Product Details

Author Information

Corresponding Author
Vaughn Edelson
Genetic Alliance
4301 Connecticut Ave NW
Suite 404
Washington, DC 20008
United States
p: 202.966.5557
f: 202.966.8553
vedelson@geneticalliance.org

Authors (listed in order of authorship):
James O'Leary
Genetic Alliance

Sharon Terry
Genetic Alliance

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Allied Health, Medicine, Nursing, Public Health, Social Work, Health Information Management

What specific topics does your product address?

Advocacy, Asthma, Chronic disease, Community engagement, Community health , Community-based education, Cultural competency , Diabetes, Education, Environmental health, Health behavior, Health disparities, Health education , Interdisciplinary collaboration, Maternal/child health, Mental health, Minority health, Overweight/obesity, Physical activity/exercise, Prevention, Primary care, Rural health, Social determinants of health, Substance use, Tobacco use, Urban health, Women's health

Does your product focus on a specific population(s)?

Applicable to and customizable for all populations

What methodological approaches were used in the development of your product, or are discussed in your product?

Community needs assessment, Community-academic partnership, Community-based participatory research , Focus group , Quantitative research, Survey

What resource type(s) best describe(s) your product?

Customizable health guide

Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

The Does It Run In the Family? online tool helps users create customized family health history (FHH) materials for their family, organization, or community. The tool combines family health history, oral traditions, and genetics in order to help individuals and families gather their health history and use that information to make positive health choices. The tool allows users to customize two booklets that together help people collect, organize, and understand their FHH. The first booklet, “A Guide to Family Health History”, provides basic information on FHH and why it is important, how choices can impact your health, what information to collect, and how to collect and organize it. This booklet can be customized with personal health stories, photos, quotes, interview questions, family tree information, and local resources. The second booklet, “A Guide for Understanding Genetics and Health”, explains the basics of genetics, inheritance, and health conditions that can run in the family. Users can add conditions to the tool’s library and customize risk statistics and hints for health to be more relevant to their families and communities. Users can also customize organizational information and include community-specific links. The customizable nature of the tool makes it relevant and accessible to diverse communities, however those communities may be defined.

2. What are the goals of the product?

Communication is key to unlocking one’s family health history. Genetic Alliance developed the online customizable Does It Run In the Family? tool to allow any user to create a unique family health history (FHH) tool that can be shared with his or her family, organization, or community and discussed with family and healthcare providers. The online tool is based on a paper tool, the Does It Run In the Family? toolkit, the goal of which is to help people understand the importance of knowing and talking about FHH within families and with a healthcare provider. The two booklets in the toolkit provide suggestions and resources to help people not only talk about the health conditions affecting their families, but also use that information to maintain and improve health. Ultimately, we hope this knowledge of FHH will translate into healthy behaviors and healthy decision-making.

The online tool was designed to encourage users to input their own community-specific information and resources, but it contains libraries of stories, photos, quotes, and health conditions for users to choose from if they are not able to gather their own. The goal of the booklets is to help individuals, families, and communities use their new knowledge of FHH to increase their communication about health and become healthier people.

No one should have to reinvent the wheel when it comes to FHH materials. This tool gives people a resource to build on in order to disseminate unique, culturally sensitive information, rather than having to devote time to writing and designing a basic manual on FHH. The online tool serves to promote sustainability of the Does It Run In the Family? toolkit and FHH in general in various and varied communities.

3. Who are the intended audiences or expected users of the product?

These booklets are useful for any group of people that has something in common: a family name, geography, job, culture, race or ethnicity, age, gender, sexual orientation, disability or other health condition, or a shared interest. The customization of booklet content allows for a wide range of potential audiences. The tool was originally conceived for organizational and community audiences, but is equally useful for individual families. Current registered users represent disease-specific and community-based organizations, universities, hospitals and clinics, advocacy groups, companies, and more. More than 20 partners have already customized the booklets for different target audiences and types of organizations or systems (employee wellness programs, medical schools, fitness centers, etc.)

