7
Use to Improve Clinical Care
PL 112-260 required the Department of Veterans Affairs (VA) to develop a registry that could “ascertain and monitor the health effects…” of those veterans who were exposed to airborne hazards and burn pits during their deployments to Southwest Asia. VA states that the Airborne Hazards & Open Burn Pit (AH&OBP) Registry is intended to support scientific study and clinical investigation that can be translated into clinical practice to address service members’ and veterans’ health concerns regarding deployment-related exposures and to improve treatment programs (VA, 2019) as well as to “improve VA and [Department of Defense] research efforts, claims, and clinical care” (VA, 2020a, slide 11). In this chapter the committee turns its attention to whether the registry does or could be used to improve clinical care services provided to service members and veterans by the Department of Defense (DoD) or VA or in the community.
The committee proposes three ways by which exposure registries such as AH&OBP Registry might contribute to clinical care:
- By providing registry participants with access to basic and specialized longitudinal health care services designed to address their exposure concerns, including access to clinical subject-matter experts;
- By providing clinicians with relevant information about the range and frequency of health conditions reported by registry participants, including uncommon health conditions such as constrictive bronchiolitis and interstitial lung disease, as well as relatively common conditions such as obstructive sleep apnea; and
- By providing clinicians with information about a service member’s or veteran’s health and self-reported exposure history.
This chapter begins with a brief description of those veterans who are eligible for VA health care, followed by a consideration of how the AH&OBP Registry is currently used by veterans to access that health care and then a discussion of how the registry might be leveraged by clinicians to improve care for eligible veterans. The role of the Airborne Hazards and Burn Pits Center of Excellence (AHBPCE) in improving veterans’ health care through its use of registry information is also examined. Although most exposure registries do not facilitate a participant’s access to or use of health care, the committee describes other approaches, such as the World Trade Center’s Treatment Referral Program, that assist people who have been exposed to airborne hazards in accessing health care.
OVERVIEW OF VA HEALTH CARE
VA, through the Veterans Health Administration (VHA), manages the largest integrated health care system in the United States. VHA provides services for health promotion and disease prevention, primary care, ambulatory medical–surgical specialty care, mental health and substance use disorder care, women’s health and maternity care, physical medicine and rehabilitation, hospital care services, pharmacy, residential rehabilitation programs, home care, extended care, and homeless support services (VA, 2021a). VA estimates that as of 2022, of the more than 19.1 million living U.S. veterans, less than half (9.26 million veterans) were enrolled in VHA (VA, 2022a) and that in fiscal year (FY) 2020, almost 6.8 million individual veterans received care in VHA (VA, 2021b). Veterans who served in the U.S. Armed Forces after September 11, 2001, make up the largest cohort of VHA users (see Table 7-1).
Whether a veteran can receive VA health care services depends on his or her eligibility to enroll in VHA. Veterans who were active-duty service members, who are separated from the military, and did not receive a dishonorable discharge may qualify to enroll for VA health care benefits and receive the uniform benefits package (VA, 2021c). Eligibility for VA health care benefits is determined by qualifying for one of eight priority groups categorized on the basis of financial need, period of service, service-connected disability, being a Medal of Honor recipient, and income level (VA, 2021c).
Based on available resources, the secretary of VA decides annually which priority groups are eligible to enroll in VHA. Veterans with service-connected disabilities receive the highest priority, and veterans who have a higher income and who do not have a service-connected disability that qualifies them for disability compensation receive the lowest priority. Veterans who served in a theater of combat operations after November 11, 1998, are eligible for priority group 6, and thus VHA enrollment, for 5 years after discharge from military service, although with the passage of PL 117-168, the Sergeant First Class Heath Robinson Honoring our Promise to Address Comprehensive Toxics (PACT) Act of 2022, the eligibility for VHA enrollment has been extended to 10 years. At the end of this enhanced enrollment period, the veteran is assigned to the highest priority group for which he or she qualifies at that time. Reserve or National Guard members on active duty for training purposes only do not meet the basic eligibility requirement (VA, 2021c).
Unlike veterans with exposures to ionizing radiation, Project Shipboard Hazard and Defense, Camp Lejeune contaminated water, or Agent Orange—all of whom qualify for priority group 6 (VA, 2021c)—VA does not have special eligibility for veterans who were exposed to airborne hazards and open burn pits while serving in the Southwest Asia theater, although this may change with the passage of PL 117-168. Therefore, at present, if a veteran does not fit into one of the priority groups 1–6 for other reasons, he or she may not have access to VHA health care.
USE OF THE AH&OBP REGISTRY TO IMPROVE HEALTH CARE
The committee considered whether the AH&OBP Registry is an opportunity for VA to engage with veterans concerned about their deployment exposures and post-deployment health. Could the registry serve as an entry point for eligible veterans to enroll in VHA if they have not already done so, and for veterans who are already using VHA, would it encourage them to discuss their exposure and health concerns with their VA health care providers?
The committee also examined whether the registry is or could be used to improve both individual and population health by facilitating access to and use of health care and whether VA clinicians use information from the registry to optimize care for veterans. For example, would a clinician access a registry participant’s questionnaire
TABLE 7-1 Number of Veterans and Veterans Health Administration Users by Era, 2010–2019
| Era | Total Veterans | Veteran VHA Users |
|---|---|---|
| 1990–1991 Gulf War | 621,901 | 268,242 |
| Post-9/11 | 2,935,150 | 1,060,178 |
NOTE: VHA user is defined as veterans who accessed Veterans Health Administration services between January 1, 2010, and December 31, 2019.
SOURCE: VA, 2021b.
responses to identify the hazardous exposures he or she had reported and then use that information to elicit more details about those exposures during a clinical interview and health evaluation? Would any additional interview information be included in the veteran’s electronic health record or be used to update the participant’s questionnaire responses?
Prior to conducting an in-depth assessment to answer those questions, the committee decided that it was important to determine whether other exposure registries performed similar functions and if there were any that might be viewed as exemplars of how a registry might improve access to clinical care. One such registry, the World Trade Center Health Registry (WTCHR) (discussed in detail in Chapter 4) does work with its participants to improve their access to clinical care and identify unmet health care needs. Specifics of that work are discussed in the next section, followed by a consideration of how the AH&OBP Registry operates with regard to improving health care.
The World Trade Center Health Registry
The ability of an exposure registry such as WTCHR to identify exposed people with unmet health care needs and to connect them to care and resources is an important function. Part of WTCHR’s mission is to respond to enrollees’ health concerns and refer enrollees to the WTC Health Program (WTCHR, 2019). To fulfill that mission, WTCHR makes an effort to share research findings from its surveys with medical providers that serve the 9/11-exposed population and to identify and refer participants with unmet health care needs to a variety of services (see Chapter 4). Because the registry itself does not provide health care services, these outreach and referral capabilities require a close working relationship with the New York City Department of Health and Mental Hygiene and the World Trade Center Health Program (Farfel et al., 2021).
Specifically, the WTCHR Treatment Referral Program uses the registry to contact exposed individuals to determine if they are being treated for any of several health conditions and, if not, asks whether they would like to receive a referral to a clinician. For example, the Treatment Referral Program identified 22,981 survey respondents with respiratory conditions or probable posttraumatic stress disorder (PTSD). Of them, the Treatment Referral Program vendor reached 8,778 registry enrollees. The Treatment Referral Program staff then spoke with 6,016 of those enrollees and used motivational interviewing techniques to reduce barriers to care and encourage respondents to enroll in the World Trade Center Health Program to access health care services; 2,425 registry enrollees applied to the health program. Staff assisted enrollees with the application process, helped them document their eligibility using self-reported exposure information from the survey, assisted registrants in making the clinical appointments, and conducted follow-up interviews. Treatment Referral Program staff found that among registry participants those who had PTSD and those who were non-White or had lower incomes were less likely to access the specialized health care services available to registry enrollees (Petrsoric et al., 2018). Outreach and engagement increased the likelihood of retention and participation in future surveys and the long-term success of WTCHR (Petrsoric et al., 2018). Other WTCHR outreach interventions for participants have encouraged smoking cessation and emergency preparedness (Farfel et al., 2021).
