No. 12, September 2002

Federal Health Web Sites:Current & Future Roles

Carol Cronin, Consultant

2131 K Street, NW + Suite 500 + Washington, DC 20037 + 202/872-4036 + Fax 202/785-4749

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Summary—An examination of the current and possible future rolesof federal health Web sites, this paper provides an overview of site cat-egories, functions, target audiences, marketing approaches, knowl-edge management, and evaluation strategies. It concludes with a lookat future opportunities and challenges for the federal government inproviding health information online.

The Internet has become part of Americans’ lives. As a tool tofind information, transact business, and connect with others,it has become a routine part of the day for millions of people.According to a recent government report, over half the popu-lation, or 143 million Americans, was using the Internet in Sep-tember 2001—a number that has grown at the rate of 20% ayear since 1998.1 Increasingly, the public is turning to theInternet to assist in health care decision-making. While e-mailwas the top reported online activity (84% of the population),searching for information about health services and practices(34.9%) and government services (30.9%) were among the mostfrequently cited online activities in the government report.

The magnitude of the Internet as a resource in consumerhealth care decision-making has been studied in several sur-veys. Harris Interactive recently found that 110 million adultssometimes go online to look for health information—a num-ber that has almost doubled since 1998.2 Another survey, con-ducted by the Pew Internet and American Life Project, foundthat 73 million American adults (62% of those with Internetaccess) have used the Web to get health or medical informa-tion.3 Importantly, 61% of respondents said the Internet hasimproved the way they take care of themselves either “a lot”or “some.” Interest in health information crosses the age spec-trum, with 42.7% of those over age 55 using health informa-tion online4 and three-fourths of American Internet users be-tween the ages of 15 and 24 using the Internet to find health ormedical information.5

In addition to searching for online health information,Americans are also using the Internet to visit federal, state,and local government Web sites. A January 2002 survey indi-cated that 58% of American Internet users, or 68 millionadults, had visited at least one government Web site—a sharpincrease from the 40 million who had used sites in March2000 when first polled.6 The report found that 49% of thoseusing government Web sites sought advice or informationabout a health or safety issue, while 63% found out aboutgovernment services and 20% got information about, or ap-plied for, government benefits.

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This paper examines the current and possible future role(s)of federal health Web sites in providing medical and healthinformation to the public. It is based on the author’s review ofmany current federal health Web sites, supplemented by inter-views with fourteen federal officials involved in their develop-ment and maintenance. While most of the Web sites reviewedwere those within the federal Department of Health and Hu-man Services (DHHS)—it is important to note that other federalagencies provide health information to the public or a particu-lar constituency. These include, for example, the Federal TradeCommission’s information on consumer health fraud, the De-partment of Agriculture’s materials on nutrition, and theVeteran’s Administration’s, Department of Defense’s, and Of-fice of Personnel Management’s information on health benefits.

OVERVIEW

Categories

There are several categories of federal health Web sitesavailable to consumers. The first type is a cross-governmentagency portal site that includes health information as one topicamong a broad range of available information for the public.The most prominent of these is FirstGov.gov. The site firstopened in September 2000 and was relaunched in February2002. Within the “Citizen Gateway” portion of the site, linksto interactive online health information are available (http://first.gov/Citizen/Services.shtml), as well as a list of health topicson general and specific health and nutrition topics, health in-surance, state and local resources, and consumer safety (http://first.gov/Citizen/Topics/Health.shtml). In addition, there are othercross-agency and cross-topic sites for particular audiences thatinclude health information as one of their topics. These includeFirstGov for Seniors (http://www.seniors.gov), maintained by theSocial Security Administration; FirstGov for Consumers (http://www.consumer.gov/health.htm), which includes consumer pro-tection information from several federal agencies; and FirstGovfor Kids (http://www.kids.gov).

Other cross-agency portal sites focus exclusively on health.Healthfinder.gov (http://www.healthfinder.gov) provides links tohundreds of federal and nonfederal Web sites organized bycondition or disease topic, audience (women, children, etc.),and health providers and insurance. The project is coordinatedby the DHHS Office of Disease Prevention and Health Promo-tion with the active participation of a steering committee com-posed of federal agency representatives and nonfederal con-sumer health information specialists, librarians, and othersactively engaged in online consumer health information.

