The Committee initiated its review of the government's outreach programs-all efforts to educate veterans and the public about Gulf War veterans' illnesses and the health care and disability benefits available to veterans-with four key questions:
For this interim report, we evaluated how DOD and VA use several communications tools and the clarity of their message. The IOM also has reviewed outreach to Gulf War veterans ( 6 ). In 1995, IOM recommended "VA improve publicity regarding the existence of the Persian Gulf Health Registry, and encourage all concerned PGW veterans to be registered." Subsequently, VA expanded its outreach campaign to include a toll-free number, which was established in February 1995. We make additional findings and recommendations about VA's and DOD's outreach in this chapter.
For active duty forces-including sailors deployed at sea and soldiers stationed in foreign countries-even common news and information can be difficult to access. For veterans, like all Americans, the communication difficulties lie in cutting through the information filters of a diverse and dispersed populace. The challenge to DOD and VA is to formulate methods of communication that will effectively reach their unique audiences. The Committee has assessed their adherence to basic public health outreach principles, i.e., educating and referring the target population through efficient methods of communication.
DOD and VA also face bureaucratic challenges. With large organizations, effective communication with clients requires careful coordination among bureaus or divisions with disparate responsibilities. Intra- and interdepartmental coordination is critical to clarity of message and to marshalling resources and expertise. The Committee has assessed the effectiveness of existing coordination efforts and considered possibilities for enhancement.
To date, the federal government has used three toll-free numbers to reach Gulf War veterans, one operated by VA and two by DOD.
DOD Persian Gulf Medical Registry Hotline (Hotline) (1-800-796-9699). The Office of the Assistant Secretary of Defense (Health Affairs) established DOD's toll-free Hotline on June 23, 1994. The Hotline's primary function is referring eligible persons to medical treatment facilities to participate in DOD's Comprehensive Clinical Evaluation Program (CCEP). Operators do not answer clinical questions; they inform callers (approximately 30,000 to date) that questions will be answered during the CCEP evaluation process.
Operators work with a script to register eligible callers and family members. Once registered, callers may receive a referral to a medical treatment facility if desired. The operators use a specially designed database to locate the medical treatment facility nearest a caller, who is notified to expect contact from the facility within two weeks. The computer system transmits caller data to the treatment facility along with verification of eligibility for evaluation.* Callers eligible for medical coverage from VA, but not DOD, are referred to VA's Helpline. Callers receive a letter confirming the registration and/or referral.
Callers can request placement in DOD's database without seeking medical evaluation. These requests can occur when an individual who is not sick nevertheless wants his or her name in the registry in the event of future illness. Some callers are not eligible or have family members who are not eligible for access to DOD medical facilities, but ask to register in the event that access rules change.
DOD has collected data on the number of callers requesting referral who have not been contacted in the two-week period and have called the hotline for referral. Overall, 17 percent of CCEP participants had to be referred a second time, but in the past few months the rate has declined to less than 10 percent. This improvement reflects some decentralization in the referral process and could indicate personnel in the medical treatment facilities are becoming more familiar with the Hotline referral process.
DOD intramural coordination among Health Affairs, Public Affairs, and the American Forces Information Service (AFIS) played an important role in the promotion of the Medical Registry Hotline. The Hotline was conceived by Health Affairs, publicized to the press and media through Public Affairs, and communicated to the service members through AFIS.
VA Persian Gulf Helpline (Helpline) (1-800-PGW-VETS). VA established its toll-free Helpline on February 2, 1995. VA's Helpline serves as a point of information dissemination, not as a point of entry into the Persian Gulf Health Registry.**Operators are supposed to refer callers requesting an examination to a point of contact at the VA medical treatment facility nearest them. As of November 1995, the Helpline had received over 115,000 calls. Call volume data suggest the Helpline number has been effectively communicated to the public.
The initial contact on the Helpline is the automated voice mail service. The auto-attendant offers a range of information about benefits and services, medical benefits, and disability compensation. Recorded instructions prompt callers to access different parts of the voice mail script. Live operators can be accessed at various points, most notably when the caller requests forms or other information not in the recorded script. Direct access to an operator also is available if the caller does not have a touch tone telephone. The auto-attendant records messages after normal business hours, and the operators process the appropriate responses on the next working day. Callers who request information about any particular subject from the auto-attendant receive an information package containing the following items: Persian Gulf Review newsletter; question and answer pamphlet on Gulf War veterans' illnesses; ongoing research pamphlets; available medical care program pamphlet; disability compensation form; and Persian Gulf Illness fact sheets.