WTCHR staff have also created and disseminated clinical guidelines for health care providers who treat adults or children exposed to the World Trade Center disaster (NYC DHMH, 2021). Although the Treatment Referral Program does not provide clinicians with information about any individual participant’s exposures, the program does prepare educational materials to aid clinicians in treating and managing trauma-exposed individuals. This program component is designed to improve the quality of care of WTCHR participants and other individuals exposed to the 9/11 disaster (Concannon et al., 2021).
WTCHR is an example of how an exposure registry can be integrated into a larger health program (i.e., the World Trade Center Health Program and the New York City Department of Health) to connect registry participants to resources and health care. However, the success of the WTCHR Treatment Referral Program depends on its having had adequate resources, including trained staff and sustained funding, that have been dedicated by Congress. The WTCHR Treatment Referral Program is also good example of a proactive program that encourages and facilitates registry participants’ access to health care.
The AH&OBP Registry and VA Health Care
As of November 2021, slightly more than 75% of the 243,331 AH&OBP Registry participants had at least one VA health care visit between 1992 and 2021. VA stated that about 14% of registry participants are on active duty and would receive care at a DoD medical facility and not a VA medical facility (VA, 2021d).
The committee attempted to answer the question of whether participating in the AH&OBP Registry was associated with participants’ use of VA health care. Due to limitations in the committee’s dataset, the analyses were restricted to veterans who completed the registry questionnaire as of December 31, 2020, to examine their VA health care use in the calendar year after they participated. To be consistent with other VHA use analyses, these analyses were restricted to participants with eligible deployments after September 11, 2001; the metric reported is percent of participants using VA health care between 2001–2021. Similar information for a comparison group of veterans who did not participate in the registry was not available and therefore could not be analyzed. Three flags were constructed for each participant to indicate whether they used VA health care in the calendar year prior to, the same calendar year as, or the calendar year after the year in which they completed the registry questionnaire.
The committee’s dataset indicates that among all veterans participating in the registry, the number using VA health care increased in the year of and the year after registry participation. Among those who had not used VHA in the year prior to completing the questionnaire, 26% of them used VHA in the year of questionnaire completion and almost 35% of them used VHA in the year after completing the questionnaire (see Table 7-2). Among those who were already using VHA in the year prior to completing the questionnaire, the analysis showed that VHA use dropped slightly in the year of completion (88%) and the year after completion (85%), indicating that participation in the registry was not positively associated with increased or continued use of VA health care. The committee cautions that there are caveats to these findings and that the analyses cannot be used to infer a causal relationship between registry participation and access to or use of VA health care. For example, if a participant had used VHA once prior to joining the registry and then used VHA three times in the year after joining, it cannot necessarily be concluded that registry participation either encouraged the participant to use VHA care or was responsible for increased use. There may be other unrecognized factors that account for the increased use of VA health care (e.g., health or economic status, geographic factors).
As of June 2021, VA reports that it does not track whether registry participants who are not already enrolled in the VA health care system may subsequently enroll after completing either the registry questionnaire or the health evaluation (VA, 2021k). Thus it is difficult to determine whether registry participation encourages the use of or enrollment in VA health care services for eligible veterans. The committee’s dataset shows that most registry participants—and those who use VHA in particular—report having four to six of the health outcomes included in the questionnaire (data not shown). Table 3-4 in Chapter 3 shows that most registry participants report having three to five of the health outcomes in the questionnaire, but the table is not stratified by VHA use.
| Year of VHA Use | All Registry Participants Who Have a VHA Health Record (n = 208,854) (%) |
Participants Not Using VHA in the Year Prior to Registry (n = 133,329) (%) |
Participants Using VHA in the Year Prior to Registry (n = 75,525) (%) |
|---|---|---|---|
| Year prior to registry completion | 36.2 | 0.0 | 100.0 |
| Year of registry completion | 48.7 | 26.4 | 88.0 |
| Year after registry completion | 52.8 | 34.6 | 85.0 |
The AH&OBP Registry Health Evaluation
There are approximately 3.7 million service members and veterans who are eligible to participate in the AH&OBP Registry. Registry participants may request an optional health evaluation1 with a VA clinician free of charge once they complete and submit the self-assessment questionnaire.
VA estimated that approximately 200,000 (10%) of the more than 2 million service members who deployed since September 11, 2001, would request an in-person health evaluation through the registry over a multiyear period (Lezama, 2016). VA stated that one consequence of high registry participation is increased demand for the registry health evaluation (VA, 2022b). As of February 1, 2022, the committee’s dataset indicated that there were 278,645 participants who had completed the registry questionnaire, of whom approximately 50% had expressed an interest in receiving a health evaluation and 30,049 (11%) of whom had received a health evaluation. In addition, almost 5% of those who had not expressed an interest in an evaluation had also received one. VA indicates that although the number of service members and veterans who have received a health evaluation has improved, it still is not sufficient and the insufficient numbers may be due to some facilities lacking the resources to conduct the health evaluations (VA, 2022c).
Although efforts are being made to improve the number of health evaluations that are performed, there are a number of reasons that may hamper substantial improvements in the near future. The director of Health Outcomes Military Exposures (HOME) reported to the VA Office of Inspector General (OIG) review team (which conducted its review in late 2021 to early 2022) that COVID may have reduced the number of health evaluations that could be conducted if facilities deferred evaluations “because they did not want veterans going to the facility unless necessary” (p. 13), and some staff may have been detailed to COVID-related duties (VA OIG, 2022). The OIG review team also found that veterans had been told by staff at some medical facilities that the facility did not perform the registry health evaluations. Other reasons for the low number of health evaluations included data inaccuracies in the evaluation process such as veterans being assigned to the wrong or no medical facility based on the Zip code they provided on the questionnaire (VA OIG found that “over 14,200 veterans were not assigned to facilities for exams due to zip code errors” [p. 10]), and outdated contact information for the environmental health coordinator at an assigned VA medical facility (VA OIG, 2022). HOME indicated to VA OIG that although it and the environmental health coordinators do not track veterans who ask to schedule a health evaluation, nor document any scheduling attempts, HOME was considering implementing a tracking system for when veterans call in but such a system would not capture veterans who were already participating in the registry (VA OIG, 2022).
VA has found it challenging to strike a balance between encouraging participation in the AH&OBP Registry and having the capacity to perform the requested evaluations. Therefore, based on previous annual requests, VA has established a minimum threshold of 40,000 new registry participants per year to accommodate the anticipated requests for health evaluations; this threshold is expected to be reevaluated every 2–3 years; however, as shown in Table 7-3, with the exceptions of 2016 and 2021, enrollment in the registry has not exceeded this number. Should registry enrollment fall below this number, active recruitment into the registry would occur (VA, 2022d).
The committee recommends that in order for the registry to fulfill its stated purpose of improving clinical care, VA should expedite the receipt of the optional health evaluation for those registry participants who request one.
For veterans who have not previously accessed VA health care, the health evaluation could be a potential mechanism for connecting those who are eligible with VA health care and other services. As shown in Table 7-4, registry participants who received the AH&OBP Registry optional health evaluation, as well as those who expressed interest in having one but who had not yet received it, were considerably more likely to use VHA than those who did not receive a health evaluation, regardless of their expressed interest in getting one. According to AHBPCE, of the registry participants who had received a health evaluation over 90% were enrolled in VHA care, and 99.6%
___________________
1 Several terms are used for the health evaluation portion of the registry that may be requested by veterans and service members who respond affirmatively to question 7.1.B. The questionnaire uses the term “free health evaluation” and “exam” as of October 26, 2021, but previously the terms “health concerns” and “health examination” (in VHA Directive 1307, August 19, 2019), and “registry examination” (in VHA Directive 1308, March 25, 2022) were used. The committee opted to use the term “health evaluation” for the clinical examination and discussion between the veteran and health provider that may be initiated through the AH&OBP Registry questionnaire.
