• determination of what message channels (e.g., email, newsletters, social media, Internet, telephone calls) will be used for outreach activities to different audiences; and
• evaluation of the impact and effectiveness of the communication strategy, including metrics of success.

Outreach activities may range from direct contact with individuals regarding specific topics to broad multimedia campaigns, such as a public information campaign.

In this chapter the committee considers whether and how the AH&OBP Registry meets the requirements of PL 112-260. It also addresses VA’s additional stated purposes of communicating with veterans and service members, veteran service organizations (VSOs), health care providers, and other stakeholders and providing VA clinicians with actionable information for veteran education. Given that VA’s current communication and outreach activities build on earlier efforts, the chapter begins with a review of the initial assessments committee’s findings on the registry’s communication and outreach activities. The chapter then describes the role of Health Outcomes Military Exposures (HOME) in the Veterans Health Administration’s (VHA) Office of Patient Care Services and of the Airborne Hazards and Burn Pits Center of Excellence (AHBPCE) in preparing and disseminating registry information to various stakeholders who range from potential participants to Congress. The HOME Environmental Health Program develops educational and outreach materials on various military exposures and health outcomes related to those exposures. The committee emphasizes that it did not evaluate the factual content of any of the individual communication materials discussed in this chapter, but rather it focused on the methods that VA and, in some cases, DoD use to disseminate the materials to the stated audiences. The committee then describes the audiences for the communication materials and the communication channels that are used to reach them. The communication channels are as follows:

• From VA to potential AH&OBP Registry participants;
• From VA to current AH&OBP Registry participants;
• From VA and DoD to health care providers and other communicators both within and outside of VA and DoD; and
• From VA to other stakeholders such as Congress, VSOs, caregivers, and non-VA health care providers.

The committee also considered how stakeholders—particularly registry participants—may communicate their concerns about the health effects of deployment exposures to VA. Finally, the committee discusses the World Trade Center Health Registry, which the committee found to have an exemplary communication and outreach strategy, aspects of which might be incorporated into the AH&OBP Registry.

INITIAL ASSESSMENT COMMITTEE’S FINDINGS

The initial assessment committee received a copy of VA’s 2016 communications strategy for the AH&OBP Registry (VA, 2016). The strategy, developed 2 years after the registry launched, relied on internal and external intermediaries, such as VSOs and VA environmental health coordinators, to promote awareness of and participation in the registry (NASEM, 2017). The strategy also called for the use of several electronic and in-person communication channels, including webpages, social media messaging, GovDelivery listserv emails, a Twitter chat, posts to the VAntage Point blog, and announcements at various governmental and VSO meetings and during the internal VA environmental health coordinators quarterly calls. The public information campaign also used posts to VA and DoD social media platforms and websites, articles in VA topical newsletters and military-oriented newspapers, communications from each service branch to their respective active-duty service members, and postcards and factsheets posted or made available in VA and DoD medical facilities. The stated goal of this campaign was to maximize the reach to and participation of younger veterans who were more likely to use electronic communication platforms (NASEM, 2017).

The initial assessment committee found the strong emphasis on passive electronic media, particularly social media, for communications and outreach activities to veterans to be problematic for two reasons (NASEM, 2017). First, although younger veterans are more likely to use social media and the Internet than older veterans, even

younger veterans might not be reached if they do not access or follow the specific media channels that promote the registry (such as VA’s Facebook pages, Twitter feed, blogs, and podcasts). Second, research shows that multiple media modalities, electronic and otherwise, are necessary to contact and recruit participants in probability-based surveys (Dillman et al., 2014; Smyth et al., 2014). For example, very few web-based surveys have been successful in recruiting participants using only indirect or passive, i.e., “push out,” communications (e.g., general social media, message boards), with “pull in” communications generally being more effective (e.g., surveys sent to veterans asking them to participate) (Antoun et al., 2016; Couper, 2017; Scherpenzeel and Toepoel, 2012; Tourangeau et al., 2013).

The initial assessment committee suggested that a focused approach with direct contacts with potential participants would help ensure that the appropriate audience was contacted, as opposed to generic posts and shares on government websites and VA social media sites or other types of communications that may not be accessed by and thus fail to reach the intended audience (NASEM, 2017). That committee also suggested that VA explore targeting communications to certain groups, such as individuals who start but do not complete the questionnaire, veterans who are likely to have been highly exposed (based on DoD deployment records), or other specific groups of potential participants. Moreover, outreach efforts “should target all eligible persons, regardless of whether they were exposed to a burn pit, and the messages should encourage all eligible persons to participate, emphasizing participation for persons not experiencing symptoms of poor health and those who were not exposed specifically to burn pits” (NASEM, 2017, p. 55).

