The most significant policy innovation of recent years for extending community-based care to veterans is the Veterans Affairs (VA) Choice Program, implemented in November 2014 to reduce wait times and travel distances by giving veterans in remote settings access to care from non-VA community providers.1 The Choice First initiative is a modification of the VA Choice Program begun in June 2015 to expand the Program to cover specific, often specialist services not available in VA facilities.2 The reasons for lack of certain local specialized services even when near an accessible VA are the variable numbers of specific subspecialists on staff, fluctuations in demand for specific services, or budget constraints.
During 2014 and 2015, the challenge of treating veterans for chronic hepatitis C virus (HCV) infection provided an important case example of the feasibility and challenges of Choice First. HCV is the most common blood-borne pathogen in the United States with an estimated 2.7–3.9 million people chronically infected3 and is ∼3 times (9.5% vs. 2.4%) more common among veterans in Department of Veterans Affairs (VA) care.4 In fact, the VA has become the nation’s largest HCV care provider.5,6 Although in the past, HCV has been difficult to treat and cure, during the years of VA Choice Program implementation, highly effective, low-toxicity, and easy-to-take directly acting antiviral HCV medications were approved for use.7 But these medications, such as Ledipasvir-Sofosbuvir (Harvoni) while a great leap forward in the treatment of this life-threatening disease, have a retail price of over $80,000 per course, or as often quoted “$1000 per pill.”8,9 At a time of excitement about the prospect of real impact on this important clinical and public health problem, VA liver disease and infectious disease specialty services are struggling to reorganize and expand and find funds to respond to the numbers and complexity of patients needing treatment.
The VA Choice Program allows eligible veterans to receive care, including condition management, laboratory services, and drug prescription, from non-VA facilities and community providers that is reimbursed by the VA. The process starts with VA providers entering consults/referrals to self-enrolled non-VA providers in the Choice Program. Then, veterans work through a third-party administrator to schedule visits with the non-VA provider. Non-VA providers may choose to manage the veteran’s HCV antiviral treatment course (including laboratory and follow-up monitoring) independently; some non-VA providers may manage the treatment course but seek input from VA providers; or veterans may wish to have laboratory monitoring done at a VA medical center and the results would then be transmitted to their non-VA provider.2
We conducted a qualitative study to evaluate the implementation of Choice First as a tool used by the VA to rapidly expand access to expensive, intensive, high-demand specialized care for HCV. There has been little research on veteran experiences with the Choice Program generally, and particularly for HCV treatment. In this study, we examined perspectives and experiences with the Choice Program during the Choice First initiative among veteran patients and their HCV providers at 3 VA medical centers. Results of the study can help guide policies, practices, and research related to the Choice Program for veterans with HCV.
Semistructured interviews were conducted with a total of 38 veteran patients and 10 VA providers who provided hepatitis C treatment across 3 VA medical centers (denoted sites A, B, and C) in the New England region from October 2015 to May 2016. At each site, patients were randomly selected from a master list of all patients engaged in HCV care through the VA or Choice Program; all available VA HCV providers were invited to participate. All patients interviewed had current or previous HCV diagnoses, and were enrolled in the VA system. Site A included 20 interviews (17 patients and 3 providers), site B included 16 interviews (11 patients and 5 providers), and site C included 12 interviews (10 patients and 2 providers). Across the 3 sites, 15 patients were offered treatment, attempted treatment, or were treated through the Choice Program (n=8 from site A; n=3 from site B; n=4 from site C).
Table 1 describes the characteristics of the patients interviewed. There were no significant differences between veterans who used VA-only and those who used the Choice Program for their HCV treatment, except Choice users were more likely to have a mental or substance use disorder diagnosis. The providers interviewed included 5 physicians, 3 pharmacists, and 2 nurses.
In interviews, veterans were asked about their experience with past and current HCV treatment, experiences with the Choice Program, and barriers and facilitators to treatment and completion (see Appendix, Supplemental Digital Content 1, http://links.lww.com/MLR/B350). Providers were asked about their experiences working with the Choice Program, the HCV medication funding shortage during the Choice First initiative, and the HCV treatment process. Interviews were conducted by one of the authors either in-person or via telephone. All patients at site A were interviewed in-person; 6 patients at site B were interviewed in-person and the remaining 5 were interviewed by phone, and all patients at site C were interviewed by phone. Phone interviews were conducted to accommodate patient schedules and reduce inconvenient travel. Each interview took ∼45 minutes, and was audiotaped and transcribed.
These procedures were considered part of a VA quality improvement project, which was deemed exempt from the institutional review boards at all sites involved.
Interview transcripts were analyzed using rapid assessment procedures10 based in grounded theory.11,12 In the first phase of analysis, 3 authors conducted open coding using 5 transcripts, came to consensus with regard to initial codes, and then worked with the larger team through an iterative process of note-taking and discussion to develop a codebook for use with the remaining transcripts. The final codebook consisted of 55 codes, and is available upon request. The remaining transcripts were then divided amongst all 6 researchers for coding. Each of the 38 transcripts was coded by 2 researchers, with 1 serving as the primary coder and members from different locations cross-coding different transcripts to reduce the influence of any 1 member or team. In the final analytic step, codes were refined and consolidated based on emergent patterns in the data. The final themes were derived based on identifying patterns among codes, rereading quotations, and considering frequency of responses.13–15
Table 2 summarizes the 4 main themes that were identified and each theme is described in further detail below.