Web Links — Page 3

http://first.gov/Citizen/Services.shtml

http://first.gov/Citizen/Topics/Health.shtml

http://www.seniors.gov

http://www.consumer.gov/health.htm

http://www.kids.gov

http://www.healthfinder.gov

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Another health portal—MEDLINEplus (http://www.medlineplus.gov)—is maintained by the National Library of Medi-cine (NLM). The site has information on over 500 diseases andconditions from the National Institutes of Health and other gov-ernment and nongovernment sources. There are also lists ofhealth professionals and institutions, a medical encyclopediaand dictionary, health information in Spanish, prescription druginformation, and links to thousands of clinical trials.

A final type of health portal is one that targets a particularhealth-oriented audience and brings together cross agency andnonfederal resources and links. The focus of these sites maybe very broad, for example, women’s health (http://www.4women.gov), girls (http://www.girlpower.gov), or minorityhealth (http://www.healthgap.omhrc.gov). Or, the focus may bevery specific, for example, potential organ donors (http://www.organdonor.gov), patients or families looking for a clinicaltrial (http://www.clinicaltrials.gov), or those wanting informationon fitness (http://www.fitness.gov).

A second category of federal health Web sites is maintainedby DHHS and the agencies within it. The DHHS site (http://www.dhhs.gov) provides access to all agencies within the de-partment. It is currently being redesigned to better meet theinformation needs of the public. Every federal agency withinthe department maintains its own Web site, with many of theagencies also having sub–Web sites that parallel their organi-zational structure. For example, the homepage for the HealthResources and Services Administration (HRSA) includes linksto each of its program areas, such as HIV/AIDS, primaryhealth care, maternal and child health, health professions, andrural health. In some cases, the sub-unit Web sites may all havethe same “look and feel.” In other cases, they may each havetheir own design and navigation approach.

FUNCTIONS

Federal health Web sites serve consumers in a variety ofways. They help consumers learn about a health topic, find aresource they need, choose amongst various health care op-tions, change a health behavior, and participate in the policyprocess. Each of these functions is further discussed below.

Learning about Health Topics and Programs

All federal health Web sites help consumers learn about ahealth issue by providing online information and educationalmaterials. Many health sites include an A–Z disease or condi-tion topic list on or near their home page. For example, clicking

Web Links — Page 4

http://www.medlineplus.gov

http://www.4women.gov

http://www.girlpower.gov

http://www.healthgap.omhrc.gov

http://www.organdonor.gov

http://www.clinicaltrials.gov

http://www.fitness.gov

http://www.dhhs.gov

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on the topic “diabetes” at the MEDLINEplus site (http://www.nlm.nih.gov/medlineplus/diabetes.html) brings up a page thatincludes the following categories of information about dia-betes: the latest news, a general overview of the disease, rel-evant clinical trials, alternative therapies, coping strategies,symptoms and diagnosis, disease management, nutrition, pre-vention/screening, research, specific aspects/conditions,treatment, glossaries and dictionaries, policy issues, and rel-evant organizations. There is also information on diabetesspecifically for children, men, women, teenagers, seniors, andSpanish-speaking users.

In addition to information about diseases and conditions,federal health Web sites also provide information about howto be a better health care consumer. For example, the Agencyfor Healthcare Research and Quality (AHRQ) publishes abooklet on patient safety called Twenty Tips to Prevent MedicalErrors (http://www.ahcpr.gov/consumer/20tips.htm), and the Foodand Drug Administration (FDA) publishes tips and warningsabout buying medicines online (http://www.fda.gov/oc/buyonline/default.htm). Finally, federal Web sites provide infor-mation about federal health programs, such as Medicare (http://www.medicare.gov), the Indian Health Service (http://www.ihs.gov), or the State Children’s Health Insurance Program(http://www.insurekidsnow.gov), for which the public may qualify.