HOME’S COMMUNICATION AND OUTREACH ACTIVITIES

HOME staff includes communications specialists who have developed communication strategies for military exposures (VA, 2022a). The strategies address a wide range of target audiences and military exposures such as Gulf War veterans and Agent Orange, respectively.

After the 2016 communication strategy (reviewed in the initial assessment report), HOME subsequently developed a new communication strategy for military exposures, the HOME Broad Communications Plan, that includes airborne hazards and burn pits (see annex at the end of this chapter following the reference list for the complete HOME communication plan). The updated strategy aims to promote news and information about military environmental exposures and the HOME Epidemiology Program to veterans and other interested stakeholders, and to encourage veterans to learn about and connect with the six registries in the environmental health registry program via VET-HOME (Veteran Environmental Team Health Outcomes Military Exposures). The HOME communication plan contains many of the elements of an effective communication plan identified earlier in the chapter, but it provides few details on specific communication channels, purpose, metrics, or a timeline for dissemination. VHA is establishing the VET-HOME call center to assist with scheduling and coordinating the AH&OBP Registry health evaluations; it is expected to be operational by October 2022 (VA OIG, 2022). Although the committee was not charged with nor constituted to review the new HOME communication strategy, a thorough assessment of it would include an evaluation of the mission, vision, target audience, goals and objectives, key messages, communications channels and tactics, and evaluation methods as laid out in the strategy. At the time this report was written, HOME was also seeking to expand its communication team by hiring two new staff, a risk specialist and a communications specialist (VA, 2022a).

VA’s current communication plan addresses broadly all military exposures, not just airborne hazards and burn pits; VA has stated that its communication goals for the AH&OBP Registry highlight the fact that participation in the registry is not limited to veterans who were exposed to burn pits, and it encourages veterans who had other airborne hazard exposures, such as to oil-well fire smoke or particulate matter, to participate in the AH&OBP Registry (VA, 2022a). VA communication activities include the dissemination of information and educational materials to registry participants, other stakeholders, health care providers, and researchers.

In the sections below, the committee examines how VA, HOME, and AHBPCE disseminate information about the registry and considers a qualitative assessment of HOME’s messaging regarding the registry. The committee then discusses HOME’s communication and outreach activities for the AH&OBP Registry directed along the following paths:

• From VA to veterans and service members about the AH&OBP Registry, including how to register and the benefits of registering (to meet the mandates of PL 112-260);
• From VA to registry participants, including periodically notifying them of significant developments in the understanding and treatment of conditions associated with exposure to toxic airborne chemicals and fumes caused by open burn pits;
• From VA to both VA and non-VA health care providers;
• From registry participants to VA; and
• From VA to other stakeholders, including the families and caregivers of registry participants, the general public, Congress, nonparticipant veterans and service members, and the media.

Dissemination of AH&OBP Registry Communication Products

AH&OBP Registry information is disseminated in a variety of ways, including GovDelivery announcements, HOME’s biannual Military Exposures & Your Health newsletters (e.g., a recent article, “Allergic Rhinitis and Findings from Burn Pit Registry Participants”), emails to internal stakeholders including environmental health coordinators and clinicians, regular calls with environmental health coordinators and clinicians, and materials on the Internet and VA intranet. HOME uses several online media platforms and formats for AH&OBP Registry outreach activities. These include both VA-owned communication channels and paid advertising on commercial digital platforms and other media services. VA-owned communications channels include multiple VA.gov websites, some of which are entirely focused on the AH&OBP Registry; blogs, including VAntage Point, the official blog of VA (VA, 2022b); newsletters; podcasts; and factsheets. The registry was showcased on VA’s Borne the Battle podcast in March 2020 (VA, 2022b). Many of the communication and outreach materials prepared and distributed by HOME also provide information about airborne hazards and burn pit exposures to other stakeholders, including potential participants, health care providers, and the general public.