Intramural coordination between VA's Veterans Health Administration (VHA) and Veterans Benefits Administration (VBA) played an integral part in establishing the Helpline. The Veterans Assistance Service, a component of VBA with expertise in operating phone systems and hot-lines, worked with VHA clinicians to create the auto-attendant script for the Helpline and to train the operators, who are contractors. The Helpline operates on a joint VBA-VHA budget. Ongoing consultation between the administrations assures the script is current and accurate.
DOD Incident Reporting Line (1-800-472-6719). DOD's Incident Reporting Line, a toll-free line, began operating May 30, 1995. Operators record details of incidents in the Kuwaiti Theater of Operations that callers believe could have led to illnesses suffered by any Gulf War veteran. DOD also encourages physicians to call when they believe they have medical information about the causes of health problems suffered by Gulf War veterans. The line is staffed by the same operators who staff the Persian Gulf Medical Registry Hotline, but they use a different database that allows them to categorize an incident as well as write a brief descriptive narrative (1,000 characters or less). Each caller receives a letter confirming the incident report. All recorded information is sent to the Persian Gulf Investigation Team (PGIT) in Washington, DC, which follows these leads for DOD (see Chapter 5). Over 1,000 incidents have been reported to date.
The Incident Reporting Line has been publicized through the same media as the Hotline. DOD also placed the telephone number of the Incident Reporting Line on the leave and earnings statements received by active duty, National Guard, and Reserve members for a three-month period beginning in September 1995.
Increasingly, the government, corporations, and individuals take advantage of the Internet and World Wide Web (Web) as a method of information outreach. DOD and VA utilize on-line services to disseminate information to Gulf War veterans. Several privately-developed Web sites devoted to Gulf War veterans can be found by browsing the Web. Though many service members and veterans do not have access to a computer to retrieve this type of information, Internet resources do serve the public at large and undoubtedly reach some service members and veterans.
DOD GulfLINK ( http://www.dtic.dla.mil/gulflink/ ). DOD has a broad-based Web site, DefenseLINK, and in August 1995 opened the Web site GulfLINK, which is devoted to Gulf War issues. GulfLINK provides users access to a variety of topics, including reports on Gulf War veterans' illnesses, recently declassified Gulf War documents, fact sheets, press releases, bibliographies, speeches, and other special features. There is also a home page for the Assistant Secretary of Defense (Health Affairs), which includes a section devoted to Gulf War veterans' illnesses. The Internet site address recently was listed on September through November 1995 military leave and earnings statements.
GulfLINK provides education and information services in a user friendly medium and has been publicized through press releases and news conferences. As of January 1996, there have been more than 98,000 accesses to GulfLINK.
Also as of January 1996, GulfLINK contained more than 10,000 pages of recently declassified intelligence documents. DOD provides no criteria for assessing the reliability of many declassified documents posted on GulfLINK, particularly Intelligence Information Reports (IIRs) containing raw human-intelligence information from the field. The GulfLINK home page merely notes that "IIRs are not finally evaluated intelligence. Reports are from all types of sources which have not been assessed for reliability or veracity." In briefings for Committee staff, the Defense Intelligence Agency (DIA) questioned the accuracy of many of its own field intelligence reports posted on GulfLINK, particularly more than a dozen IIRs reporting the deployment of Iraqi chemical munitions to the Gulf War theater. DIA explained the reports in question lacked sufficient corroboration or were otherwise implausible.
VA On-line (1-800-US1-VETS) and VA Web Page ( http://www.va.gov/health/environ/persgulf.htm ). VA On-line, a computer bulletin board for personal computer users, provides the same information offered by the voice mail of the Helpline in a text format. Users can download information from the bulletin board. The service appears to be utilized heavily, with close to 128,000 accesses and nearly 66,000 downloads of information since its inception in February 1995.
Like DOD, VA also has a Web home page. Usage has increased steadily during the last year, to nearly 30,000 accesses per week. In December 1995, VA added a "Persian Gulf Veterans' Illnesses" page to its main home page. This site offers information on the Persian Gulf Veteran's Health Registry, National Health Survey, research initiatives, and telephone numbers to VA's Helpline and DOD's Hotline.
Print media-via targeted efforts or mass mailings-also offer DOD and VA opportunities for outreach to Gulf War veterans.