Finding Health Information and Resources

Most federal health Web sites include both consumer-ori-ented educational information generated by the sponsoringagency and links to information provided by other federalagencies, private nonprofit organizations, and, in some cases,commercial organizations. These types of organizations in-clude voluntary health organizations (such as the AmericanDiabetes Association), physician organizations, university andresearch groups, and commercial entities such as news ser-vices and online journals. In some cases, federal health Websites include selection policies regarding links from their sitesto other organizations. The policies include criteria such asthe quality, authority, and accuracy of the linked site’s con-tent, availability and maintenance of the site, and the breadthof information provided.

Referral to state and local resources that can help with ahealth problem is another function maintained by some fed-eral health Web sites. For example, HRSA provides a data-base of community health centers and other primary care re-sources accessible by city, state, or zipcode (http://www.bphc.hrsa.gov/databases/fqhc). The Centers for Medicare and

Web Links — Page 5

http://www.nlm.nih.gov/medlineplus/diabetes.html

http://www.ahcpr.gov/consumer/20tips.htm

http://www.fda.gov/oc/buyonline/default.htm

http://www.medicare.gov

http://www.ihs.gov

http://www.insurekidsnow.gov

http://www.bphc.hrsa.gov/databases/fqhc

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Medicaid Services (CMS) provides an online directory of con-tact information and phone numbers for a wide range of stateagencies offering services to Medicare beneficiaries (http://www.Medicare.gov). The Substance Abuse and Mental HealthServices Administration maintains databases of substanceabuse and mental health programs nationwide (http://www.samhsa.gov/public/look_frame.html).

Choosing among Health Care Options

Federal health Web sites also provide information to sup-port consumers in a variety of health care decisions. In addi-tion to educational information to help with decisions abouttreatment, mentioned above, federal health information alsosupports decisions about choosing and using health care.AHRQ provides a variety of materials that help patients choosequality health care services. These include checklists or ques-tions consumers can ask about health plans, doctors, hospi-tals, and long-term care facilities. They also provide a set ofquestions consumers can ask when considering surgery (http://www.ahcpr.gov/consumer/surgery.htm).

Decision support through the provision of comparative or-ganizational information is another function performed bysome federal health Web sites. Medicare.gov provides search-able databases that identify and compare nursing homes, Medi-care HMOs, Medigap plans, and end-stage renal disease di-alysis facilities on a range of measurements, including orga-nizational description, benefits, quality, and customer satis-faction. Medicare.gov is moving towards more customizeddecision support through its Medicare Personal Plan Finder(http://www.medicare.gov/MPPF/home.asp). After answering a fewdemographic and interest questions, the user is presented witha narrower choice of plan options to investigate further.

Changing Health Behavior

Encouraging health care behavior change is also a functionof some federal health Web sites—although this type of func-tionality was less often mentioned by those interviewed andwas less common on federal health Web sites. Stopping harm-ful health habits, such as smoking or substance abuse, or en-couraging positive health habits, such as exercise or good nu-trition, is the focus of some federal efforts. Healthfinder.gov in-cludes a section of online interactive resources (checklists, ques-tions and answers, etc.) that provide links to sites that assistconsumers in identifying depression, planning menus, or check-ing for physical activity levels. The Centers for Disease Control

Web Links — Page 6

http://www.Medicare.gov

http://www.samhsa.gov/public/look_frame.html

http://www.ahcpr.gov/consumer/surgery.htm

http://www.medicare.gov/MPPF/home.asp

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and Prevention (CDC) maintains a number of Web sites to sup-port public health campaigns, such as bone health for youngwomen (http://www.cdc.gov/powerfulbones), safe food handling(http://www.fightbac.org/main.cfm), and colorectal cancer screen-ing (http://www.cdc.gov/cancer/screenforlife/index.htm).

In some cases, behavior change is encouraged by onlinedocuments such as the Public Health Service’s consumerguide, “You Can Quit Smoking” (http://www.surgeongeneral.gov/tobacco/consquits.htm), or referral to a range of “How to Quit”resources maintained by the CDC (http://www.cdc.gov/tobacco/how2quit.htm). Fitness.gov—the Web site of the President’sCouncil on Physical Fitness and Sports—includes a numberof resources to help people of all ages exercise regularly.

