Family Health History Coalition for Accessible Family Health History Tools

Family Health History Coalition for Accessible Family Health History Tools

Promote family health history within all types of communities via the creation and dissemination of a how-to guide, Using Family Health History Tools: A Guide to Making Tools Accessible to Your Community, currently available on WikiAdvocacy.

Coalition Membership

The Coalition is made up of a diverse group of organizations, including, but not limited to, those organizations currently involved in family health history projects, community-based organizations, advocacy organizations, researchers, and health professionals.

Audience

The guide is aimed at national, community, and disease-specific organizations interested in promoting the collection of family health history among their members and their locality.

Guide

The goal of the guide is to help organizations use existing family health history tools and create complementary materials that will increase the accessibility of those tools. The guide is a living document in WikiAdvocacy that provides tips for developing new materials and tools, while simultaneously highlighting dissemination techniques and promoting the distribution of existing materials. The guide contains sections outlining the steps that organizations must take if they are to lead successful family health history initiatives, from assessment of community knowledge to targeted dissemination of materials. Coalition members and others are invited to add to and edit this and any other section of WikiAdvocacy.

Join the Coalition

To join the Coalition or suggest new projects for the Coalition, please email Vaughn Edelson at vedelson@geneticalliance.org or call 202.966.5557, x213. Please include the following contact information:

Name:
Title:
Organization:
Address:
Phone:
Fax:
Email:

Frequently Asked Questions

What value will my organization gain from this project?

Not only will your participation with this Coalition enhance your ability to increase access to family health history tools, it will also help your organization refine its outreach practices for other public health initiatives. Many of the topics involved in a successful family health history initiative are universally applicable. Information on how to improve health surveys, focus groups, cultural competency, evaluation, and dissemination will be an integral part of this project. Participation in this Coalition will provide your organization with a forum in which you may share ideas and collect new materials and best practices to incorporate into other projects.

Will the finished product be a printed document?

No. Because the guide will be a living document, receiving continuous updates to ensure that it reflects the newest tools and resources, it will be primarily web-based. It is currently housed in WikiAdvocacy. Issues of Internet accessibility should be minimal because the audience is organizational rather than individual.

Will existing family health history tools be evaluated in the guide?

No. To properly evaluate existing family health history tools, we would have to collect pre- and post-use data on the tool, thereby examining validity and utility. The Coalition is hopeful that this initiative will be an important step in building a landscape that encourages quantitative and qualitative evaluation.

How is the Coalition defining the term community?

For the purposes of this project, the word community is broadly defined. As defined, communities include groups of people living in the same locality; having common interests; sharing ethnic, cultural, or economic characteristics; or possessing a common health condition.

How is the Coalition defining the term family?

For the purposes of this project, a family includes individuals related by ancestry, as well as those individuals who share a close connection that influences behavior and environment. Individual tools highlighted in the guide may use more specific definitions of family.

Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org