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Creating Customizable Tools

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Guide Content | Chapter 3: Marketing and Outreach


Program Spotlight: Community Centered Family Health History Project

Genetic Alliance

Synopsis:

In 2008, Genetic Alliance released an RFP for organizations to use an online tool to customize the Does It Run In the Family? Toolkit, including “A Guide to Family Health History” and “A Guide for Understanding Genetics and Health.” Awardees adapted the Does It Run In the Family? Toolkit, disseminated it to community members, and evaluated whether the tool encourages healthy decision-making and collection of family health history. The toolkit was used within existing programs and initiatives to integrate conversations about family health history seamlessly into diverse communities across the country. In 2011, Genetic Alliance awarded a second round of partners to customize and disseminate booklets with an emphasis on integrating family health history into ongoing programs and initiatives.

Awardees include the Alpha-1 Foundation, Institute for Cultural Partnerships, Intermountain Healthcare, Iona College, National Council of La Raza, National Psoriasis Foundation, Office of Justice and Peace/St. Mary’s Health Wagon, Seattle Indian Health Board’s Urban Indian Health Institute, Angioma Alliance, Brookdale University Hospital Medical Center, Duke University Institute for Genome Sciences & Policy, Genomedical Connection, Heredity Project, Lesbian and Gay Family Building Project of the Ferre Institute, Inc.Progreso Latino, Southern Missouri Telehealth Genetics Services, University of Oklahoma Health Sciences Center College of Medicine, West Side Community Health Services. For more information on awardees and their programs, visit http://www.geneticalliance.org/ccfhh.awards.

The Does It Run In The Family? Toolkit is culturally sensitive and adaptable to the language and linguistic needs of diverse groups of people, and at www.familyhealthhistory.org communities and organizations can customize their sets of booklets to include conditions and personal stories specific to their members.

Genetic Alliance is a nonprofit health advocacy organization committed to transforming health by engaging individuals, families, and communities. By creating accessible tools with and for the community, Genetic Alliance hopes to promote conversations about health within the family and translate knowledge of family health history into healthy choices. Although the award periods ended, partners continue to use the family health history materials in their programs. This project was made possible by a cooperative agreement with the Genetics Services Branch of the Maternal and Child Health Bureau of the Health Resources and Services Administration.


Sharing Lessons Learned

Why did you create this project?

Evaluation of family health history represents a first step in identifying genetic contributors to health and can serve as an important basis for improving healthcare and encouraging a healthy lifestyle. Though several family health history tools exist, very few had previously been evaluated in a systematic, evidence-based study to measure outcomes and effectiveness. The fundamental purpose of this project was to create and evaluate a customizable, nonmedical family health history toolkit informed by oral history and folklore traditions.

Why did you create your products with customizability in mind?

Given the diversity of individuals, families and communities, it is impossible to create a one-size-fits-all family health history tool. With that in mind, Genetic Alliance created a customizable toolkit that groups can add pictures, stories, relevant information, and resources to. The first booklet, a “Guide to Family Health History” provides information to help families collect, organize and understand their family health history and why it is important. It can be customized with personal health stories, photos, quotes, interview questions, family tree information, and resources.  The second booklet, “A Guide for Understanding Genetics and Health,” explains the basics of how genetics impacts health and how knowledge of family health history can help individuals stay healthy.  It also includes information on health conditions that run in the family and who are at risk. It can be customized with risk statistics, health conditions that are particularly prevalent in a family or community, and additional resources.

How did this project create a framework for future projects? What do you see as the advantages of creating products that can be customized to specific populations?

Creating a customizable resource allows for diverse partnerships and buy-in from many different communities. By offering a template that diverse partners can customize, we helped create not just one resource but multiple resources that are relevant and appealing to specific communities. The template is still available online for customization by individuals and organizations for future outreach and education efforts, and is still being used by different populations in their communities.

What other strategies did you use that resonated with participants?

The ultimate goal of all of the projects was to create a tool that incorporates the knowledge and methods of oral historians and folklorists to aid individuals in better describing, archiving, and understanding their own FHH. Given the diversity of individuals, families, and communities, it is impossible to create a one-size-fits-all family health history tool. The tool was designed with community input and the intention to create modular sections that could be customized to different communities. This adaptability ensures a more accessible tool whose utility can be measured effectively on a community level. In addition, the involvement of established community organizations fuels the sustainability of the initiative.

What advice would you give to others on creating customizable resources?

When creating customizable resources meant for diverse audiences, it is important to take a flexible approach to customization of materials. With a flexible definition and a flexible approach, the varied needs of different communities can be met in a culturally appropriate way. This process of customization and evaluation of the effectiveness of the resources in each community allowed us to actively collect data and evidence base for this tool. We created the Community Centered Family Health History Collaboration Across Communities: How Do You Make Research Community- Specific and Universally Relevant? to share the lessons learned in engaging with the diverse communities with the customized family health history tools. 

What challenges did you face in working with multiple partners?

During the course of the project, Genetic Alliance has worked with all types of communities including American Indians/Alaska Natives, African Americans, Latinos, residents of Appalachia, patients in a healthcare service setting, members of disease-specific support groups, elderly Americans, students in a university setting an more.  We found that in order to develop useful, effective tools that are widely used, it is imperative to engage the audiences that will be the ultimate beneficiaries of the tool. Working with multiple different partners presented some challenges. For example, university partners frequently encountered bureaucratic hurdles, particularly around contracts and copyright. Community leaders faced different challenges such as limited resources and staff.  Overall, different work styles, resources, and time zones raised obstacles that required significant time and energy to have successful outcomes.

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