Participating in the Policy Process

A few federal agencies explicitly use their Web sites to en-courage citizen participation. For example, the FDA’s homepage includes a“Let Us Hear From You” heading that has linksto pages encouraging consumers to report problems associ-ated with products regulated by the FDA, as well as a link toexplain how to comment on proposed regulations. Anotheragency—the Federal Trade Commission—encourages the pub-lic to submit consumer complaints, including allegations ofhealth fraud, through an online form (https://rn.ftc.gov/dod/wsolcq$.startup?Z_ORG_CODE=PU01). The information is en-tered into Consumer Sentinel, a secure database accessible tolaw enforcement agencies worldwide.

TARGET AUDIENCES

Federal health Web sites provide information to a varietyof audiences. Some are exclusively designed for consumers,while others include consumers as one of numerous audiences,including health professionals, researchers, the health indus-try, or health policymakers. Consumers are targeted either di-rectly by federal health Web sites or through intermediariesthat deal directly with consumers.

Most federal agency health Web sites have a heading on theirhome pages that indicates consumer information or materials.AHRQ’s Web site differentiates between “consumers” and “pa-tients” in its display, while the FDA uses the word “patients” asits home page entry-point. Many Web sites further segment theiraudiences by bundling information that is gender-specific(men’s health, women’s health), stage-of-life-specific (infants,kids, teens, seniors), role-specific (parents, caregivers), cul-turally or ethnically specific (minority, African-American,

Web Links — Page 7

http://www.cdc.gov/powerfulbones

http://www.fightbac.org/main.cfm

http://www.cdc.gov/cancer/screenforlife/index.htm

http://www.surgeongeneral.gov/tobacco/consquits.htm

http://www.cdc.gov/tobacco/how2quit.htm

https://rn.ftc.gov/dod/wsolcq$.startup?Z_ORG_CODE=PU01

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Asian–Pacific Islander), benefits-specific (Medicare beneficia-ries, Indian Health Service enrollees) or language-specific(Spanish, Asian languages). Other approaches to audience seg-mentation include information for those with a particular con-dition (e.g., cancer), those who are disabled, or those who travelto other countries.

In addition to targeting consumers directly, many Web sitesexplicitly try to reach intermediaries that ultimately interactwith consumers and patients. These include health profession-als of all kinds, the media, employers, educators, libraries, andstate and local programs. Many agencies also supply commer-cial health Web sites with federal health information they mayuse on their sites. Some agencies also link their Web site infor-mation to 1-800 call centers that might answer more specificconsumer questions and provide hard copies of publications.For example, Medicare’s site (http://www.medicare.gov) is linkedto the CMS call center 1-800-MEDICARE, while the NationalCancer Institute’s Web site (http://www.cancer.gov) providesLiveHelp, a program staffed by information specialists whocan answer questions received either by e-mail or by calls to1-800-4-CANCER.

MARKETING AND PROMOTION

Federal health Web sites use a variety of mechanisms to maketheir audiences aware of their information and services. Almostall of those interviewed mentioned their agencies’ use of printmaterials (e.g., newsletters and reports) and other public re-sources to promote their URLs. The issuance of media pressreleases and other press advisories to highlight agency Websites is widespread, with a particular focus on media that di-rectly reach consumers, such as Parade magazine and newspa-pers. In some cases, federal agencies purchase paid advertisingin consumer magazines; the National Women’s Health Infor-mation Center (http://www.4women.gov), for instance, has adver-tised in the Ladies Home Journal. CMS included the Medicare Website in paid advertising in a wide range of consumer magazinesduring the fall of 2001 and saw its usage increase dramatically.

Federal health Web sites are also promoted through sys-tematic contact with organizations such as voluntary healthorganizations (e.g., the American Cancer Society) that reachconsumers. Participation in conferences as presenters or ex-hibitors was also mentioned by several federal health Web siteofficials as an effective promotional tool, as was working withregional DHHS office staff who work with local and state agen-cies in their areas.