Leave and Earnings Statements. DOD publicizes programs for service members through biweekly or monthly leave and earnings statements. As mentioned earlier for example, DOD placed the Incident Reporting Line toll-free number on the leave and earnings statements issued in September 1995. A spike in call volume in the third week of September-a 138 percent increase over the previous week-suggests this is an effective outreach tool. The CCEP Management Team is in the process of placing the Hotline number on leave and earnings statements.
Newsletters and Memos. VA policy calls for sending all members of its Health Registry a quarterly newsletter entitled Persian Gulf Review. This publication contains information about current research efforts, treatment protocol updates, report releases, and any other items about which VA feels Gulf War veterans should know. VA also highlights its toll-free number on pamphlets at VA medical centers.
In the past, Secretary of Defense Perry and Secretary of Veterans Affairs Brown have sent out signed memoranda detailing changes and updates in policies concerning Gulf War veterans. Confusion exists, however, about who received the May 1994 memorandum from Secretary Perry (and Chairman Shalikashvili) informing Gulf War veterans of the availability of DOD and VA medical evaluations for Gulf War veterans experiencing health problems. Some Gulf War veterans (including those on Committee staff) have informed the Committee that they never received the memorandum. DOD states it was sent to approximately 110,000 separated veterans who would not receive that information through active duty channels. Slightly more than 18,000 were undeliverable. A second mailing in October 1994 was sent to nearly 24,000 separated veterans and about 7,500 were undeliverable. DOD reports that since active duty personnel "have access to chain of command message traffic and other forms of ongoing communication" the intent was to reach only separated veterans.
Public Service Announcements (PSAs). During 1995, VA distributed a PSA publicizing the Helpline, VA medical and compensation benefits, and symptoms experience by some Gulf War veterans. The cumulative circulation of the newspapers carrying the article was over 3 million, but there is no method of determining how many Gulf War veterans saw this PSA. VA has no means of tracking every newspaper publication of the PSA, thus no correlation can be made to Helpline usage or entry into its Health Registry.
On August 27, 1995, Parade magazine prepared and published a PSA explaining the predominant symptoms experienced by Gulf War veterans and printing DOD's Hotline and Incident Reporting Line and VA's Helpline telephone numbers. The call volume data from the following week show no significant increase in calls to either number.
Both DOD and VA have used radio and television in their outreach to Gulf War veterans.
DOD-AFIS/AFRTS. AFIS, DOD's internal information service, offers news, sports, and entertainment programming to service members worldwide. The Armed Forces Radio and Television Service (AFRTS), the broadcast service of AFIS, delivers radio and television programs-including many of the same programs seen on commercial television in the United States-to one million service members overseas and aboard ships at sea. AFRTS distributes programming to these sites by satellite and mail-delivered video and audio tape. Through its Print Media Directorate, AFIS oversees the European and Pacific editions of the Stars and Stripes newspapers and exercises editorial control over the 1,100 military funded DOD newspapers in the U.S. and around the world. DOD has consolidated all public affairs, broadcasting, photo sciences, equipment maintenance, and audiovisual training under AFIS. AFIS appears to have substantial leverage in providing outreach to service members worldwide.
VA Public Service Announcements (PSAs). VA broadcasts PSAs over public and private stations to publicize the Helpline, which is the department's primary outreach effort to Gulf War veterans. VA's target audience is quite broad, and PSAs can reach millions of people. Data on how many Gulf War veterans actually see or hear them are unavailable. Viewership estimates exist, but radio and TV stations do not always report when and if they have aired or published the spots.
The Committee reviewed several VA PSAs. None mentions illness or any specific reason to call the Helpline. The PSAs fail to use any of the terms most familiar to the public or to veterans to convey their message.
Communication through outreach programs plays an essential role in health promotion. It is challenging to convey health information about illnesses for which causes are uncertain, controversial, and subject to change with new findings. Certainly some of the health problems affecting some Gulf War veterans fall into this category. With so many clinical and administrative issues involved in treating these veterans, outreach to them and their families must be clear and accurate.
As the Committee received public comment from Gulf War veterans and other interested parties over the past months, we heard several times that the term "priority care" associated with the VA health care system is misleading to some Gulf War veterans. Many believe they have "head of the line" privileges over others when receiving medical care. VA, which uses the term because it was included in statutory language, states "priority care" in this context actually means VA is required to treat the veteran's illness, despite a lack of any indication that it was the result of Gulf War service, unless the examining physician determines that it is from a cause that is not related to service in the Gulf.
**Veterans of the Gulf War, but not their spouses or dependents, are eligible for the Persian Gulf Health Registry.