TABLE 7-3 AH&OBP Registry Participants by Calendar Year
| Calendar Year | New Registry Participants |
|---|---|
| 2014 | 28,471 |
| 2015 | 28,114 |
| 2016 | 40,479 |
| 2017 | 28,067 |
| 2018 | 39,778 |
| 2019 | 26,183 |
| 2020 | 31,215 |
| 2021 | 54,695 |
| 2022 | 1,643 |
| Total | 278,645 |
NOTE: New registry participants for 2022 are through February 1 only.
| Year of VHA Use | Registry Participants with Health Evaluation (n = 18,389) (%) |
Registry Participants without Health Evaluation (n = 190,465) (%) |
Registry Participants without Health Evaluation but Expressed Interest (n = 93,737) (%) |
|---|---|---|---|
| Year prior to registry completion | 54.4 | 34.4 | 43.7 |
| Year of registry completion | 75.2 | 46.1 | 57.7 |
| Year after registry completion | 79.6 | 50.2 | 62.1 |
were eligible for it (VA AHBPCE, 2021). Of the registry’s 200,757 participants as of April 2020, an estimated 66% were repeat VHA users (i.e., had used the VHA at least twice since 2004) (VA, 2020b).
The committee notes that for a veteran to receive the optional health evaluation, he or she is required to first complete and submit the lengthy registry questionnaire. According to the registry website, completing the questionnaire may require 60 or more minutes, depending on the number of eligible deployments (see Chapter 2), which may be frustrating or difficult for some veterans. Many potential registry participants do not complete the questionnaire once they begin it (e.g., about 43% open the registry but do not start the questionnaire; see Chapter 2), indicating that many of those who might have health conditions or symptoms that warrant follow-up are ineligible for the health evaluation and are excluded from any benefits it may confer. Furthermore, veterans who complete the questionnaire must select a link to open a participant letter to learn more about scheduling the health evaluation. VA OIG found that some veterans were not aware that they needed to open the letter after completing the questionnaire, and in many cases veterans did not receive a hardcopy of the letter as they are not required to provide a mailing address on the questionnaire. Finally, although HOME stated that all participants received an email and a letter, VA OIG found that in many cases the email and letter were not sent to registry participants (VA OIG, 2022).
Once the registry questionnaire is submitted, the responsibility for scheduling the health evaluation rests entirely on the participant, who must contact a VA medical center and navigate the complex appointment system (see Figure 7-1). The veteran is informed that scheduling the health evaluation is his or her responsibility via the participant letter. Scheduling may be done at any time after the participant submits his or her questionnaire. Each VA medical facility has a designated environmental health coordinator who is responsible for scheduling the health evaluations (VA, 2019). HOME informed the VA OIG review team that environmental health coordinators also help
“veterans access the online registry questionnaire” (VA OIG, 2022, p. 9), although the committee cannot determine how the coordinators would be aware of veterans who were not already registry participants. VA stated that as of September 2021 the evaluation scheduling process will be more proactive, with an email alert sent to the VA medical facility to which the veteran is assigned, based on his or her residence, to indicate that a veteran (nameless) has expressed an interest in receiving a health evaluation via the registry (i.e., responded yes to question 7.B) (VA, 2021j). This change is designed to alert the local environmental health coordinator that a participant wishes to schedule a health evaluation, but it results in no further action from the coordinator to schedule the requested evaluation until the veteran contacts the local VA medical center. Under the current process, VA takes a passive stance on the registry question of whether a health evaluation is desired and requires participants to independently access a separate and often unfamiliar appointment process to schedule their evaluations. HOME informed the VA OIG review team that in 2019 it established a “flagging system” that could be used by environmental health staff to document outreach to veterans and the disposition of that outreach, e.g., accepted, declined, or did not reach. The flagging system, however, is voluntary and few VA medical facilities appear to use it (VA OIG, 2022). Nonetheless, some VA medical facilities are proactive and have put in place outreach programs to call or email
veterans to schedule an evaluation, and those facilities that have such programs have a higher health evaluation completion rate than many facilities without them (VA OIG, 2022).
VA is taking steps to address the backlog of health evaluations including more oversight and training of environmental health staff. HOME is establishing the Veteran Environmental Team Health Outcomes Military Exposures (VET-HOME) call center to address veterans’ queries about environmental health, the six VA exposure registries, and health evaluation scheduling (VA OIG, 2022). Veterans who use VET-HOME will be expected to have a telehealth health evaluation, followed by an in-person physical if deemed necessary by the clinician; if veterans want an initial in-person evaluation they will need to contact their local environmental health coordinator (VA OIG, 2022). The VA OIG review team noted that staff at the AHBPCE questioned whether telehealth would capture the necessary veteran health data but HOME stated that “the risk of missing vital information by not conducting a thorough physical exam is mitigated by the requirement that the telehealth clinician conduct a records review” (VA OIG, 2022, p. 24). The committee is unclear how a records review would capture relevant data for veterans who were not already enrolled in VHA or had not already undergone the relevant physical examination and diagnostic tests. VA OIG found that an “ineffective exam request process and inaccurate registry data resulted in most interested veterans not receiving Airborne Hazards and Open Burn Pit Registry exams” (VA OIG, 2022, p. 10). The committee concurs with the VA OIG report and reiterates that a proactive process in which the environmental health coordinator follows up and contacts an interested veteran to schedule the registry health evaluation is likely improve the number of veterans who receive an evaluation. One obstacle to reducing the backlog of health evaluations is the lack of communication between HOME and VA medical directors and HOME’s lack of authority to require VA medical facilities to reach out to interested veterans and to complete the evaluations (VA OIG, 2022).
VHA Directive 1307 states that registry health evaluations are to be conducted at the VA medical facility within 90 calendar days of when the veteran requests to be seen (VA, 2019) and this is reiterated in VHA Directive 1308 (VA, 2022f). Table 7-5 shows that nearly all AH&OBP Registry evaluations are conducted after completing the questionnaire (possibly because a provider visit can only be flagged as an AH&OBP Registry health evaluation after questionnaire completion), with more than a third of evaluations being conducted within 1 year of completing the questionnaire, although almost half of them are not conducted until 2 or more years after the questionnaire is completed. VA OIG noted that the number of veterans who have indicated that they wanted an evaluation but had not received one has steadily grown and an average of 4 years had elapsed since a veteran completes the questionnaire and receives an evaluation; however, HOME does not report on the backlog of evaluations to medical directors at VA medical facilities, but rather discusses it only with the medical facility’s environmental health staff (VA OIG, 2022). VA indicated that the date of the evaluation is the date that the clinical note is signed by the provider.
There is no explanation for the varying lag times between completing the questionnaire and receiving the evaluation. It is possible that at the time the questionnaire was completed the participant did not wish to receive an evaluation but later developed symptoms or conditions that might be related to their exposures or that there were difficulties in scheduling the evaluation within the 90-day window. The VA OIG noted that Directive 1307 was
TABLE 7-5 Time between Registry Questionnaire Completion and Date of Health Evaluation
| Time | Frequency | Percentage |
|---|---|---|
| Received evaluation prior | 468 | 1.6 |
| Same day | 228 | 0.8 |
| 1–3 months after | 6,023 | 20.0 |
| 3–6 months after | 2,575 | 8.6 |
| 6–9 months after | 1,490 | 5.0 |
| 9–12 months after | 1,179 | 3.9 |
| 1–2 years after | 3,376 | 11.2 |
| 2+ years after | 14,710 | 49.0 |
| Total | 30,049 | |
unclear about when the 90-day window begins and was variously interpreted to mean when veterans completed the questionnaire indicating they wanted the evaluation or when the veteran actually called the medical facility to schedule it. VA OIG recommended that there be clearer guidance on when the 90-day window begins (VA OIG, 2022). It is also unclear to the committee why some evaluations (n = 468) were conducted prior to the participant completing the registry questionnaire.