Web Links — Page 8

http://www.medicare.gov

http://www.cancer.gov

http://www.4women.gov

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Several health Web sites maintain electronic mailing listservices (listservs) that periodically e-mail information aboutchanges, updates, and other news about their sites to inter-ested individuals and organizations. Several have also trieddirect mail outreach to intermediaries who would be inter-ested in their sites. For example, AHRQ has sent informationto targeted opinion leaders, associations, and business groupsthat included information on their site. The Office on Women’sHealth sent a mailing that included a magnet imprinted withthe URL of the National Women’s Health Information CenterWeb site to over 80,000 nurse practitioners.

Finally, several Web site staff mentioned efforts to work withsearch engines to maximize their rankings in search engine re-sults. Becoming familiar with and then using the search engine’skeywords in manual submissions is one strategy used. Someagencies are also exploring the use of special software or otherservices to optimize submission to top search engines.

EVALUATION

All of the federal health Web sites reviewed and contactedmaintain periodic reports about usage on their sites, includ-ing metrics such as the number of hits, page views, visitor ses-sions, most and least requested pages, and most downloadedfiles. They also get information on how visitors get to theirsites, including data on the top referring sites and URLs. Thisinformation is indicative of how the site is used and can helpimanagers decide what information should be featured or hownavigation might be altered. Many sites also maintain a “Con-tact Us” function that allows users to send feedback that isreviewed by agency staff. In addition, several Web site ad-ministrators indicated that they conduct focus groups andusability testing to better understand user concerns and is-sues prior to posting information online.

Some agencies have conducted online surveys of users toevaluate site effectiveness. Using either a static survey that ap-pears in the navigation bar or a pop-up survey (or bounce-backform) that might appear at the beginning or end of a session forevery 20th user (for example), these surveys often allow greaterdetail about the demographics and views of Web site users. Forexample, questions on the Medicare Web site survey asked aboutthe usefulness and comprehensiveness of the information pro-vided, the length of time it took to find information, areas forimprovement, and user demographics. The NLM’sMEDLINEplus survey found that over 25% of the site’s userswere from other countries and that over half of users were ei-ther patients with a specific condition or their family or friends.

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Several of those interviewed mentioned the constraints theyface conducting user survey evaluation because the Office ofManagement and Budget (OMB) requires clearance on anysurvey activity. One interviewee mentioned an effort under-way by the Federal Consulting Group to receive generic OMBclearance on a Web site survey that could then be used by allfederal agencies. The survey, which is currently being testedby Firstgov, includes 18 questions on topics such as content,navigation, and performance using a 10-point scale.

KNOWLEDGE MANAGEMENT

Given the constantly evolving state of health informationand services, assuring that information available to the publicis accurate and up-to-date is a major task facing federal healthWeb sites. Many of the sites contain thousands of pages andlinks to hundreds of organizations, all of which must be main-tained. Federal Web site administrators use several strategiesin approaching this task.

Some agencies manage their Web sites content through aseries of internal clearance steps. The agencies or external con-tractors develop the content. That information is then reviewedand “cleared”at various levels, with ultimate sign-off by anindividual (or set of individuals) that may be located in thecommunications office or in some other department.

Other agencies have a validation process in which everypiece of content is reviewed on a regular basis (with timeframesranging from quarterly to annually, depending on the mate-rial). Some agencies mentioned that they are investigatingautomatic content management software but are often stymiedby its high cost. In some cases, sites include dates on theirweb pages so users know when it was last reviewed. Otherfederal Web sites rely on e-mail contacts from outside theagency to trigger a review of outdated materials. Several agen-cies also mentioned that they used automated link checkingservices to verify that links are still active.

Administrators of federal health Web sites that use infor-mation databases to support their Web sites, as opposed totext-based information, mentioned that the databases made iteasier to create knowledge management processes. For ex-ample, MEDLINEplus uses a system that electronically tracksevery change to the databases underlying the site, allowingmultiple and distributed reviewers (such as medical librar-ians nationwide) to work on the material, while still maintain-ing centralized oversight.

