in the 1990s, and became a call to action around the passage of the Americans with Disabilities Act (ADA) in the United States.  I first heard the phrase in the late 1990s, when I was working as an advocate for mental health group home providers in New York State.  The concept was a simple one.  If you’re going to develop and implement new social policy that impacts people who live with mental illness, include them in the conversation.

Today, I am working for IBM Watson Health, focusing on solutions that help government health and social services programs deliver better outcomes for the citizens they serve.  And the phrase “nothing about us without us” is still relevant to my work, though in a slightly different context. Historically, the end users of software solutions have been left out of the design process of solution development.  But agencies today are intent on empowering citizens to become active participants in the management of their benefits and services rather than passive recipients of service.  Agencies realize that the citizens they serve have different styles of interacting with them. As a result, government organizations need to do a better job of considering their stakeholders and understanding how they consume information. They need to become more consumer-driven.

There are barriers for many segments of the population that make it difficult for people to access information and the programs, benefits and services they need. Software solutions must help the end user overcome these barriers.  And so, agency staff and consumers need to be involved in the design of solutions that help citizens access information, services, and benefits.  Nothing about us without us.

To learn more about making government health and human services more consumer-driven, read the chapter by Ann Kelly – Offering Manager, Adult Protective Services Solution, IBM Watson Health – in Government Health and Human Services: Visions, values, and strategies for the future.


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