The committee compared participants who have and have not received AH&OBP Registry health evaluations with regard to responses to two registry questions about discussing health concerns and last seeing a health care provider (Table 7-6). The results show that about 90% of all participants had seen a health care provider within the previous year regardless of whether they had or had not received the health evaluation (91.5% and 89.4%, respectively); among those who had not received an evaluation, almost 46% had already discussed their concerns with a health care provider, and among those who had received an evaluation 58% had discussed their concerns with a health care provider.
A participant may print out his or her responses to the registry questionnaire and bring them to a health care appointment to serve as a basis for discussions with his or her health provider. The committee notes that the questionnaire does not ask participants about any unmet health needs they may have, nor is there any way for veterans to express such needs or concerns. If the clinician conducting the health evaluation also does not ask about such unmet needs, this may be a missed opportunity to engage participants in a discussion of what medical assistance might be available to them both within and outside of VA and to refer veterans to appropriate resources regardless of their eligibility for VA health care. Such information may indeed improve a veteran’s clinical care.
The registry questionnaire does not indicate any time frame as to when the health evaluation may be requested by the participant after the participant submits the questionnaire, and the registry website states that the veteran may request the evaluation at any time after completing the questionnaire. Indeed it appears that approximately 25% of registry participants do not request a health evaluation when they complete the questionnaire but do so at a later time (VA, 2022d). Should there be a considerable lag between when the questionnaire is completed and when the health evaluation occurs, the participant may have had additional deployments, developed new health concerns, or resolved existing ones, none of which would be captured in the submitted questionnaire but would need to be discussed during the health evaluation.
| Did Not Receive Health Evaluation (n = 248,596) (%) |
Received Health Evaluation (n = 30,049) (%) |
|
|---|---|---|
| Have you discussed your concerns with a health care provider? | ||
| No | 25.1 | 17.4 |
| Yes | 49.4 | 59.4 |
| Not yet, but I would like to | 15.5 | 19.1 |
| Not applicable / not asked | 8.5 | 3.3 |
| Missing | 1.4 | 0.8 |
| When did you last see a health care provider? | ||
| <6 months ago | 77.3 | 81.3 |
| 6–12 months ago | 12.1 | 10.2 |
| 1–2 years ago | 6.0 | 4.7 |
| 2–5 years ago | 2.1 | 1.8 |
| 5+ years ago | 0.6 | 0.6 |
| Never | 0.2 | 0.2 |
| I do not wish to answer/Don’t know/Missing | 1.6 | 1.3 |
Furthermore, as noted earlier, participants cannot revise their responses to the registry questionnaire after submitting it even if they develop or are diagnosed with additional health conditions at a later date. Thus, although participants can request a health evaluation at any time after submitting their questionnaires, they cannot request a subsequent registry evaluation should they have additional health issues at a later date. This may be particularly troublesome for post-9/11 veterans who are no longer eligible for VA health care (i.e., more than 10 years after their separation from the military and who do not meet the criteria for a VA priority group).
Table 7-7 lists the 20 most common health conditions (by International Classification of Diseases, 10th Revision [ICD-10] diagnosis code) in the electronic health records for all registry participants who have used VHA since the registry began (as contained in the committee’s dataset). Several of the non-respiratory conditions, such as mental health disorders or pain, are not included in the registry questionnaire. If the registry is to be used to ascertain frequent health conditions of concern to participants, it would be a less-than-ideal approach because the registry is currently missing several such conditions that could be discussed during a health evaluation. By periodically providing clinicians with information about the range and frequency of these health conditions and diagnoses, VA could inform clinicians about the spectrum of conditions commonly identified in and potentially of concern to registry participants. While this information may not be generalizable to the entire population of potentially exposed individuals, it could provide valuable information that may be used by clinicians when evaluating and planning differential diagnoses.
The committee examined whether there were differences between registry participants who received a health evaluation and those who did not receive a health evaluation with respect to their health conditions, exposures, and demographics. Registry participants who received a health evaluation were more likely to be aged 60 or older, to have served in the Army, and to have been deployed during the 1990–1991 Gulf War (data not shown). Furthermore, those who received an evaluation were also more likely to report many of the exposures on the
TABLE 7-7 Most Prevalent ICD-10 Diagnostic Codes Among AH&OBP Registry Participants
| ICD-10 Code | Description | Unique Participants (n = 199,735) |
Prevalence (%) |
|---|---|---|---|
| M54 | Dorsalgia | 116,713 | 58.4 |
| F43 | Reaction to severe stress, and adjustment disorders | 116,403 | 58.3 |
| G47 | Sleep disorders | 114,599 | 57.4 |
| M25 | Other joint disorder, not elsewhere classified | 111,354 | 55.8 |
| E78 | Disorders of lipoprotein metabolism and other lipidemias | 87,510 | 43.8 |
| F41 | Other anxiety disorders | 70,433 | 35.3 |
| M79 | Other and unspecified soft tissue disorders, not elsewhere classified | 61,362 | 30.7 |
| E66 | Overweight and obesity | 61,357 | 30.7 |
| F33 | Major depressive disorder, recurrent | 60,874 | 30.5 |
| I10 | Essential (primary) hypertension | 58,843 | 29.5 |
| F32 | Depressive episode | 57,447 | 28.8 |
| K21 | Gastro-esophageal reflux disease | 56,951 | 28.5 |
| H52 | Disorders of refraction and accommodation | 53,379 | 26.7 |
| J30 | Vasomotor and allergic rhinitis | 48,979 | 24.5 |
| H93 | Other disorders of ear, not elsewhere classified | 45,744 | 22.9 |
| R06 | Abnormalities of breathing | 42,107 | 21.1 |
| R51 | Headache | 40,673 | 20.4 |
| E55 | Vitamin D deficiency | 40,275 | 20.2 |
| G43 | Migraine | 40,171 | 20.1 |
| G89 | Pain, not elsewhere classified | 37,799 | 18.9 |
NOTE: Only the first three characters of the ICD-10 diagnostic codes are given.
questionnaire compared with those who did not receive an evaluation, including having been exposed to a burn pit on at least one deployment (92.3% versus 90.9%), worked at a burn pit (61.2% versus 55.0%), experienced heavy smoke days (66.0% versus 59.2%), and had dust storm exposure of at least 1 day (84.1% versus 82.8%).
Those who received a health evaluation were also more likely to report having had at least one of the health conditions listed in the registry questionnaire than those who did not receive an evaluation (data not shown). In general, the more health conditions a participant reported having, the more likely he or she was to have an interest in receiving a health evaluation and to have received one (see Table 7-8). For example, 50.3% of participants who reported having four health conditions had an interest in receiving a health evaluation, and 10.2% of those received one, whereas among participants who reported 13 health conditions, 80.1% had an interest in a health evaluation and 19.6% received one.
In 2020, VA contracted for a qualitative assessment of the registry based on feedback from veterans and service members, some of whom had begun the registry questionnaire and some who had not. Based on responses, several clarifications to the wording of the health evaluation portion of the registry questionnaire were suggested, including a better explanation that participants can obtain the health evaluation at any time after they complete the questionnaire. Another recommendation was that VA clarify the purpose of the health evaluation, consider referring to it as a “consultation” or “checkup,” and emphasize that it is “recommended” rather than “optional.”
| Number of Health Conditions Reported | All Participants (n = 278,645) |
Interest in a Health Evaluation (n = 140,482) |
Health Evaluation Received (n = 30,049) |
|---|---|---|---|
| 0 | 6,042 | 766 (12.7%) | 291 (4.8%) |
| 1 | 16,701 | 3,196 (19.1%) | 756 (4.5%) |
| 2 | 29,062 | 8,751 (30.1%) | 1,924 (6.6%) |
| 3 | 42,606 | 17,481 (41.0%) | 3,686 (8.7%) |
| 4 | 51,393 | 25,861 (50.3%) | 5,259 (10.2%) |
| 5 | 47,245 | 26,880 (56.9%) | 5,688 (12.0%) |
| 6 | 35,071 | 21,720 (61.9%) | 4,594 (13.1%) |
| 7 | 22,701 | 15,256 (67.2%) | 3,308 (14.6%) |
| 8 | 13,292 | 9,424 (70.9%) | 2,054 (15.5%) |
| 9 | 7,279 | 5,467 (75.1%) | 1,201 (16.5%) |
| 10 | 3,708 | 2,856 (77.0%) | 640 (17.3%) |
| 11 | 1,850 | 1,443 (78.0%) | 323 (17.5%) |
| 12 | 893 | 727 (81.4%) | 157 (17.6%) |
| 13 | 413 | 331 (80.1%) | 81 (19.6%) |
| 14 | 200 | 157 (78.5%) | 40 (20.0%) |
| 15 | 96 | 84 (87.5%) | 22 (22.9%) |
| 16 | 39 | 35 (89.7%) | 14 (35.9%) |
| 17 | 23 | 20 (87.0%) | 2 (8.7%) |
| 18 | 15 | 13 (86.7%) | 5 (33.3%) |
| 19 | 8 | 6 (75.0%) | 3 (37.5%) |
| 20 | 8 | 8 (100.0%) | 1 (12.5%) |
NOTES: The fourth column of health evaluation received is not a subset of the third column. There are participants who received health evaluations even though they did not respond “yes” to the question regarding their interest in wanting to receive a health evaluation.