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THE FUTURE OF FEDERAL HEALTH WEB SITES

In talking about the future facing their federal health Websites, interviewees mentioned their priorities in the comingyears, as well as the challenges they face. Many spoke of newtypes of content or services under consideration—particularlycontent or services that were more customized, allowed trans-actions, or addressed particular population groups. Severalspoke of anticipated efforts to make their Web sites easier tonavigate.

Challenges included better integrating agency Web sitesto make them more consumer-friendly, addressing issues oflack of access and low literacy, financial constraints, and en-couraging strategic leadership about the central importanceof online health information in agency communication efforts.

New Content

Several interviewees mentioned new types of content un-der consideration on their sites. These included a possible “ask-an-expert” feature that would allow users to submit questionselectronically to an expert and receive an answer, more newscoverage, more local content about resources available in auser’s geographic area, and more content that might moreclearly influence user behavior. Several Web site managerswere considering greater use of commercially developed con-tent through licensing (for example a medical dictionary).

Several site officials mentioned translating content intoother languages as an area of future activity. Those whose Websites did not currently include Spanish content mentioned itsinclusion as their primary focus—particularly the ability tohave an interface that allowed users to see the information inboth English and Spanish, thereby allowing, for example, anEnglish-speaking health professional and a Spanish-speakingpatient to view the information together. Those who have al-ready developed Spanish-language content, such asMEDLINEplus, were investigating information translated intoother languages.

Administrators of portal health sites mentioned severalunique activities under consideration. The development oforiginal content in areas not covered by the sites they link towas one area. Incorporating a more evaluative approach tothe content accessed through the portal was another. This mightresult in the portal site’s developing and featuring a “top 10”list of sites delivering information on a particular topic, inaddition to providing access to all information on the topic.

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Increased Customization and Transaction Applications

Several interviewees discussed efforts to develop Web siteapproaches that felt more customized by the user. These in-cluded packaging information currently scattered throughoutthe sites into audience-specific information. As indicated above,many sites are already doing this through their segmentationby gender, stage of life, and other factors. Some site adminis-trators mentioned American Indians and Asian Americans astarget audiences under consideration.

The ability for users to interact and conduct transactionswith federal health Web sites was also mentioned by severalof those interviewed. These capabilities might allow a user toself-manage his or her own data, supplying, for instance, pre-ferred addresses for regularly scheduled mailings (perhaps awinter address and a summer address), the language in whichthe user would prefer to receive materials, or the types of in-formation that he or she would like to receive. Another inter-viewee mentioned a government-wide future that might al-low an individual to enter a new address once into the systemand have it shared across government agencies. While manyof the transactional activities under federal agency consider-ation do not necessarily apply to consumer publics (for ex-ample, grants management and regulatory activities), onlineordering of health publications was mentioned by severalagency officials as one that does. Depending on the type oftransaction conducted, issues of authentication (you are whoyou say you are) will need to be addressed. Finally, the abilityto more directly interact with users through proactive elec-tronic outreach was also mentioned. Sending out e-mails that“remind” a user about a health promotion topic was one ex-ample cited.

Improving Navigation

Increasing federal Web site’s navigational aids and strate-gies that help users find what they need were mentioned byseveral interviewees as a future priority. As one intervieweenoted, this involved “cutting out steps and irrelevant infor-mation” for the user by gathering user information up frontand then delivering only that information that is relevant. Anexample would be learning early in the interaction with aMedicare Web site user that he had end stage renal diseaseand therefore would not be eligible to enroll in a MedicareHMO. Having search results that include only the benefits auser is eligible for—including those that they may not havethought of—increases the value of the service.

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Interviewees also mentioned upgrading the sophisticationof Web site search engines as a future priority. One intervieweeframed search engine planning efforts by saying, “Here’s myneed—bring me the information that addresses my need.” Sev-eral people mentioned development of a thesaurus that allowsusers to plug in multiple words to find the same information.

Many interviewees mentioned the need for greater testingof their sites’ actual usability. While many agencies had usedfocus groups in the development of their sites, and had con-ducted usability testing, additional work in this area was citedas a future priority.