VA collects data about the registry’s presence on social media, including Facebook and Twitter, primarily using the number of social media hits during the advertising campaign. The most recent (as of March 22, 2022) VHA Facebook posts on the registry were on July 7, 2021 (sharing registry video; 2 comments, 11 shares, 11,000 views), July 5, 2021 (sharing registry video; 24 shares), February 12, 2021 (34 comments; 84 shares), and March 13, 2020 (29 comments; 65 shares) (VA, 2022a). VA reported that in 2018 the webpages for the AH&OBP Registry and for burn pit exposures were, respectively, the third and sixth most visited VA websites on military exposures (VA, 2020a).

Responsibility for the AH&OBP Registry operations and data management has recently moved from HOME to AHBPCE. AHBPCE, a part of the VA War Related Illness and Injury Study Center (WRIISC), is also engaged in education and outreach activities. These include webinars on airborne hazards and burn pit exposures for the general public and community providers, on-demand web-based accredited training for VA and community providers, presentations at scientific meetings, and collaborations with veterans and VSOs (VA, 2022c). For example, WRIISC hosts periodic public webinars, such as one that explains what airborne hazards are, how service members might have been exposed to them (i.e., eligible locations and conflicts), the potential health effects that might result from those hazards, how to join the AH&OBP Registry, and how veterans and service members might handle common symptoms associated with exposure to airborne hazards (WRIISC, 2022). Over 500 veterans and others participated in the February 2022 webinar (WRIISC, 2022). The chat function in the webinar is one of the few ways by which veterans can inform VA about their concerns regarding the registry and exposures to airborne hazards, and use of the chat function is not limited to registry participants.

Assessment of the AH&OBP Registry’s Messaging

Studies have shown that website design characteristics affect user evaluations of online service quality (Hausman and Siekpe, 2009; Montoya-Weiss et al., 2003). HOME received congressional funding to improve the AH&OBP Registry in 2018 and elected to do so by enhancing the registry’s website and communication products

with the stated goals of making the website easier to navigate and encouraging veteran and service member participation.

In 2020, VA awarded a contract for this work. Enhancement activities were informed by a qualitative assessment of registry communications products and outreach channels. The assessment was based on 12 in-depth interviews (VA, 2020b) and 6 focus groups questioning another 42 veterans and service members (VA, 2021a,b). Interviewees and focus group participants were individuals who had engaged with the registry questionnaire (completers and partial completers) and those who had not. They examined HOME’s web, print, and digital ads and video communications products. Based on feedback from the assessment participants, changes were made to the registry’s website on airborne hazards and burn pit exposures, and an advertising campaign with paid messages on Facebook and Google Ads was conducted. The changes are intended to provide clear messaging about HOME’s view that the registry’s role is to support research, health care, and the disability claims process (VA, 2020b, 2021a).

Assessment participants said that the most effective registry communication products did the following:

• used images of what were perceived to be authentic people who may be affected by the registry (e.g., service members wearing uniforms);
• avoided creating flashbacks to being in theater or “triggering” posttraumatic stress disorder;
• stated the registry goals clearly and concisely;
• explained, with brevity and in accessible language, how the registry might benefit veterans (e.g., helping other veterans); and
• were explicit about what joining the registry would not accomplish (e.g., would not help with enrolling in VA health care).

The assessment found that some of the inherent problems of the AH&OBP Registry, such as selective participation bias, might be mitigated by changing the messaging or targeting it to a broader audience, such as eligible individuals who were potentially exposed but who are not currently experiencing adverse health outcomes, or those who were exposed to airborne hazards other than burn pits. Improved messaging, along with providing incentives to respond to solicitations to join the registry, might improve the registry representation of all eligible veterans and service members (VA, 2020b). The assessment also recommended improving veteran outreach and engagement by using real veteran messengers; engaging partners and champions, such as DoD, VSOs, influencers, and others; and conducting continuing education and outreach to VA health care providers (VA, 2021a,b). Assessment participants also indicated that a more personal touch would be helpful for assistance with completing the questionnaire; that is, having a person to call or a chat icon on the website to receive immediate assistance would be preferable to simply giving a phone number for a help desk. A further recommendation was that VA help veterans with cognitive impairments or other disabilities to complete the registry questionnaire (VA, 2020b). Finally, the assessment recommended that future focus groups provide feedback on any new materials developed for the registry.