Prior to October 26, 2021, registry question 7.1.B read “Do you wish to see a Department of Defense (DoD) or VA health care provider to discuss your health concerns related to airborne hazards during deployment?” and the response options were yes, no, or don’t know. As of October 26, 2021, question 7.1.B was revised to read “Do you wish to request the AHOBPR free health evaluation after finishing this questionnaire? During this evaluation, you can see a health care provider to discuss your health concerns related to your deployment.” As noted earlier in this section, the wording of this question may still result in confusion on the part of the veteran about whether responding affirmatively constitutes a “request” for the health evaluation. The wording does not make it clear that the onus is on the veteran to contact VA and schedule the health evaluation and thus begin the 90-day timeline (VA OIG, 2022). Given the small number of health evaluations conducted to date, having more participants request an evaluation but be unable to receive it in a timely manner is likely to result in frustration for both the participants and VA.
The committee finds that changing the wording of the questionnaire without changing the underlying process (i.e., the need for veteran participants to proactively contact a VA environmental health coordinator to schedule the health evaluation; see Figure 7-1) is unlikely to improve veterans’ access to the health evaluation or use of VA health care.
Conducting the Health Evaluation
The specifics on how the health evaluation is to be performed by VA and DoD clinicians were described in detail in the initial assessment report (NASEM, 2017) and have not substantially changed since then. AH&OBP Registry health evaluations are conducted at VA medical facilities by a VA primary care physician, the lead environmental health clinician, or the patient-aligned care team. VA “must ensure an individual record is established for the Veteran in VA’s current electronic health record” for the health evaluation regardless of whether the veteran is eligible for VHA care (VA, 2019). VA providers are encouraged to access and review an individual’s responses to the registry questionnaire online through a secure portal prior to the evaluation.
In August 2019, VHA issued Directive 1307: Airborne Hazards and Open Burn Pit Registry, which set forth clinical and administrative policies for the registry and established procedures for the health evaluation, including both clinical and administrative guidance for providers conducting the evaluation, and procedures for preparing the post-evaluation letters to veterans.2 The AH&OBP Registry health evaluation includes a physical examination and any associated laboratory tests, a discussion of health risks with a provider, and an objective recording of current health status (VA, 2014). Prior to VHA Directive 1307, the in-person evaluation was not standardized, and VA clinicians received only general guidance on conducting the evaluations via a training webinar. Subsequently, VA developed the National Note Airborne Hazards and Burn Pit Initial Evaluation Clinical Template (now the AHOBPR Clinical Template) to be used by clinicians when conducting the physical examinations as required by VHA Directives 1307 and 1308 (VA, 2019, 2022f). The clinical guidance and the template are located within the computerized patient record system (i.e., the veteran’s VHA electronic health record), and they standardize the clinical evaluations, collect information on health outcomes, and capture administrative data for registry monitoring and improvement. The template provides links to additional information about airborne hazards and health conditions possibly related to those exposures; its use is required by Directive 1308. Between 2018 and 2020, VA conducted educational activities for its staff at its medical centers to ensure the use of the template for the registry health evaluations. VA has also modified its approach so that “clinics can document a prior exam not completed on the template within the AHOBPR portal” (VA, 2022c). VA did not provide statistics on how often the template is used or by whom.
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2 On March 25, 2022, VHA issued Directive 1308 (VA, 2022f), which rescinded VHA Directive 1307 and moved details of the eligibility criteria and evaluation protocols for six VA registry programs, including the AH&OBP Registry, to the VA Health Outcomes Military Exposures intranet so they are no longer publicly available.
The clinical guidance and the template for the health evaluation document the following (VA, 2019):
- the person’s chief complaint;
- medical, social, family, and substance-use history;
- a physical examination, including vital signs and major body systems, focusing on the respiratory system with pulse oximetry, and documenting positive and negative findings by body system;
- requests for and review of diagnostic tests and evaluations such as computerized tomography and radiographs and laboratory tests; and
- an overall assessment and follow-up recommendations.
VHA Directives 1307 and 1308 indicate that, depending on the initial evaluation results, further consultations or specialty examinations may be justified and provided as part of the health evaluation. The committee notes that VHA Directive 1307 was specific to the AH&OBP Registry and covered definitions, responsibilities, policy, records management, reporting requirements and training; it also contained clinical and administrative guidance on conducting the optional registry health evaluation and follow-up procedures such as the post-examination letters. The new VHA Directive 1308 covers all the HOME registries, and identifies definitions, responsibilities, policy, records managements, and training but no longer makes publicly available the guidance on conducting the AH&OBP health evaluations, although such information may be accessed via the VA intranet by VA staff.
The AH&OBP health evaluation results could inform both VA and external health care providers about the participants’ health status. VA clinicians have access to the veterans’ responses to the registry questionnaire and might identify the hazardous exposures a veteran has reported and use that information to elicit more details on the exposures during a clinical interview and health evaluation; any additional interview information could then be included in the veteran’s VHA health record. However, the current template for the health evaluation, although it calls for documentation of the veteran’s medical, social, family, and substance-use history, does not include review and documentation of the veteran’s military—and, specifically, deployment—exposures. Including a military history with both deployments and exposures in the template would improve the health evaluation. A clinical discussion may be based on the registry participant’s responses to the exposure section on the questionnaire, but it should elicit a more in-depth assessment of the participant’s deployment exposures for inclusion in the veteran’s electronic health record. VA and DoD clinicians are able to access a veteran’s or service member’s electronic health records more easily than they can access the registry questionnaire.
The committee recommends that the Airborne Hazards and Open Burn Pit Registry Clinical Template for registry health evaluations and the accompanying clinical guidance be modified to ensure that the VA clinician conducting the evaluation discusses the registry participant’s military deployment and exposure histories with the participant and documents the information in the participant’s electronic health record.
The information collected during an evaluation is recorded in the veteran’s electronic health record rather than entered into the participant’s registry questionnaire responses,3 but there is no “flag” in the electronic health record that the veteran is a registry participant. The health evaluation can also capture health information that is not collected by the registry questionnaire, such as additional diagnoses, more details about those diagnoses not listed on the questionnaire, or unmet health care needs, as part of the overall assessment. For example, the in-depth health evaluations may reveal illnesses that were not identified by regular primary care visits or identified on the questionnaire (VA, 2021e). Indeed, an analysis of participant responses on the questionnaire for three respiratory conditions (asthma, lung cancer, and chronic lung condition encompassing chronic obstructive pulmonary disease [COPD], emphysema, and chronic bronchitis) found slight to moderate agreement between self-reported medical history and VHA medical diagnoses for those conditions in the AH&OBP registry (VA, 2020b). However, there
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3 Personal communication, Dr. Eric Shuping, director, Post-9/11 Era Environmental Health Program, Health Outcomes Military Exposures, VA. January 26, 2021.
is no mechanism to update or correct the registry participant’s questionnaire responses to reflect the results of the health evaluation.
