Challenging Dogma - Spring 2008

...Using social sciences to improve the practice of public health

Monday, April 21, 2008

The U.S. Surgeon General's Family History Initiative Fails Because Of A Narrow Focus On Technology- Kathy Bacon

The U.S. Surgeon General's Family History Initiative began in 2003. The objective of the campaign is “To help focus attention on the importance of family history, the U.S. Surgeon General in cooperation with other agencies .... has launched a national public health campaign ... to encourage all American families to learn more about their family health history.”

This program has so far failed to achieve much penetration among the general population. Among the reasons I see for this situation are the program’s focus on technical issues such as web tools for the purpose of “making it easy to enter the data”, the limited use of media distribution channels, and finally, a lack of engagement and understanding of the social relationships and motivating factors of the typical “family” itself. To affect health outcomes, an “individual” ultimately needs to “act”, but the process leading to that point, in gathering family history, is one that the “family” can move through, together.

Excessive focus on technical issues such as “making it easy to enter the data”The program jumped into the essentially “technical” tasks of creating web reference documents, and a web-based tool called “My Family Health Portrait” for entering data(1). The Surgeon General's site is at (2). According to a related site, from 2004 through late 2006, “more than 1 million users have accessed the Web-based version or downloaded copies of the "My Family Health Portrait" tool” from the web site, and more than 100,000 printed copies of documents were distributed nationwide (3). However, there are no statistics available on actual utilization of the tools.

The diseases listed by default in “My Family Health Portrait” for scrutiny in one's family are the major chronic conditions of our time: heart disease, stroke, diabetes and several common forms of cancer. Aside from the many clinical advances toward conquering these diseases, modern medicine suggests lifestyle and behavioral changes are high on the list for anyone wanting to tackle these disease tendencies in their family history (4,5).

I believe part of the reason for a default “technical focus” of this program is the background of the driving agency involved. A number of agencies are listed with this program, but the most active appears to be the National Human Genome Research Institute (NHGRI) at the NIH. This agency has a specific technical focus for improving health: genetic mapping of individuals, leading eventually to individually-customized medicine. It was an NHGRI team which created the web tool, now in its 2nd revision (6). Paper-based forms are also available for download off their web site, but obviously web access is required to find these, as well. The content and flow of the tool is well-designed and easy to use; it appears to have been a major focus to date in the program. The NHGRI has a huge web site at and periodically evaluates the organization and navigation of the site(7).

According to NHGRI officials, the Family History Program is a step toward sequencing an individual patient's genome. The purpose of such projects is to enlarge public understanding support for such goals(9). There is nothing wrong with this, it is important work; however, this type of emphasis can tend to overlook social or behavioral considerations. If there is a behavioral model involved in the design of this campaign, it appears to be the Health Belief Model --- give people information, and they will weigh the benefits and risks, then act.

Genetic risk factors for disease are important but are only part of the picture. As the CDC web site discussed with regard to stroke, “Genes play a role in stroke risk factors such as high blood pressure, heart disease, diabetes, and vascular conditions. It is also possible that an increased risk for stroke within a family is due to factors such as a common sedentary lifestyle or poor eating habits, rather than hereditary factors“(5).

Limited use of media restricts the audience
A limitation of this campaign is its failure to effectively target a wide, diverse audience through various distribution channels. A communications model which could have applied to this campaign is the Diffusion of Innovations model, in which the primary concern is “the process by which a behavior or technology makes its way into a population and is (or is not) adopted.....Diffusion is the process by which an innovation is communicated through certain channels over time among members of a social system” (10). A key concept in this model are different classes of “adopters” who pick up the behavior at various stages of diffusion; the behavior or innovation then passes to other people and gradually spreads out to reach a wide audience(10). The Family History campaign has been primarily marketed on a web site and through health care providers; there is little mass media coverage. If the designers of the campaign had used the Diffusion of Innovations model as a framework, we could regard the current users of the web tool as “early adopters”, but there has been little momentum to carry it beyond this group. The resulting audience to this campaign is one of Internet-connected, computer-literate individuals with regular access to an individual health care provider – in other words, higher socio-economic classes.