To address these recommendations, VA revised the airborne hazards public health website, created new factsheets, wrote new blog posts and articles for VA-owned communication websites, sent messages over VA-owned social media, and sent emails about the AH&OBP Registry. After a VA advertising campaign on Facebook and Google Ads, there was an increase in new registry participants. VA reported, there was “an increase in new registry participants, including a 44% increase in January 2021 compared to January 2020, and a 63% increase in February 2021 compared to February 2020” (VA, 2022a). In 2022, VA awarded a contract to conduct interviews with additional veterans to get their feedback on the registry questionnaire and how to improve it.

The committee notes that the VA websites for public health, military exposures, and airborne hazards and burn pit exposures, including the webpage for the registry, are passive and require veterans or other users to search

the websites for new information as it becomes available. Furthermore, HOME uses primarily government sites and channels to reach veterans and registry participants, which requires that they already be familiar with or on those channels, but not all veterans may have access to or use the Internet. For example, VA recently approved presumptive service connections for three health conditions associated with exposure to fine particulate matter. HOME notified all registry participants about the new service-connected presumptions via email and “broadly advertised . . . through numerous newsletters and other methods of messaging Veterans. This appeared in VSO and popular media also” (VA, 2022d). HOME did not do similar messaging for the other recent presumption for nine rare cancers (VA, 2022d).

Veterans who are experiencing poverty, are older, or who live in rural areas may be especially unlikely to have broadband Internet access at home (FCC, 2019). For participants who might not have Internet access, outreach activities could include mailed notices, radio or television announcements, or even in-person meetings, whereas a campaign to reach those with Internet access may focus on targeted messages for smartphones or social media. Contact information for registry participants, particularly those who are VHA users, should be readily available in the veterans’ administrative records and could be used to send hardcopy information to the veterans at their preferred addresses.

COMMUNICATIONS AND OUTREACH FROM VA TO POTENTIAL REGISTRY PARTICIPANTS

In compliance with PL 112-260, VA and DoD initiated a public information campaign for the AH&OBP Registry after it was established in 2014. The campaign had two goals: to raise awareness of and participation in the registry among veterans and service members and to inform VA staff so that they might encourage veterans to enroll in the registry. This communication strategy for the campaign included engaging VSOs, VA public affairs officers, VA environmental health clinicians and coordinators, and VA Operation Enduring Freedom/Operation Iraqi Freedom/Operation New Dawn program managers (VA, 2016); a social media presence; and other types of electronic notifications. VA medical centers and facilities received factsheets and postcard-sized flyers about the registry for distribution to veterans. HOME has stated that it has “tried to keep the information on [the AH&OBP Registry] relevant to how and why to join the registry in that we only have one page to communicate with the Veteran” (VA, 2022d).

Following the initial assessment of the AH&OBP Registry in 2017, HOME has attempted to reach a broader audience of veterans and encourage their participation. The main goal of these outreach activities, such as the VAntage Point blog, is to maximize registry participation—rather than to communicate pertinent information to those who have already enrolled—and to encourage greater participation of “healthy” eligible veterans and service members, including those who were exposed to airborne hazards other than open burn pits. HOME tracks participant enrollment as a measure of outreach success (VA, 2022a). In 2021 there were 54,695 new participants (see Table 7-3), and a similar number are anticipated for 2022. VA expects that at some point the number of new participants will plateau, “since eligible veterans may choose not to join the registry for a variety of reasons” (VA, 2022a).

Because HOME gauges the effectiveness of its outreach activities by increases in registry participation (VA, 2022a) rather than feedback from recipients as to the value of those communications, it is difficult for the committee to evaluate what, if any, HOME outreach activities are most effective in reaching registry participants or of value to them. Selected examples of HOME outreach activities to encourage registry participation in 2020–2021 are given in Box 9-1. After the website revisions discussed in the previous section were complete, one noticeable

change was that the rolling live number of registry participants was removed from the main registry webpage and is now located at the bottom of the Help tab, making it very difficult to find. As veterans are encouraged to join the registry in part to help other veterans, the committee believes that prominent display of the ever-growing number of registry participants, such as in the banner on the registry’s home page, may be an incentive for some veterans to participate.

The AH&OBP Registry website contains a description of the registry and the optional health evaluation, eligibility requirements, and instructions on how to participate as well as VA’s explanation of why joining the registry is beneficial not only to the individual veteran but to his or her fellow service members or veterans. The website has links to several factsheets, including: 10 Things to Know: Airborne Hazards and Burn Pit Exposure (undated) under Resources, which encourages participation in the registry (also available in Spanish); the two-page Health Care Options for Airborne Hazards and Burn Pit Exposures factsheet, which highlights joining the registry and getting care for any health conditions (also available in Spanish); and the two-page VA Airborne Hazards and Open Burn Pit Registry Quick Reference Sheet from January 2021, which also explains the process for registry participation (VA, 2022h).