Directive 1307 states “AHOBPR laboratory studies/tests and the optional in-person health examinations, to include diagnoses, are for registry purposes only (i.e., they do not constitute examinations for purposes of treatment) (VA, 2019).” This statement is inconsistent with the standard of care, and veterans who have examinations and diagnostic testing that result in a diagnosis should receive a referral for development of a treatment plan and follow-up by a VA, DoD, or community provider.
As noted in the National Academies initial assessment report (NASEM, 2017), DoD does not require a specific form for the clinical evaluation, but providers are encouraged to review the service member’s questionnaire; to take a medical history that focuses on occupational and environmental exposures; and to determine the person’s primary health concern. The provider may perform a physical examination, order additional diagnostic tests, or refer the service member to a specialist for further evaluation. The examination, diagnoses, and any referrals are documented in the service member’s medical record. DoD has developed provider education and training—including a downloadable provider registry evaluation toolbox—about the registry and the associated health evaluation for clinicians who see service members (DHA, 2022).
The types of VA clinicians (i.e., primary care or specialists) that access registry questionnaire and health evaluation data, the frequency of their access, and how they use the registry data are not tracked by VA.4 Without this information being tracked, neither VA nor the committee can assess whether the AH&OBP Registry is used by health care providers to improve clinical care.
VA clinicians who perform registry health evaluations are required to complete a brief, 1.5-hour training session on conducting the evaluations and using the template. These clinicians are responsible for documenting the results of the evaluation and, if appropriate, referring veterans for follow-up care (VA, 2019). For veterans enrolled in VHA, referrals to primary care clinicians or specialists can be entered directly into the veteran’s electronic health record. VHA requires that “any consults or specialty examination results will be forwarded to the Veteran’s primary care provider, whether VA or civilian in the post-examination follow-up letter” (VA, 2019). Veterans who are not VHA users and who receive health care in the community receive a letter summarizing the results of their health evaluation; this letter along with a printout of their responses to the registry questionnaire can be taken to medical appointments. The post-examination (health evaluation) follow-up letter is particularly important for veterans or service members who receive care outside of VHA because non-VA clinicians cannot access registry participants’ information or the health evaluation template. It is unclear whether the follow-up letter is given only to the veteran or is indeed sent to a veteran’s community primary care provider. Furthermore, follow-up examinations by non-VA clinicians cannot be recorded in the veteran’s VA health record (VA, 2019).
Assessment of the AH&OBP Registry for Improving Clinical Care
Completing and submitting the AH&OBP Registry self-assessment questionnaire will not in itself facilitate access to VHA care since participating in the registry does not automatically lead to a health evaluation or enrollment in VHA. Rather, the participant must proactively contact his or her local VA environmental health coordinator to schedule the health evaluation. The need for participants to be proactive about contacting their local VA, particularly for those participants who may not already be enrolled in VHA, may be an extra step that affects a participant’s interest in the evaluation. Furthermore, as noted earlier in the chapter, of the 50% of registry participants who had an interest in having an evaluation, less than 11% of them have actually received one.
The Airborne Hazards and Open Burn Pit Registry Clinical Template, which is part of the electronic health record of veterans who are enrolled in VHA, helps ensure consistency in what is recorded by the clinician who conducts the registry health evaluation. The committee had no information on whether or how often clinicians use the template.
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4 Personal communication, Dr. Eric Shuping, director, Post-9/11 Era Environmental Health Program, Health Outcomes Military Exposures, VA. January 26, 2021.
The committee finds that VA has made progress in making the health evaluation clinical process consistent across VHA through the use of a clinical template and provider training on using the template and conducting the evaluations.
Requesting and receiving a health evaluation does not mean that a veteran can access care for any health conditions that are identified during the evaluation, as he or she must meet the criteria for a priority group. Registry participants who are not eligible for VHA care must seek care outside of VA. Furthermore, the environmental health physician who performs the registry evaluation is not required to assist veterans with making follow-up appointments either within or outside of VHA.
The committee finds that participation in the registry may encourage veterans and service members to request a health evaluation and to seek follow-up care within or outside of VA for any health conditions identified by the evaluation.
A registry participant’s access to VHA is contingent on their qualifying for VHA enrollment. Thus completion of the registry questionnaire, paired with a subsequent health evaluation, may have the benefit of enhancing veterans’ knowledge of their health status despite the fact that registry participation does not enhance their eligibility for VHA health care. The committee also notes that the registry health evaluation does not replace the Veterans Benefits Administration’s disability examination (see Chapter 8).
VA informs potential registry participants that “[t]hese Registry evaluations are designed to create a database of long-term health conditions that may be related to exposure to specific environmental hazards during military service” (VA, 2021f). However, VA does not provide longitudinal or ongoing health monitoring of individual registry participants. VA stated that registry processes have evolved to include “more robust messaging about how participation can help Veterans monitor their own health more proactively, specifically with regard to the health evaluation” (VA, 2021f). Nevertheless, the committee is unclear about how participation in the registry at present can help veterans proactively monitor their health as they cannot update their health information in the registry after they submit the registry questionnaire, nor are the results of the single-time health evaluation used to confirm or correct a veteran’s responses to the questionnaire.
The committee concludes that the AH&OBP Registry health evaluation may enhance a veteran’s knowledge of his or her health status, but it does not improve a veteran’s access to or continuity of health care.
The committee recommends that VA simplify the scheduling of the registry’s optional health evaluation by having the VA environmental health coordinator proactively reach out to a veteran when notified of his or her interest via completion of the AH&OBP Registry questionnaire.
The committee recommends that at the end of the health evaluation, VA should proactively schedule any necessary referrals with the appropriate VA providers for veterans enrolled in VHA to ensure that they receive the appropriate diagnoses and treatments. The committee recognizes that this proactive scheduling will not be possible for veterans who receive health care outside of VA.
The Airborne Hazards and Burn Pits Center of Excellence
In 2019 VA established AHBPCE, and charged it with improving the consistency and quality of the registry health evaluations of registry participants and with identifying registry participants with certain respiratory health conditions. The AHBPCE website states, “By studying Veterans with specific categories of health concerns drawn from the registry, the Airborne Hazards and Burn Pits Center of Excellence (AHBPCE) aims to generalize and extend clinical findings from beyond any one individual to a broader group (or cohort) of Veterans” (VA, 2022e). To address these goals, the AHBPCE created two collaborative programs—the Post-Deployment Cardiopulmonary Exposure Network (PDCEN) and the AHBPCE Center for Innovations in Quality, Effectiveness and Safety
(IQuEST) Military Exposure Surveillance (AIMES) collaboration—both of which are discussed in Chapter 5. The role of these two collaborations in facilitating participants’ access to and use of health care is briefly summarized here.
PDCEN invites selected registry participants with certain health conditions or diagnoses to undergo an in-depth advanced comprehensive cardiopulmonary evaluation at one of six sites nationwide. These evaluations are distinct from the registry health evaluations described earlier and are standardized across sites (VA AHBPCE, 2021). Only veterans who are enrolled in VHA, who are in the registry, and who self-report having constrictive bronchiolitis; obstructive lung disease, such as COPD or asthma; idiopathic pulmonary fibrosis or other interstitial lung disease; or unexplained shortness of breath are eligible for the in-depth evaluation (VA, 2021g). As of May 2022, 96 registry participants had received a PDCEN in-depth cardiopulmonary evaluation (VA, 2022d). The evaluation may include:
- History and physical examination
- Detailed lifetime exposure assessment (pre-deployment, during deployment, and post-deployment)
- Advanced cardiopulmonary services, such as pulmonary function testing, forced oscillometry, broncho-provocation, and, in the future, cardiopulmonary exercise testing
- Chest imaging (computerized tomography scan and chest x-ray)
- Ear, nose, and throat examination with imaging (i.e., a computerized tomography scan of sinuses)
- A sleep study
- Mental health screenings
- Laboratory tests
Although it is not a mechanism to facilitate veterans’ access to health care, the AIMES collaboration seeks to identify best practices for conducting airborne hazards health evaluations across VA medical centers, with the goal of improving those evaluations and creating high-quality provider education products. The collaboration will result in a summary of best practices and a toolkit to facilitate the health evaluations which will be disseminated across VA medical centers. VA expects that the AIMES products will improve the veteran experience with the registry health evaluation, improve the consistency and reliability of the evaluations across VHA, and enhance scientific understanding of airborne hazards, through:
- Curation of a merged database of AH&OBP Registry and Corporate Data Warehouse (clinical) data;
- Creation of standard reports from the merged database and regular production of these reports;
- Identification and evaluation of VHA sites with clinical examination best practices;
- Written summary of best practices based on metrics and interviews with those sites;
- Development of a toolkit for implementation of best practices to be used across VHA;
- Use of a dashboard of AH&OBP Registry implementation and sustainment metrics for all VA medical centers; and
- Facilitated implementation of AH&OBP Registry clinical examinations at 45 VA medical centers (VA AHBPCE, 2021).