4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

Users must register and create a login before beginning customization. Once a user starts customizing a booklet, look for the glowing yellow areas – these are the customizable sections. In book 1, there are libraries for quotes, health stories, and photographs. In book 2, there are condition libraries from which to choose. A “Help” button within the tool provides essential tips and other guidelines for customization.

5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

Family health history is an accessible tool that captures genetic, lifestyle, and environmental factors; allows a healthcare provider to diagnose conditions and understand risk; increases health and genetics knowledge for the individual and the family; and promotes conversations about health in the family and community. The evaluation of an individual’s family health history (FHH) represents a first step in identifying genetic contributors to one’s health and can serve as an important basis for improving healthcare and encouraging a healthy lifestyle1-9.

Collection of a thorough FHH has been shown to be highly predictive, identifying individuals at risk for many common, complex conditions including cardiovascular disease, cancer, and diabetes10-12, as well as neurologic and psychiatric conditions and autoimmune disorders. Yet, the recent National Institutes of Health (NIH) State of the Science Conference Family History and Improving Health concluded that there is insufficient evidence to demonstrate the validity of FHH collection in the primary care setting13. This product and the project that led to its development reflect a belief in the validity of FHH collection and discussion outside the primary care setting. We hypothesized that accessible family health history tools produced by the community, for the community, would promote conversations about health within the family and translate knowledge of family health history into healthy choices.

The Does It Run In the Family? tool builds on this idea, facilitating the creation of personalized FHH materials for families and communities that we hope will lead to greater understanding about FHH and a greater sense of responsibility and ownership around an individual’s health.

6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1. Wolpert, C.M. & Speer, M.C. Harnessing the power of the pedigree. J Midwifery Womens Health 50, 189-96 (2005).
2. Johnson, J. et al. Utah's Family High Risk Program: bridging the gap between genomics and public health. Prev Chronic Dis 2, A24 (2005).
3. Rich, E.C. et al. Reconsidering the family history in primary care. J Gen Intern Med 19, 273-80 (2004).
4. McCusker, M.E. et al. Family history of heart disease and cardiovascular disease risk-reducing behaviors. Genet Med 6, 153-8 (2004).
5. Guttmacher, A.E., Collins, F.S. & Carmona, R.H. The family history--more important than ever. N Engl J Med 351, 2333-6 (2004).
6. Beery, T.A. & Shooner, K.A. Family history: the first genetic screen. Nurse Pract 29, 14-25 (2004).
7. Awareness of family health history as a risk factor for disease--United States, 2004. MMWR Morb Mortal Wkly Rep 53, 1044-7 (2004).
8. Ahluwalia, I.B., Mack, K.A., Murphy, W., Mokdad, A.H. & Bales, V.S. State-specific prevalence of selected chronic disease-related characteristics--Behavioral Risk Factor Surveillance System, 2001. MMWR Surveill Summ 52, 1-80 (2003).
9. Williams, R.R. et al. Usefulness of cardiovascular family history data for population-based preventive medicine and medical research (the Health Family Tree Study and the NHLBI Family Heart Study). Am J Cardiol 87, 129-35 (2001).
10 Fuchs CS, Giovannucci EL, Colditz GA, Hunter DJ, Speizer FE, Willett WC. A prospective study of family history and the risk of colorectal cancer. N Engl J Med 331, 1669–74 (1994).
11 Bennett RL: The Practical Guide to the Genetic Family History. New York, Wiley-Liss, (1999).
12 Yoon PW, Scheuner MT, Peterson-Oehlke KL, Gwinn M, Faucett A, Khoury MJ: Can family history be used as a tool for public health and preventive medicine? Genet Med 4, 304–10 (2002).
13 Consensus Development Panel. National Institutes of Health (NIH) State-of-the-Science Draft Statement: Family History and Improving Health. (2009).

7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

• For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
• For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
• For other types of work, discuss how the project was developed and reasons for the methodological choices made.

The Does it Run in the Family? tool is a product of the Community Centered Family Health History project, a collaboration with Alpha-1 Foundation, American Folklife Center, American Society of Human Genetics, Health Resources and Services Administration, Institute for Cultural Partnerships, Intermountain Healthcare, Iona College, National Council of La Raza, National Psoriasis Foundation, Office of Justice and Peace/The Health Wagon, and Seattle Indian Health Board.