The VA MyHealtheVet website also has information about the AH&OBP Registry on its In the Spotlight page. As veterans use the same credentials to access both the registry and the MyHealtheVet websites, this is an advantage and may encourage veteran awareness of and participation in the registry (VA, 2021a).

Since 2018, DoD has encouraged participation in the AH&OBP Registry as part of its Transition Assistance Program which informs service members who are separating from the military about the availability of the registry and educates them about other military-specific exposures they may have experienced (VA, 2020a). In the spring of 2020, DoD sent 800,000 letters to eligible active-duty, reserve, and National Guard members to invite them to participate in the AH&OBP Registry. This outreach effort resulted in a substantial increase in the number of service members showing an interest in the registry in the next month or so after the letters were sent (VA, 2020a). In addition, all active-duty service members receive reminders about joining the registry at least once a year in their leave and earnings statements, which typically results in an increase in the number of service members joining the registry (VA, 2020a). VA is also using MyPay pay notifications, which go to both veterans and active-duty service members, to make them aware that the eligible countries of service for the AH&OBP Registry has been expanded to include Syria, Uzbekistan, and Egypt; this information is also being conveyed via VA press releases and on HOME’s website (VA, 2021c, 2022g).

2021d). More recently, VA has sent electronic messages to all AH&OBP Registry participants about steps they can take to protect themselves from COVID-19 and how to access VA health care for COVID-19 (VA, 2020a).

HOME also uses public service announcements, posters, flyers, and various in-person events to reach veterans concerned about military exposures. Effective August 5, 2021, 38 CFR 3.320 established a presumptive service connection for three chronic respiratory conditions related to fine particulate matter exposure: asthma, rhinitis, and sinusitis or rhinosinusitis (Federal Register, 2021), and on April 26, 2022, VA announced that nine respiratory cancers are also presumed to be service-connected as a result of military exposures to fine particulate matter (Federal Register, 2022). VA indicated that it notified all registry participants via email about the new respiratory presumptions and broadly advertised all the new presumptions through numerous newsletters and other methods of messaging veterans (VA, 2022d). The webpage on airborne hazards and burn pit exposures highlights these recent additions of presumptive conditions (VA, 2022e). VA tracks page views on the registry public health webpage monthly (VA, 2022a). Most of VA’s communications regarding airborne hazards, including burn pits, are passive and can be found on the registry’s website; however, VA periodically sends messages on important topics and activities to registry participants.

Other communications from HOME include periodic updates on new research findings regarding health conditions related to potential exposures from deployment to Southwest Asia. For example, the AH&OBP Registry webpage on Research briefly describes AHBPCE and has a section “Understanding the Science of Airborne Hazard Exposures” (VA, 2022g). The section makes it clear that burn pits are not the only source of airborne hazards and that other exposures, such as particulate matter, smoke from oil-well fires, and fuel exhaust, are also considered to be hazardous. A related VA public health webpage covers a number of military and specific deployment exposures such as radiation, occupational exposures (e.g., asbestos), and chemical warfare agents (VA, 2022h).

VA has expanded the registry website with links under an “Explore” menu on the main registry page. These links include one titled “How to Get Care” that goes to a webpage with additional links to assist registry participants with filing a VA benefit claim, applying for VA health care, and contacting the closest VA facility’s environmental health coordinator (VA, 2022i). The “How to Get Care” page emphasizes that a veteran does not need to file a claim or participate in the AH&OBP Registry in order to receive care from VA and that certain veterans are eligible for VA health care for 5 years after separation from the military. (PL 117-168 extended the eligibility period for VA health care to 10 years after separation.) Similar information is also available from the Health Care Options Factsheet on the registry website under Resources (VA, 2022j).