In the future, AHBPCE may improve clinical care via its AIMES and PDCEN collaborative programs; however, the lack of peer-reviewed publications or other public updates on the status of these collaboratives makes it difficult to ascertain AHBPCE’s progress, and thus, the benefits of its endeavors. AHBPCE staff did not provide further information on how the 96 AH&OBP Registry participants who have been examined in the PDCEN program have informed clinical care on the four selected respiratory conditions, nor did they provide any details on the AIMES best practice guidance, metrics, reports, or toolkit.
APPROACHES TO IMPROVE ACCESS TO AND USE OF HEALTH CARE SERVICES
There is little information about the role of exposure registries in improving clinical care or access to it. Examples of exposure registries that are linked to health care are discussed below and in greater detail in Chapter
4. The Gulf War Registry includes a thorough clinical examination for every registrant, and the DoD/VA individual longitudinal exposure record (ILER) may provide additional deployment exposure and location information to inform health care. Although the results of the Millennium Cohort Study and various VA surveys and epidemiologic research studies can be translated into future health care improvements, none provide access to a diagnosis or treatment.
The Gulf War Registry
The Gulf War Registry was intended to assess possible Gulf War-related conditions in service members and veterans and to streamline active-duty service members’ access to health care. Participation in the Gulf War Registry requires that a veteran or active-duty service member complete a two-phased assessment: a self-report questionnaire and a comprehensive physical examination. As discussed in Chapter 4, many veterans and service members are eligible for both the Gulf War Registry and the AH&OBP Registry, but it is unclear why a veteran might choose to join either or both registries.
If the physical examination does not readily point to diagnoses that explain the veteran’s health symptoms or if a veteran reports new symptoms after an initial examination, the VA clinician will refer the participant for a follow-up examination with the Uniform Case Assessment Protocol (see Chapter 4), which is used to assess complex or unexplained health conditions. Medical diagnoses are noted during both the initial and any follow-up examinations, and the veteran or service member is advised to seek follow-up care and treatment either at VA (if eligible) or in the community (VA, 2017). The committee notes that not all Gulf War Registry participants have health concerns. Among 1990–1991 Gulf War veterans who received a Gulf War Registry examination between 1992 and 1996, 12.3% reported no health complaints at the time of the examination (Murphy et al., 1999).
As with the AH&OBP Registry health evaluation, if a veteran receives a Gulf War Registry examination and does not have a medical record at VA, one must be established for him or her (VA, 2017). VA indicates that “Veterans can receive additional registry exams, if new problems develop” (VA, 2021h).
The Gulf War Registry examination has the potential to provide access to specially trained, knowledgeable providers who understand the possible health consequences of military exposures. These providers, who receive continuing medical education from VA on the exposures of interest, may act as a trusted and valuable resource for communicating health risks to registry participants.
Although the Gulf War Registry does not improve access to longitudinal health care, the comprehensive physical examination required for participation in the Gulf War Registry allows veterans and service members to share their experiences and concerns with a specially trained health care provider. It also provides each participant with a valuable assessment of his or her current health status.
Individual Longitudinal Exposure Record
DoD and VA recognize the value of exposure information for enhancing clinical care and intend that clinicians will use ILER to improve health care for service members and veterans who have exposure-related health concerns (Shuping et al., 2020). Health care providers can search ILER to find exposure information by deployment and garrison locations, including “confirmed/probable exposures” (about 10 meters), “possible exposures” (to about 50 meters), and “supplementary ambient monitoring data” (for exposures 100 meters or more away).
ILER is available to clinicians at both DoD and VA health care facilities (see Chapter 4). As of October 2021, 90% (118 of 131) of VA medical centers had at least one ILER-trained clinician or environmental health administrator, but only 330 VA staff had been trained to use ILER.5 To access ILER, clinicians and staff undergo training, request an account, and follow HIPAA and cybersecurity requirements. Additionally, clinicians must access ILER at least once every 35 days to maintain their accounts (Shuping et al., 2020).
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5 Personal communication, Dr. Eric Shuping, director, Post-9/11 Era Environmental Health Program, Health Outcomes Military Exposures, VA. October 12, 2021.
ILER’s usefulness in a clinical setting has yet to be demonstrated, and there are many potential barriers and challenges. First, because ILER compiles a large amount of information but does not interpret or distill it, the burden is on the clinician to make sense of a large amount of technical data. Additionally, because ILER may or may not contain individual-level data, clinicians may be forced to make assumptions about individual-level exposures based on installation or unit-level exposures. The need to interpret the unsynthesized exposure information places increased importance and demands on the education, training, and level of effort required of clinicians. For veterans deployed before 2006, little exposure information is currently available, and there is no clinical summary information from DoD electronic health records available in ILER prior to 2012. Due to the security classification of more recent deployments, data for these veterans may also be unavailable. The lack of historical and recent exposure data also limits the value of ILER for some veterans.
Although in principle ILER will allow access to exposure data and some health information for veterans, in practice it has yet to be tested or proven useful for clinical care. Whereas AH&OBP Registry data are available only for certain deployment locations and time periods for those who complete and submit the questionnaire, ILER may provide objective data about exposures that should minimize the impacts of recall bias and self-reported exposures associated with voluntary registries. However, ILER is not useful for clinical care if the compiled data are not readily accessible and usable by busy health care providers seeing patients in the clinic or hospital setting. The small number of VA staff trained to use ILER means that access to this information is extremely limited.
ILER is a compiler of exposure information and as such does not facilitate access to VA health care. Service members’ access to and use of DoD health care is not dependent on ILER. ILER will not be useful for veterans deployed prior to 2006, those who receive care out of VA, or veterans who do not qualify for VHA enrollment. Furthermore, ILER information does not and is unlikely to play a role in improving clinical care.
INITIAL ASSESSMENT RECOMMENDATIONS
The reassessment committee’s Statement of Task requires, “The report should additionally address how VA has done in implementing the recommendations offered in the 2017 NASEM report,” which the committee does next and at the end of each other chapter (chapters 3, 5, and 9) for which initial assessment recommendations are relevant. Two of the initial assessment recommendations pertain to the information presented in this chapter and are given below, followed by VA’s verbatim response to them, and then the current committee’s assessment of VA’s response and any new information that was been presented. The section is not to be interpreted as an endorsement of the initial assessment committee’s recommendations.
Initial Assessment Recommendation: The committee recommends that VA enhance the utility of the AH&OBP Registry by developing a concise version of participant’s questionnaire responses focused on information that would be most useful in a routine clinical encounter and make it available for download.
VA Response: This is completed and available for clinicians to use at the VA facilities.
Reassessment Committee Response: VA did not provide the reassessment committee with a copy of the concise version of a registry participant’s questionnaire responses that VA reports is available for clinicians at VA facilities. Therefore, although the committee is aware that clinicians at VA medical facilities can access a registry participant’s responses to the questionnaire, it is unclear whether there is an abbreviated version that would, for example, not include responses on hobbies or childhood residence locations that are unlikely to be useful for the health evaluation. Such an abbreviated version would be very useful as a foundation for the discussion of military service and deployment history during the registry health evaluation.