Mass media usage seems to be limited to periodic news releases, such as the Surgeon General's message at Thanksgiving in which he designated Thanksgiving “national day of family medical history”. The choice of the Thanksgiving holiday as the “national day” appears to be areas appropriate for several reasons -- it is not a religious holiday, and many people, including immigrants, celebrate it. However there is no reason to limit this to one day, and there may be good reasons a particular family would NOT wish to engage in discussions of disease during a family gathering. Family gatherings are often scenes of tension as well as joy. Discussions of a family history of disease with respect to departed family members may appear disrespectful or even morbid. Even worse, a detailed discussion of patterns of disease among still-living relatives will likely leave them feeling under attack, especially if this occurs in a large gathering. Better that these types of discussion occur quietly, on the side.

Materials primarily focused on the web restrict the primary audience to people with Internet access and comfort with computer technologies. Although Internet penetration has grown substantially in the U.S. during the last 10 years, it varies widely by ethnic group, education, and socio-economic status, and even the group with the highest percentage of computer and Internet access at home (non-Hispanic whites) stands at only at 59% of households. African-Americans and Hispanic households have about half that (11).

In addition, the program has produced educational papers and videos for health care providers (12). These are intended to emphasize the importance of family history to health professionals, who may underestimate its value, or who do not have time to gather such information from all patients; the program hopes interactive web software tools will relieve them of some of this burden (13). Physicians are an important source of health information for many Americans, but an emphasis on disseminating materials through health care providers restricts the audience to people who visit a physician on a somewhat regular basis. It is possible that program flyers have been distributed in health centers by local organizations, but based on the type of “program news” which appears on their web site, this doesn't appear to have been a high-level program activity (14).

The emphasis on materials provided through a physician overlooks people without insurance who will typically seek health care only in an emergency and those who either can not visit a physician regularly, or who are uncomfortable in doing so. Even among the insured, younger adults, and men of many ages, only go to the doctor if something is seriously wrong. Reports on physician office visits in 2000, by age, show that those 65 and over visit physicians at twice the rate of those ages 45-64, and three times the rate of those ages 44 and below(16b). A lack of insurance is a barrier for many people: in 2002, 11% of non-Hispanic whites were uninsured, compared to 20% of African Americans, 18% of Asian Americans, and 32% of Latinos. The poor and people who are part of a minority group, are four times as likely to be uninsured, as are higher-income white persons (15).

In terms of office-based physician visits, the visit rate for white persons was about 48 percent higher than for black persons. Other studies have documented that black Americans are more likely to use hospital outpatient departments (OPDs) and clinics as their usual source of care and that a greater percentage of white persons use private physicians’ offices as their usual source of care. Some possible reasons behind disparities between black and white persons in the utilization of health care services include historical patterns of the provision of care, perceptions of both providers and care-seekers, and financial and cultural barriers to care“ (16).

The Program Does Not Take Advantage Of Social Relationships And Motivating Factors Within The Family Itself
The program refers to “family health history”, but does not take advantage of the social relationships and motivating factors of the family itself. Briefly, the "target" audience appears to be younger adults, probably because they would have the most to gain from adopting new health behaviors. The process of looking at family health history doesn't need to start with that age group to be effective for the family, however, and the failure to engage or target the elders of the family as a starting point is a failure of the campaign.

The current campaign materials created for physicians are an example of this. In spite of limitations in distributing information through physicians (discussed as part of argument #2 above), this is still an effective way to communicate health issues to people with insurance. For Thanksgiving 2007, the NHGRI created a series of five public service announcements for health care providers, in PDF form; these are available on the NHGRI web site. These profile “who to talk to” among a physician's patients -- a target audience. The example patients are in their 30's(2).