CHALLENGES AHEAD

Making Web Sites More Consumer-Friendly

The need for federal Web sites to be better integrated, bothfrom a navigational and visual perspective and from a contentperspective, was mentioned by many of those interviewed. Mostfederal health agencies comprise multiple divisions, bureaus,centers or institutes—each of which conducts a unique set ofactivities often targeting a discrete set of audiences. In manycases, Web site activities grew from the “bottom up” throughagency subunits—with different approaches used to provideinformation for various publics. This “stovepipe” approach, asseveral interviewees termed it, can be difficult for online usersto navigate—as information may be hard to find or redundant,and navigation protocols may be radically different within asite. However, the organizational visibility and prestige associ-ated with producing online information often makes it difficultfor agency subunits to change. As one interviewee noted, “Weneed more champions for the citizen than for the organization.”

A second result of the way federal health Web sites haveevolved over time is that, in many cases, consumers or pa-tients were not originally intended as the audience for theagency’s information and thus much of the material gener-ated was not written for consumers. Many health Web sitemanagers were then surprised when they started looking atwho was using their sites and found that consumers and pa-tients had become a large “unintended” audience. Whilemany agencies have adapted and begun to provide consum-ers with information, this has not been an easy task and re-mains an ongoing challenge. As one interviewee noted, “Con-verting information for consumers that wasn’t originally in-tended for them is not easy.”

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A final issue raised by health Web site managers was thetension between a future driven by new information technol-ogy (IT) and one driven by an ongoing assessment of users’needs. According to those interviewed, an IT-driven focus istoo often dominant. As one interviewee noted, “most librar-ians know that you need to turn off all of the graphics andflash.” This “technological seduction” in the words of anotherinterviewee can lead to frustrated or turned-off users. “Justbecause you can provide a new technology doesn’t mean youshould,” said another interviewee. Helping IT departmentsunderstand the needs of agency audiences and then using tech-nology to support those needs is a major challenge.

Lack of Access and Low Literacy

Increased reliance on the Internet as a key communicationsvehicle will raise issues about access to that information. Sev-eral interviewees noted that many in this country do not haveeasy access to computers or to the Internet. The extent to whichfederal health information and resources are primarily avail-able through the Internet could be problematic for the mil-lions who do not have access.

In addition, the issues of low literacy, which have begun tobe generally addressed by consumer health information expertsand advocates, also apply when providing information throughthe Internet. Some Web sites are beginning to address these is-sues by working with materials that use more visual imagesand simpler terms. MEDLINEplus provides over 50 interactivehealth education tutorials using animated graphics and easy-to-read language (http://www.nlm.nih.gov/medlineplus/tutorial.html). AHRQ produced a simple publication titled WaysYou Can Help Your Family Prevent Medical Errors that also usespictures and simple statements (http://www.ahrq.gov/consumer/5tipseng/5tips.htm).

Resources

All of those interviewed were concerned about the abilityto receive financial resources to maintain or continue to im-prove their federal health Web sites. While Web site activitiesare often viewed by budget staff as less costly than other formsof communications (print, events, etc.), one interviewee feltthat her agency’s Web site actually increased the demand forproducts and services by making them visible to a wider au-dience. The ability to quickly incorporate newly emergingtechnologies, to regularly conduct evaluations, and to act onthe findings all cost money in an era of tight budgets. What

Web Links — Page 14

http://www.nlm.nih.gov/medlineplus/tutorial.html

http://www.ahrq.gov/consumer/5tipseng/5tips.htm

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may result from limited funding is “Web site stagnation” inthe words of one of those interviewed, which in the fast-pacedever-changing Internet world, could sideline the site as a re-source.

A second expressed concern is the lack of staffing exper-tise needed to produce high-quality, consumer-oriented healthinformation. Converting nonconsumer information or gener-ating new content for consumers takes special skills not tradi-tionally resident in federal health agency staff. While “home-grown” staff expertise has developed over time and sometraining has been provided, this remained a challenge men-tioned by some federal health agencies.