VA also communicates with registry participants about the registry’s optional health evaluation. Follow-up messages and reminders are sent to participants who have completed the questionnaire to encourage them to schedule the optional health evaluation (details of the optional health evaluation are covered in Chapter 7). Every month, HOME sends a physical letter (along with the Health Care Options Factsheet) to all registry participants who joined that month to welcome them to the registry, provide links to additional information, and encourage them to request the optional health evaluation (VA, 2021e); an electronic version of the participant letter is available to all new registry participants when they complete the questionnaire. However, in the recent VA Office of Inspector General report on the AH&OBP health evaluation process, VA acknowledged that the participant letters were not always sent to new registry participants and that new participants may not realize they need to open the participant letter to obtain additional information about receiving the optional health evaluation (VA OIG, 2022). The AH&OBP Registry annually emails veterans and service members through the messaging system in the portal to update their contact information; however, VA acknowledges that such messages will not reach a participant if his or her email in the portal was changed (VA, 2021a).

COMMUNICATIONS AND OUTREACH FROM VA AND DOD TO THEIR HEALTH CARE PROVIDERS AND OTHER COMMUNICATORS

In addition to encouraging potential participants to join the AH&OBP Registry and providing current registry participants with a variety of information, HOME and AHBPCE also communicate with VA and, potentially, DoD

health care providers. In February 2020, VHA released a four-page Clinician’s Guide to Airborne Hazards that is intended to provide VA clinicians with talking points when seeing a patient who has requested a health evaluation after completing the AH&OBP Registry questionnaire (VA, 2020c). The brief guide provides information on the AH&OBP Registry, conducting the health evaluation, and referring patients for specialty evaluations and consultations at WRIISC or elsewhere. It also gives a very short synopsis of the 2011 National Academies’ report on burn pits (IOM, 2011) and refers providers to AHBPCE for more information. Other materials for clinicians seeing veterans with military exposures are available from the VA public health website (VA, 2022g).

One goal of AHBPCE is to “develop best practices and to disseminate education about airborne hazard exposures—for Veterans, their families and their health care providers” (VA, 2022c). As described previously, AHBPCE also provides webinars for VA and community health providers on airborne hazards and burn pit exposure concerns and has on-demand web-based accredited training available for them.

As part of its qualitative assessment of communication and outreach activities, VA published a blog post on VA Insider encouraging VA staff to review the new resources about the AH&OBP Registry and, when appropriate, to initiate conversations about those exposures with veterans. VA staff also received an email message from the under secretary for VHA, regarding the importance of the registry (VA, 2021a).

DoD has extensive materials on its website about the AH&OBP Registry that are intended for an audience of DoD health care providers and communicators (DHA, 2022). Of particular interest is the Airborne Hazards and Burn Pit Registry Communication Toolbox. The resource was developed for military hospitals and clinics, but has broader use, and aims to improve education and consistency of messaging regarding the registry and to encourage participation. The outreach materials in the toolbox include key messages about the registry, standard background language to use when introducing the registry, links to relevant websites, promotional materials such as a poster and video, and outreach and social media materials. Other materials on the site include a user’s guide for participating in the registry, and a guide for DoD health care providers; sample messages about the registry for social media sites (Facebook, Twitter, and Instagram); and various educational graphics about the registry to be used for newsletters, posters, and other activities (DHA, 2022).

The DoD health.mil website for the registry also contains a DoD Clinical Toolbox (June 2022) intended for DoD health care providers who conduct registry health evaluations (DHA, 2022). The DoD Health Care Provider Guide to the Airborne Hazards and Open Burn Pit Registry (June 2022) gives DoD health care providers a brief overview of the registry and addresses how to talk to service members who are receiving the registry health evaluation. Many of these materials are publicly available on either VA or DoD websites and thus are accessible to any provider.

COMMUNICATIONS FROM REGISTRY PARTICIPANTS TO VA

Since establishing the Agent Orange Registry for Vietnam veterans in 1978, VA has used exposure registries as the primary mechanism by which veterans can self-report detailed histories of their deployment exposures and their health concerns. Inbound communications to the AH&OBP Registry consist primarily of questionnaire responses from participants.

VA states that “the most important way to contact participants is by email” (VA, 2022a). VA is exploring ways to allow veterans to update their email through the VET-HOME call center rather than having to go into the registry portal to make the change (VA, 2022a). Registry participants cannot alter any information they report on the questionnaire other than their contact information and new eligible deployment segments, which precludes them communicating any new health or general exposure information to VA.

AHBPCE is responsible for much of the individualized inbound and outbound information-sharing with veterans, environmental health clinicians, and primary care providers. VA indicates that AHBPCE collects “feedback to the point that it can characterize trends and areas that could use improvement” (VA, 2022a); however the committee

is unclear how, other than contacting the help desk for technical questions regarding access to the registry portal and questionnaire, veterans can provide feedback to AHBPCE or HOME.

