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Highlighting Existing Resources

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Guide Content | Chapter 2: Improving Quality and Accessibility


Program Spotlight: The Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success

Genetic Alliance, Parent to Parent USA, and Family Voices

Synopsis:

The Advocacy ATLAS is an online toolkit with over 240 resources to empower individuals and their families around leadership and advocacy. Resources are grouped within ten categories to allow for easy browsing by topic.  

To create the Advocacy ATLAS, Genetic Alliance, Parent to Parent USA, and Family Voices collected tools and resources from their vast combined networks of parents, parent advocacy groups, disease-specific advocacy groups, disability groups, and other partners. The development team, made up of leaders from Genetic Alliance, Parent to Parent USA, and Family Voices, developed criteria for inclusion, resource categories, and an easy to use format for the toolkit. Individuals with special healthcare needs and their families were an integral part of design: providing guidance and feedback during each step of development to ensure the toolkit is useful and easy to use. Families also shared their stories about advocacy for the site, as personal stories about advocacy to be included on the site.

Development of the site began in October 2012 and the final site was launched in October 2013. This site was developed as an activity of the National Genetics Education and Consumer Network (NGECN) with support from the Health Resources and Services Administration (HRSA), Grant No. U22MC04100, National Coordinating Center for the Regional Genetic Services Collaboratives. This project was funded in part by the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA) Grant No. U35MC16451, Congenital Conditions Program, in partnership with The Arc and Family Voices.


Sharing Lessons Learned

What are the benefits of highlighting existing resources versus creating something new?

In preparing to create this toolkit, we were certain there were already self-advocacy materials in existence, but we were unsure of their quality and quantity. Rather than recreate the wheel, we decided to collect and package existing tools. This had the dual benefit of getting buy-in (and potential links to our completed toolkit) and taking advantage of the work that has already been done. While collecting resources can leave gaps in the final product, in our case we wound up with a much broader range of topic areas than we initially expected. By not making our request for materials too specific, we allowed others to interpret the term “advocacy” in their own way, resulting in a more comprehensive final tool.

How did you identify the key stakeholders and partners for this outreach project?

The first step in this project was to identify the target population. As an activity within the NGECN, the goal of this project was to create a resource that would empower individuals with genetic conditions and their families to access services and support. Genetic Alliance, Parent to Parent USA, and Family Voices all have similar missions yet unique networks of individuals they serve. Our collective goal was to create a tool that would appeal to individuals within all three networks (non-disease specific), focused on empowering individuals. With that in mind, all three partners reached out to individuals within their networks who were the target population for this effort, to learn about their needs and how to design a site to fit those needs.

What challenges did you face in creating a tool that included such a diverse set of resources?

All of the resources had to be carefully vetted to ensure they were relevant, easy to read, person-centered, and available for free online. Because of that, it was critical for us to be clear upfront that not all resources would be accepted. In addition, because the tools were not uniform in their presentation and focus, we did need to create some new content to help weave them all together. In this case, each of the ten topic areas includes a personal story from a self or family advocate about their experience climbing barriers or advocating in that area. 

Pictures from families show that while each person’s experience is unique, some common tools can help support discussions around how to communicate and share your experience with others. Throughout the development process, self and family advocates were consulted about what types of resources to include and how to group them, what to name the toolkit, and how to create an engaging site that individuals and families could relate to. Reaching and engaging stakeholders was not difficult because of the large networks of all three organizations, however, compiling the feedback and needs expressed by stakeholders and creating a tool to address diverse needs was a challenge. 

Do you have another question about this program? Click here to ask a question.


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