Initial Assessment Recommendation: The committee recommends that VA continue its efforts to make it easier for participants to schedule and get the optional health examination offered as part of the AH&OBP Registry—such
as through targeted follow-up of respondents who indicate interest—and that it investigate the reasons why such a small percentage of respondents who indicate interest in an exam (~2.5%, to date) receive one.
VA Response: VA has taken a direct approach to increasing exams, with messaging, calling veterans to assist making appointments, and working with VSOs [veterans service organizations]. In early 2019, the average number of AH&OBP Registry [health evaluations] exams was about 368 per month. It is currently 589 per month. As of August 1, 2020, 14,932 registry health [evaluations] exams have been conducted for an estimated 90,257 of veteran participants who have requested one. Exams are not counted if the AH&OBP Registry template is not used. Over the past 2 years, VA has focused on education to ensure providers are aware that the AH&OBP Registry template is available in the patient record along with templates for other exams. VA has found that 97% of veterans in the Registry are enrolled in VA health care and that 74% have been seen in VA health care within the last 2 years.
Reassessment Committee Response: VA has not adequately addressed this recommendation. VA indicates that although the number of service members and veterans who have received a health evaluation has improved, it is still quite low relative to the number of veterans who have expressed an interest in one. VA further acknowledges that the number of health evaluations it has conducted is not sufficient and that the failure to reach a sufficient number may be due to some facilities lacking the resources to conduct them. As of February 1, 2022, there were 278,645 participants who had completed the registry questionnaire, of whom approximately 50% had expressed an interest in having a health evaluation, and 30,049 (11%) of whom had received a health evaluation. The committee and VA OIG (2022) agree with VA that this number is inadequate and that efforts should be made to improve the number of health evaluations that are conducted within 90 days of the request. In this chapter the committee has made several recommendations to facilitate a veteran scheduling an evaluation and similar recommendations were also made by VA OIG (2022). However, without sufficient resources (human and financial) to complete the evaluations for those who have already expressed an interest in one, the backlog of uncompleted evaluations is likely to continue to grow. VA has a new process whereby a registry participant’s indication that he or she wishes to receive a health evaluation triggers a notice to the environmental health coordinator in the closest VA medical center to let the center know that someone has completed the questionnaire. This notice is supposed to facilitate scheduling the health evaluation, but as with the current process, the registry participant must still take the initiative to schedule the health evaluation as noted by the committee earlier in this chapter and by VA OIG (2022).
SYNOPSIS
The AH&OBP Registry, particularly the optional health evaluation, may serve as an entry point into VA health care for veterans who are eligible to enroll in VHA. The registry website states, “Completing the questionnaire can also help you proactively identify health concerns, discuss them with your health care provider, and get follow-up care” (VA, 2021i).
However, the committee finds that there are substantial issues with using the AH&OBP Registry to improve clinical care: For a veteran to receive the optional health evaluation, he or she must first complete the lengthy, online self-assessment questionnaire, which captures only a select set of health outcomes, and once the participant has expressed an interest in having a health evaluation, the responsibility for scheduling the evaluation with the VA environmental health coordinator rests entirely on the veteran, as does follow-up for any referrals the participant may receive.
Veterans who served in a theater of combat operations after November 11, 1998, and who were discharged less than 5 years ago are eligible for VA health care for 5 years after separation from the military and by eligibility for a priority group after that, although PL 117-168 extended the eligibility period to 10 years. These restrictions on eligibility for VA health care mean that a veteran’s participation in the AH&OBP Registry does not necessarily result in his or her access to VA health care even if the veteran has a health condition that may be related
to exposure to airborne hazards or burn pits, unless there is a service connection for that health condition (e.g., rhinitis). At present, only about 10% of those participants who have an interest in having a health evaluation have received one, although about 50% of registry participants have expressed such an interest. Veterans who are not eligible for VA health care must seek care outside of VHA. VA OIG noted that the number of veterans who have indicated that they wanted an evaluation but had not received one has steadily grown and an average of 4 years had elapsed between when a veteran completes the questionnaire and receives an evaluation. A number of reasons for the backlog were cited by HOME and OIG including data inaccuracies in assigning a veteran to a VA medical facility, outdated contact information for environmental health coordinators, lack of resources at the medical facility, and the COVID pandemic.
Completing and submitting the AH&OBP Registry questionnaire and electing to receive the optional health evaluation does not directly affect a veteran’s care or assignment to a priority group. However, the health evaluation does provide an opportunity for service members and veterans to speak with knowledgeable health care providers who are trained to understand the deployment exposures that service members’ experienced, a benefit which is generally not available in civilian health care. The health evaluation also is an opportunity for VA health care providers to perform physical examinations on participants, advise them on health risks, and recommend medical screening and follow-up activities, regardless of the participant’s eligibility for VA health care. VA has worked to standardize the health evaluation by implementing the Airborne Hazards and Open Burn Pit Registry Clinical Template with accompanying guidance on its use; the template is available electronically to VHA clinicians. The AH&OBP Registry questionnaire does not ask participants about unmet health needs, although the VA health care provider may do so during the health evaluation.
The committee recommends that the Airborne Hazards and Open Burn Pit Registry Clinical Template for registry health evaluations and the accompanying clinical guidance be modified to ensure that the VA clinician conducting the evaluation discusses the registry participant’s military deployment and exposure history with the participant and documents the information in the participant’s electronic health record.
Veterans who complete and submit the questionnaire can save and print out their responses and, for those who have received a health evaluation, receive a summary of the results of that evaluation. These materials can be shared with the veteran’s health care providers, both within and outside VA, to discuss the veteran’s health care needs, diagnoses, and, if appropriate, treatment. However, the registry questionnaire print out is not summarized in a concise, clinically relevant format. At the conclusion of the health evaluation, those enrolled in VHA will also have a note about any referrals included in their electronic health record. An electronic health record is established for all registry participants who receive a health evaluation regardless of whether they qualify for VHA enrollment. Information from the health evaluation is not used to confirm or correct participants’ responses to the questionnaire.
Although no data were available to the committee that described trends in VA health care enrollment following registry enrollment or receipt of the health evaluation, it appears that participating in the registry and, to a lesser extent, receiving the evaluation may increase subsequent VHA use. Thus, joining the AH&OBP Registry might be an incentive for eligible registry participants to seek VA health care if already enrolled or to join VHA if they are eligible and have not already done so.
AHBPCE is taking the lead on developing clinical guidance on best practices for conducting the health evaluations via its AIMES collaborative. Through the PDCEN collaborative, AHBPCE is also conducting additional in-depth health evaluations for a small, select number of veterans with specific serious respiratory diseases (e.g., COPD) to study optimal treatments. The committee did not receive any information to indicate whether AHBPCE’s efforts such as AIMES and PDCEN have resulted in improved clinical care for veterans or service members with those selected respiratory conditions. Improving clinical care for registry participants depends on the availability and knowledge of the VA environmental health care providers and on the translation of research on military exposures into clinical practice.
The committee finds that participation in the registry may encourage veterans and service members to request a health evaluation and to seek follow-up care within or outside of VA for any health conditions identified by the evaluation.
The committee concludes that the AH&OBP Registry health evaluation may enhance a veteran’s knowledge of his or her health status, but it does not improve a veteran’s access to or continuity of health care.
The health evaluation may provide an entry to VHA for some eligible veterans, but for veterans who are not eligible for VA health care, the benefits of participating in the registry are less tangible.
The committee recommends that in order for the registry to fulfill its stated purpose of improving clinical care, VA should expedite the receipt of the optional health evaluation for those registry participants who request one.
The committee recommends that VA simplify the scheduling of the registry’s optional health evaluation by having the VA environmental health coordinator proactively reach out to a veteran when notified of his or her interest via completion of the AH&OBP Registry questionnaire.
The committee recommends that at the end of the health evaluation VA should proactively schedule any necessary referrals with the appropriate VA providers for veterans enrolled in VHA to ensure that they receive the appropriate diagnoses and treatments. The committee recognizes that this proactive scheduling will not be possible for veterans who receive health care outside of VA.
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