VA reports that it receives feedback from veterans who have questions and technical obstacles when they enroll in the registry, but no further information was provided on how this feedback occurs or what the messages were (VA, 2022a). On the registry homepage (VA, 2022e) there is a Help tab that sends the user to a page with the registry help desk number and other support materials, such as a link to the registry user’s guide (VA, 2022f). The registry questionnaire itself and the registry homepage do not contain any mechanism (e.g., comment box or open text fields) for participants to notify VA of any concerns they have that are not captured by the questionnaire.

The committee recognizes that HOME has recently made efforts to assess and improve communications to and from potential registry participants. As far as the committee is aware, the interviews, focus groups, and qualitative assessment was the first such effort to improve communication and outreach in order to enhance registry participation. While the committee commends HOME’s efforts, it is critical that it conduct an ongoing evaluation of the impact and durability of its success in increasing registry participation and to periodically review its communication and outreach materials and methods.

Despite these efforts, there is a continued lack of any formal mechanism by which HOME or AHBPCE can learn of any existing or longitudinal health concerns that veterans and service members might have with regard to airborne hazards and burn pit exposures. Furthermore, since its inception—with the exception of the recent small qualitative assessment—VA has not actively queried veterans (participants and nonparticipants) about their health care needs, how the registry might best serve them, how it might be improved, or what information from the registry or about their exposures to airborne hazards they would find most helpful. A periodic feedback opportunity might empower registry participants to learn more about their exposures and encourage nonparticipants to join the registry.

Exposure registries, including the AH&OBP Registry, can have value to veterans as a means to communicate their experiences with and concerns about their military exposures to VA and for VA to acknowledge those concerns and experiences and use them to inform its communication and outreach activities. However, at present communications from registry participants to VA are limited to their responses to the questionnaire.

There is value in creating a roster of concerned individuals so that VA can disseminate information on new health and benefits information to them. The initial assessment committee found that “VA post-deployment health registries are primarily useful as a mechanism to create a roster of concerned individuals and provide outreach and health risk communication to potentially exposed and concerned veterans” (NASEM, 2017, p. 38). The reassessment committee concurs with this finding that the AH&OBP Registry, as with other VA post-deployment health registries, is primarily useful as a mechanism to create a roster of concerned individuals and to provide bidirectional communications with registry participants. However, requiring that the participants complete the lengthy registry questionnaire is neither necessary nor recommended for this function.

of. Registry staff state that such input is an important source of inspiration for more in-depth studies (Farfel et al., 2021).

INITIAL ASSESSMENT RECOMMENDATION

The initial assessment committee (NASEM, 2017) made one recommendation that pertained to VA communications and outreach regarding the AH&OBP Registry. Below is that recommendation, VA’s verbatim response to it, and the reassessment committee’s consideration of whether VA’s response was adequate.

Initial Assessment Recommendation: The committee recommends that VA’s messaging be explicit about the limitations on the ability of the AH&OBP Registry to generate valid information that can be used to improve VA health and benefits programs or to inform treatment of individuals potentially exposed to burn pits or other airborne hazards in theater in order to ensure that participants and others do not form unrealistic expectations about the value of participation or the capabilities of the registry.

VA Response: The outreach efforts noted above have included information described in this document (PDHS, 2020). This candid messaging may have dissuaded eligible service members and veterans from joining the registry without evidence of a clear personal benefit. Examples of the messaging provided can be seen in the two videos that can be found at https://www.youtube.com/watch?v=Yrl63ipqZ5M.

Reassessment Committee Response: VA did not respond adequately to this recommendation. While the committee recognizes VA’s desire to feature appealing aspects of enrolling in the registry, it finds that VA’s current messaging about the registry is, in some cases, inaccurate. For example, the registry’s website continues to say that the registry helps “put data to work for Veterans through research about potential health effects of airborne hazard exposures. By joining the registry, you can provide information to help us better understand whether long-term health conditions may be related to these exposures” (VA, 2022g). However, VA offers no evidence that the registry has indeed enhanced understanding of long-term health conditions related to airborne hazards and burn pits exposures, or that candid messaging about the limitations of the registry may have dissuaded any veterans from joining it.