A broad definition of community was employed for this project: A population that may be defined by geography, culture, race, ethnicity, age, gender, sexual orientation, disability, or other health condition, or groups that have a common interest or cause, such as health or service agencies and organizations, health practitioners, policymakers, or groups with public health concerns. Genetic Alliance partnered with organizations that work closely with each type of community to create tailored FHH materials with the belief that accessible tools produced by the community, for the community, would promote conversations about health within the family and translate knowledge of FHH into healthy choices.

The research, engagement, evaluation, and education undertaken in the CCFHH project were community-based. The first round of community partners adapted a set of two booklets (“A Guide to Family Health History” and “A Guide for Understanding Genetics and Health”, collectively referred to as the Does It Run In the Family? toolkit), disseminated it to community members, and evaluated whether the toolkit encourages healthy decision-making and collection of family health history. The evaluation focused on both the usability and utility of the toolkit: (1) Does the Does it Run in the Family? toolkit encourage discussion and collection of family health history information? and (2) Does the information collected encourage behavioral changes that lead to improved health for individuals, families, and communities?

Communities evaluated the booklets through health liaison training, community recruitment, surveys, focus groups, and interviews. Partners then recruited 25 families each to conduct the formal evaluation through pre- and post-toolkit use surveys. Recruitment occurred at eight sites, representing seven community partner organizations and a wide variation in demographic and genetic identity. Participants were eligible if they were aged 18 and over and had at least one first-degree family member that could be approached for participation in the study. Partners tailored their recruitment and dissemination using methods known to be successful in their communities (for example, the promotores de salud model at National Council of La Raza sites).

We measured several variables that we hypothesized to change as a result of exposure to the family history toolkit. These measures included reading or hearing anything about family history, talking to a provider and to family members about family history, hearing anything about family history, or sharing materials about family history with family members. We also asked participants how much they knew about family history and how important family history was to health. We asked participants several questions about whether they used the materials, how often they used the materials, and how they used the materials together with family members.

A second round of partners, CCFHH Program Awardees, also customized and disseminated booklets, with an emphasis on integrating family health history into ongoing programs and initiatives. Each partner directly engaged members of the community in order to collect the customizable information for their booklets.

The current product is an online version of the booklets customized by project partners that allows easy customization by any user for their family or community. Evaluation of the paper booklets informed development of the online tool.

8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

Genetic Alliance worked with project partners, a graphic designer, and a web development firm to develop the online Does It Run In the Family? tool. Genetic Alliance released a request for quotes with specifications for the website based on customization experience with the original project partners. The two booklets had already been formally evaluated by partners in eight communities, as described above, so the online template was based on preliminary results of that evaluation.

In 2008, Genetic Alliance distributed 10 Community Centered Family Health History Program Awards for organizations to customize the booklets and integrate them into ongoing programs and initiatives, to seamlessly incorporate conversations about family health history into diverse communities across the country. Program Awardees were supposed to use the online tool for their customization, but significant delays in web development prevented this from happening, and Genetic Alliance program staff assisted with the customization. However, this proved to be a benefit for the online tool. Partners were able to provide feedback on both the booklets and the online tool as it was being developed.

With original project partners, it was determined which sections of the booklets would be customizable: personal health stories, photos, quotes, health conditions information, resources, and a few other sections. Later, when Program Awardees began thinking about customization, they suggested additional areas in which customization would greatly enhance the cultural competence and community relevance of the materials. This feedback was relayed to the developers working on the site. Some Program Awardees conducted evaluations of the booklets, though it was not a requirement of the Awards. These surveys and focus groups further informed the development of the online tool, as some of the suggestions were and will continue to be incorporated into tool revisions.

The tool contains several “libraries” – of health stories, photos, quotes, and health conditions. The story library is composed of stories from partners’ customized booklets as well as stories based on real experiences. Partners obtained permission from participants to have their stories included in the library, while other stories were composites of multiple people’s stories. Stories in the library can be edited – so a story about a daughter with asthma, for example, can be edited to be about a son with diabetes.