Strategic Vision and Leadership

The last challenge noted in the interviews was the need forfederal leadership and vision about the importance of theInternet as a major communication vehicle for reaching con-sumer and patient audiences now and in the future. Recog-nizing that online health information has generally evolvedpiecemeal since the mid-1990s, the time is now, in the view ofmany of those interviewed, for more critically examining therole of online health information in the context of overall agencygoals. As one interviewee noted, “We need a strategic visionof what we want to accomplish versus having a conglomera-tion of sites.” It also may mean elevating the importance of aWeb presence from a “novelty” to a “mission critical” compo-nent of federal health agencies.

As one interviewee noted, this strategic thinking occurs inthe context of broader changes in the health landscape—bothin terms of the increased interest in and necessity for consum-ers to play a larger role in their own health care decisions andin the dizzying pace of technological change. As a result ofeconomic shifts, education advances, media coverage, andother factors, citizens are willingly and, in some cases, unwill-ingly expected to be better health care consumers. Their needfor publicly available, accurate, updated, accessible informa-tion will be great.

At the same time, the rapid pace of technological changeoffers the opportunity to think about using the Internet in newways to provide health information and services to the publiceither directly or through intermediaries. New applicationsthat focus on health behavior change, more customized deci-sion support, health performance measurement, or other typesof “e-health” activities could represent a next generation offederal online health activity. Certainly, consideration of the

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accompanying risks, such as privacy, security, and politicaltrade-offs, as well as the more fundamental discussion aboutthe relative roles of the government and the private sector insome of these activities, would also need to occur. With lead-ership and vision, however, a meaningful discussion couldtake place within and across federal health agencies about theanswer to the question posed by one of those interviewed:“What do we really need to do to improve health using thistechnology?”

The author thanks Elyse Pegler and Michele Black for their help withediting and formatting. Work on the report was sponsored by the HealthInsurance Reform Project based at the George Washington Univer-sity and supported by the Robert Wood Johnson Foundation.

REFERENCES1 Department of Commerce, A Nation Online: How Americans Are Expanding Their Use of

the Internet, National Telecommunications and Information Administration and Econom-ics and Statistics Administration, Department of Commerce, Washington, D.C., 2002.

2 Humphrey Taylor, “Cyberchondriacs Update,” No. 21, The Harris Poll, Rochester,N.Y., May 1, 2002; accessed August 11, 2002, at http://www.harrisinteractive.com/harris_poll/index.asp?PID=299.

3 Susannah Fox and Lee Rainie, “Vital Decisions: How Internet Users Decide WhatInformation to Trust When They or Their Loved Ones are Sick,” Pew Internet & AmericanLife Project, Washington, D.C.; accessed August 8, 2002, at http://www.pewinternet.org.

4 Commerce, “Nation Online.”

5 Kaiser Family Foundation, “Generation Rx.com: How Young People Use the Internetfor Health Information,” Kaiser Family Foundation, Menlo Park, California, 2001; ac-cessed August 11, 2002, at http://www.kff.org/content/2001/20011211a/.

6 Elena Larsen and Lee Rainie, “The Rise of the E-Citizen: How People Use GovernmentAgencies’ Web Sites,” Pew Internet and American Life Project, Washington, D.C., 2002;accessed August 7, 2002, at http://www.pewinternet.org/reports/index.asp.

Web Links — References

http://www.harrisinteractive.com/harris_poll/index.asp?PID=299

http://www.pewinternet.org

http://www.kff.org/content/2001/20011211a/

http://www.pewinternet.org/reports/index.asp

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APPENDIX I:FEDERAL AGENCIES INTERVIEWED

Agency for Health Care Research and Quality (AHRQ)

Centers for Disease Control and Prevention (CDC)

Centers for Medicare and Medicaid (CMS)

Department of Health and Human Services (DHHS)

Food and Drug Administration (FDA)

General Services Administration (GSA)

Health Resources and Services Administration (HRSA)

Indian Health Service (IHS)

National Institutes of Health (NIH)

National Library of Medicine (NLM)

Office of Disease Prevention and Health Promotion (ODPHP)

Substance Abuse and Mental Health Services Administration(SAMHSA)