SYNOPSIS

PL 112-260 § 201 requires that VA “(C) develop a public information campaign to inform eligible individuals about the open burn pit registry, including how to register and the benefits of registering; and (D) periodically notify eligible individuals of significant developments in the study and treatment of conditions associated with exposure to toxic airborne chemicals and fumes caused by open burn pits.” Although VA has made some efforts to meet the mandate to inform eligible individuals about the registry, it has not, for the most part, been proactive in informing eligible individuals about research developments, the treatment of conditions associated with exposure to airborne hazards, or about new programs and benefits designed for them. Furthermore, with the exception of responses to the questionnaire, registry participants have no mechanism to communicate with VA. The majority of communications between registry participants and VA are unidirectional, that is, from VA to participants. Not only should VA inform current and prospective participants about the registry and why they should enroll (as required by law)—for example, to learn about new service connections or health findings—but participants also need a mechanism to inform VA about their concerns as well. Such feedback could help VA tailor its messages to address those concerns.

A registry’s communication and dissemination activities can reach a large audience and be of value to participants. VA communication activities include the dissemination of information and educational materials to registry participants, other stakeholders, and health care providers, using a variety of communication channels ranging from hardcopy letters and VA websites to social media (e.g., Facebook and Twitter) and blogs. However, the value of these materials for registry participants is unclear. VA has made no attempt, other than a qualitative assessment

of very few registry participants and nonparticipants, to determine whether recipients find them informative or worth the effort of joining the registry.

Some exposure registries, such as the WTCHR, have comprehensive communication strategies and structures to reach and maintain contact with their target audiences over the lifespan of the registry. Registries may have periodic, scheduled communication activities to inform participants and other interested stakeholders about research, other activities, benefits, or other relevant information. However, it must be noted that a registry is not itself a study or evidence or a social media platform, nor is it a forum for communication among participants.

To date, over 317,000 veterans and service members have enrolled in the AH&OBP Registry with the expectation that the information they provide on the registry questionnaire will be used for research on the health effects associated with deployment exposures, which, as described in Chapter 5, it cannot do. VA’s initial communication strategy for the AH&OBP Registry was developed 2 years after the registry launched and was initially focused on promoting awareness of and participation in the registry. HOME’s updated communication plan addresses all six of VA’s exposure registries and focuses on becoming a trusted source of information on military exposures. The plan is vague as to the purpose and timelines for disseminating information to participants or other stakeholders as well as the metrics to be used to assess their value.

HOME has indicated that it continues to evaluate the effectiveness of its communication and outreach activities by the number of new registry participants. There is little communication to registry participants to highlight how their information is being used to benefit themselves or their fellow veterans. Although HOME posts a variety of information on deployment exposures to its website, it is unclear whether the registry is used to send electronic or printed materials directly to participants on a regular basis. VA has the ability to send automated or other ad hoc communications to registry participants using selected filters or criteria as appropriate for a particular communication, as in the email that was sent to registry participants to inform them of the new presumptive service connections for three respiratory conditions. VA has also sent targeted messages through the registry portal to respondents who have begun but not completed and submitted the questionnaire. However, with the exception of information on COVID-19 awareness and the three new presumptions, the committee is aware of little other information that has been pushed out from HOME or AHBPCE to registry participants regarding their deployment exposures or health outcomes.

Many veterans who participate in VA’s registry programs provide their contact information so that they may be kept up to date about “significant developments in the study and treatment of conditions associated with exposure to toxic airborne chemicals and fumes caused by open burn pits” as required by PL 112-260. Periodically, VA sends emails to registrants asking them to review and update any contact information in the AH&OBP Registry portal. Although participants can change their contact information, they are unable to select more than one method (electronic, U.S. mail, other) of receiving information from VA about the registry or to change that selection once the questionnaire is submitted. Contact information for registry participants, particularly those who are VHA users, should be readily available in a veteran’s administrative record and could be used to send hardcopy information to veterans at their preferred address.

There is value in creating a roster of concerned individuals so that VA can disseminate information on new health and benefits information to them. The initial assessment committee found that “VA post-deployment health registries are primarily useful as a mechanism to create a roster of concerned individuals and provide outreach

and health risk communication to potentially exposed and concerned veterans” (NASEM, 2017, p. 38). The reassessment committee concurs with this finding that the AH&OBP Registry, as with other VA post-deployment health registries, is primarily useful as a mechanism to create a roster of concerned individuals and to provide bidirectional communications with registry participants. However, requiring that participants complete the lengthy registry questionnaire is neither necessary nor recommended for this function.

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