From a “family” standpoint these materials are leaving out the parents and grandparents of individuals in their 20s, 30's, 40s etc. Bypassing the elders as a significant point of entry for the family is a failure of the campaign. This was most likely not a deliberate choice, but rather an assumption about the primary audience for the Family Health History campaign.

Elderly family members can play multiple roles in the subject of family medical history. They are more likely to have medical coverage through Medicare and to see a doctor regularly, which provides multiple opportunities for a health care provider to bring up the subject of family health history. Special take-home materials should be created for them. Aside from looking to their own health as they age, elderly family members may be motivated to influence their middle-aged sons and daughters to explore better health behaviors and address risks, and they are the most likely to know about their family history. Thus, the individuals who may have the most to gain in the long run may not be the easiest or best targets for the initial campaign which gets the social network of the family motivated. Several members of the family can be involved in gathering family medical history data. Anyone can then enter the data into the web tool and create reports for family members.

However, for many families, the step involving talking about health history may be uncomfortable and may be the most difficult to begin. The program would be improved by tailoring the most widely-available materials for social and cultural differences in the way people look at disease. For example, studies have shown that immigrants are less likely to report a family history of cancer; this may relate to some ethnic groups having a more fatalistic attitude toward cancer, such as Latinos when contrasted with white Americans (15b,17). The web page and program materials have been translated to Spanish, but this seems to be a straight-forward translation; there appears to be no further customization for Hispanic or Latino cultural considerations, or other minority groups by the main program.


The Surgeon General's Family Health Initiative is addressing an important topic. There is a wealth of information on the web sites developed for the program, and efforts have been made to create materials to remind health care providers to talk to patients about their family medical history. However, this program fails to achieve much real penetration due to an almost unconscious technical focus on genetics and web-based tools and materials, a lack of mass media coverage, and an initial focus on a narrow age-group within families, rather than the wider family group.

This program is still changing. Starting in late 2006, the NHGRI began implementing demonstration projects focusing on populations of Alaska Natives, and urban Appalachian populations, while the states of Utah, Oregon, Minnesota and Michigan also intended to begin state programs. (8 ,9) Health care workers and their families at Brigham and Women's Hospital in Boston participated in a pilot on the web tool; the next step will be to open it to non-employee patients. (18,19). These pilot project are a good start at broadening out the program but don't address the largest minorities in the U.S.


1. First screen, “My Family Health Portrait”.
2. Family History Page. “My Family Health Portrait”.
3. NHGRI site. News release Nov. 15 2006
4. CDC. “Heart Disease Prevention: What You Can Do”
5. CDC. "Stroke Prevention".
6. “About box” in web tool “My Family Health Portrait”.
7. NIH, Evaluation of NHGRI Web sites.
9. NHGRI. "New Family Health History Projects Focus on Alaska Native, Appalachian Communities"
10. Edberg, Mark. Essentials of Health Behavior. (a p.45) TransTheoretical Behavioral model. (b p.56) Social Network Theory. (c p.58) Diffusion of Innovations Model.
11. U.S. Census Bureau. Computer and Internet Use in the United States: 2003. ( Latest available report as of April 1, 2008.
12. Surgeon General.
13. Guttmacher et al. "The Family History — More Important Than Ever". The New England Journal of Medicine Volume 351:2333-2336 November 25, 2004 Number 22
14. NHGRI site. “Genetics and Genomics for Patients and the Public”.
15. Bodenheimer, Thomas S., Grumbach Kevin. Understanding Health Policy: A Clinical Approach. (a) p.17 (b) p.24, 26.
16. CDC Health Care Utilitization report. DHHS Pub No. 2004-1031. 03-0357 (1/04) (a)p.33 (b) p.31.
17. HealthDay News, 12-10-2007. "Immigrants Less Likely to Report Family History of Cancer"
18. Brigham and Women's Hostpital. Family History Project web site.

Labels: , ,


Post a Comment

Subscribe to Post Comments [Atom]

<< Home