The photos in the library are stock photography purchased from Getty Images.

The quote library was compiled by soliciting quotes from partners who agreed to have their names and affiliations associated with users’ booklets. We also used quotes by public figures that appeared in various media. Unlike the stories, users cannot edit quotes they select from the library. Because the quotes are linked to a real person’s name, those words cannot be changed.

Finally, there are libraries of health condition information. Like the stories, most of the options currently in the libraries are condition descriptions written by our partners for their customized booklets. When a condition is selected, users can edit a risk statistic and the resources for that condition. When a user requires a condition that is not yet in the library, Genetic Alliance works with them to make sure the content is presented in the appropriate format and adds it to the library as an option for all other users. In this way, library content is constantly growing. Conditions are the only type of information that is automatically added to the overall libraries, though. Stories, photos, and quotes that are entered by a user are only saved to their individual booklets.

9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

Family health history (FHH) has been called the most basic genetic test. The information is easily understood, provides clues to an individual’s current health, and can suggest steps to take to improve and maintain future health. It can be the connection between a person’s health and his or her daily life, as well as the bridge leading to an understanding of the link between genetics and health. The booklets increase awareness and understanding of FHH, and the online tool provides a mechanism to facilitate wide dissemination of this information.

While the impact of the online tool has not been formally evaluated, the booklets have undergone evaluation. One question we sought to address – Does the Does It Run In the Family? toolkit encourage discussion and collection of family health history information? – was answered in the affirmative. The booklets were overwhelmingly felt to be useful and relevant, and communication about health and family history increased in families after the intervention. This underscores our belief that family health history is accessible and applicable across cultures and in disparate environments, from clinics to non-health settings. The messages, including a focus on common, complex conditions, resonate even with members of disease-specific organizations.

For example, when asked to assess the usefulness of the booklets, 38.9% of participants found them to be somewhat helpful, 47.7% thought they were very helpful, and 10.4% extremely helpful. Only 1.3 percent of participants found the booklets to be unhelpful. Responses were overwhelmingly positive, with the vast majority of participants finding the books useful, helpful, relevant, and applicable to their families.

Similarly, we have received positive feedback from users of the online tool about its usability in their programs and projects. There is no one-size-fits-all family health history resource; this tool allows everyone to easily create one-of-a-kind resources for their families, organizations, and communities. It has great potential impact: The customization options mean that families and communities can create relevant, accessible materials without investing the resources to produce them from scratch. These resources can then be directed to dissemination, rather than development, of the health educational materials.

Genetic Alliance distributed CCFHH Program Awards for organizations to incorporate FHH and the booklets into existing programs and initiatives. There were over 40 applicants, and the range of innovative ideas for integration was extensive. Through Program Awardees, the tool and the booklets have already been integrated into a variety of settings: an employee health and wellness system; a medical school curriculum; libraries; a congregational nurse program; a bilingual, multigenerational community center; a telehealth network; hospitals and clinics; a genomics research initiative; a disease awareness campaign; and more. There is great potential for others to replicate the Program Awardee models in their own organizations; to pick and choose pieces from Awardee programs to incorporate into their own initiatives; or to use Awardees’ innovations to inspire completely new programs and vehicles for dissemination of FHH information.

10. Please describe why you chose the presentation format you did.

The process of customizing the booklets with each partner, while it allowed great flexibility, is not sustainable. Genetic Alliance staff will not be able to adjust the template for every individual or organization that wants to utilize the booklets with their family or community, and certainly cannot afford to hire someone to do so. Therefore, it was integral for the sustainability of the booklets to convert them into an electronic form that would allow anyone who is interested to customize the booklet as many times as they like. The tool is electronically connected to a printer so that users can order hard copy versions of their unique booklets for the cost of printing and shipping. Users can also download a high quality PDF version of their booklets, for free, to be posted to a website, emailed, or otherwise shared electronically. While this brings up concerns that the tool might not reach underrepresented and underserved populations who might not have access to a computer or the Internet, our hope is that most, if not all, such populations are engaged in some way with an organization that does have the resources to customize and print booklets that can be disseminated throughout those communities.

The booklets themselves take the shape and form they do based on extensive input from partners, including experts in genetics, folklore and oral traditions, and design, as well as feedback from community advisory boards, focus groups, and others.

11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

No formal evaluation of the online tool has been conducted yet, but all CCFHH Program Awardees completed a survey about the tool’s usability, and all users of the tool are invited to complete a survey about the customization process when they download their booklets. Ninety-six percent of users (n=27) found the tool to be user-friendly; 100% of users positively ranked the overall design and aesthetic of the tool between (70% “Excellent”); and 100% of users said they would share the tool with their partners.

The tool is electronically linked to a printer so that users can order hard copy versions of their unique booklets for the cost of printing and shipping. However, printing costs are a barrier to sustainability – printing is expensive, and many small, community-based and disease-specific organizations do not have funds to print. Still, the Internet is nearing ubiquity, and for free, users can download a high quality PDF version of their booklets to be posted to a website, emailed, or otherwise shared electronically. While this brings up concerns that the tool might not reach underrepresented and underserved populations who do not have access to a computer or the Internet, as mentioned above, our hope is that most, if not all, such populations are engaged in some way with an organization that has the resources to customize and print booklets that can be disseminated throughout those communities.

The tool’s online nature is also its strength. Many communities want and need community-specific health resources but lack the resources, both time and financial, to create them. No one should have to reinvent the wheel when it comes to FHH materials. This tool gives people a resource to build on in order to disseminate culturally sensitive health information. Does It Run In the Family? contains some content that is static across communities: a gene is always a gene, in Harrisburg, PA, as well as in Oakland, Salt Lake City, and New Rochelle, NY. However, the personal health stories, photographs, and specific health conditions presented in each user’s customized version of the toolkit are particular to that community. This allows organizations to devote more of their energies to dissemination and community engagement with a product that is uniquely their own.

Genetic Alliance will review the content on the health condition pages every year to make sure it is in line with current research and recommendations, such as those given by the U.S. Preventive Services Task Force. However, Genetic Alliance does not oversee any customization except the creation of new health condition pages, so there is a real possibility that users – whether knowingly or not – might enter inaccurate or out-of-date information. Therefore, individuals who receive the booklets – from family, a community leader, an organization, etc. – must trust that source. We recommend individuals use the Trust It or Trash It? tool for assessing the quality of information. This warning is included in the “Learn More” section of the tool.

Community Centered Family Health History project partners represent a diversity of community types, including many disease-specific and community-based organizations as well as universities and other institutions. They provided feedback at every stage of the project – booklet development, customization options, online tool usability – and suggestions were incorporated along the way. Partner opinions were weighed heavily in decision-making, as they represented and were relaying feedback from the community members who would ultimately use the products of the tool. Genetic Alliance took into account conflicting input, cost, and time constraints to make final decisions, but overall approval and consensus were sought whenever possible.

12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

Partnership is a major part of the Genetic Alliance mission and the Community Centered Family Health History project in particular, given the collaborative nature of the project. The coordination among Genetic Alliance, community partners, and HRSA is the foundation of a global collaboration devoted to family health history. CCFHH partners share methodologies with each other as well as with local and national audiences at meetings and conferences focused on community, health, and genetics. In all presentations, all partners are acknowledged as full participants and contributors.

Furthermore, they are recognized as the drivers of the project. On its own, Genetic Alliance has neither the capacity nor the expertise to efficiently and effectively reach out to so many diverse communities. Therefore, the work of community-based partners was integral to every part of the CCFHH process, from project planning to evaluation and dissemination. By design, each of the participating communities represents a different set of needs. To develop a practical, beneficial tool that is widely used, it is imperative to engage the audiences that will be the ultimate beneficiaries of that tool.

All collaborators have been notified of and approved submission to CES4Health.info. In fact, one of our partners was the first to introduce me to the site and suggest submission of Genetic Alliance products.

All partners who participated in the formal evaluation of the two booklets that became part of the online tool had Community Advisory Boards that were consulted throughout the customization and evaluation processes. The University of Washington Institutional Review Board provided approval of the study.