Theme 1: Difficulties Associated With Third-party Administrators
Under the Choice Program, the VA has contracted with third-party administrators (Health Net Federal Services and TriWest Healthcare Alliance) to approve and facilitate community care. These third-party administrators help with eligibility determination, referrals, medical documentation exchange, authorization invoices, and claims submissions associated with the Choice Program. They serve as intermediaries between VA and non-VA health care providers, and patients. In the New England region, VA facilities have contracted with Health Net Federal Services. However, many patients and providers reported major administrative difficulties with having to work through Health Net to obtain care through the Choice Program, including enrollment, ongoing support, and billing. With Health Net as the go-between, patients and providers described a complex web of communication and contacts, having to talk back and forth between various parties.
Many patients described confusion about eligibility and enrollment for the Choice Program. They noted there were no clear communication channels and that they did not understand the sequence of steps that third-party administrators, providers, and patients were supposed to take. Patients described long waiting periods to be connected to care through the Choice Program, such as waiting for weeks “in limbo with no answers.” Some of this confusion was also due to the fact there was a general Choice Program and a Choice First initiative. Patients had “aggravation” about not knowing if, and when they were approved for the Choice program, and the efforts it took to arrange their first appointment in the community.
It took 3 months for me to get in contact with the Veterans Choice Program and until this day they still haven’t setup an appointment … It is a tremendous waste of money and time, and I mean it seems ridiculous that they should hire a company just to make appointments for vets when they can do it themselves. (Patient)
Many patients described calling Health Net and being frustrated because its operators did not know who they were and had no record of their previous calls, so “every time [they] got a different person, in a different state, there was never any notes from the previous work that [they did].”
You know, I don’t know if anybody else gets any care or treatment or understanding, or I don’t see how you can when there’s a room full of operators. You call in, there’s an operator there waiting. “Oh yeah, we’ll take your call next,” and none of them have any idea who you are. You call back, they don’t know, they go on the computer. “We can’t find it.” If they send it over, I go to [my VA provider] she said, “No, we sent everything over. They should have all of your records and all of the bloodwork. They should have all of that stuff.” Call them. They don’t know what I’m talking about. I said, “I already gave her all the blood—what the hell are they sending me for more bloodwork for?” (Patient)
VA providers lacked the time and resources to work with Health Net on behalf of patients. The burden fell upon patients to communicate with Health Net to advocate for themselves and to obtain information to share with their VA providers.
Yah, it’s between Health Net and the outside providers, because while I’m going through all of this, the providers don’t know what’s going on, they’re waiting for information … They would come and tell me hey, you know, you got an appointment on this day and we haven’t gotten approval yet so maybe if you push the ball a little bit and call them to see what’s going on. (Patient)
Once appointments had been made and attended, billing issues arose with some patients receiving “stacks” of bills to pay, and the task of trying to be reimbursed for them by the VA. In other instances, patients reported bills being sent to the wrong address or reimbursement going to the wrong community doctor.
Theme 2: Lack of Choice
Both patients and providers described experiences of feeling like they did not have choice or control over their HCV care. The lack of choice existed in several ways— patient choice for VA treatment (VA vs. non-VA), patient choice in non-VA providers, and VA provider burden.
Choice for VA Treatment
During the VA HCV treatment funding shortage, many VA medical centers were offering HCV treatment through the Choice Program in lieu of VA treatment. Most veterans at these facilities did not have the option to receive HCV treatment at the VA although many wanted to.
They said to us that they apologize, but the budget no longer covered this drug, we weren’t going to get it today … The guards were there for people like me who were extremely upset, and I was, extremely angry, you know, I mean you just made me drive an hour and a half up here to tell me that I’m not going to get it! … A bunch of guys just got up in a huff and slammed out of the room, pushed passed security, you know … They were saying that the (Choice Program) was available, and they have a different bucket of money to choose from … but I have absolutely no faith, at this point. (Patient)
As 1 VA provider stated, “I had some people ask me, “Well, where’s my choice? This is a Choice Program and you’re telling me I have to go outside.” So choice is lost there.” And 1 patient reported that it felt like the “VA was trying to kick (them) out.” In contrast, none of the patients who were exclusively using VA HCV care explicitly described wanting the choice to have non-VA HCV care.
Despite the challenges associated with the Choice process, a few patients expressed satisfaction with their Choice experience once they had attended a specialist appointment in the community. For example, 1 patient reported “it was not hard at all … I didn’t even have to make the appointment, my worker made the appointment. As a matter-of-fact, she gave me a choice of 3 doctors.” Another patient reported “they acted just like the VA, they treated me with respect and professionalism and all of that.”
Choice in Non-VA Providers
Among patients who were enrolled in the Choice Program, some described little choice in the location of their non-VA providers. Health Net arranged non-VA provider appointments for patients, but they were not always well-matched.
Ok, they gave me doctor [omitted name] and they said she would give the treatment, well she doesn’t have an office, ok? She’s a traveling doctor, she has no specific place she sits, she’s constantly in transit. So that was the first one, ok so for me to get that squared away, then they gave me a doctor [omitted name] and he wasn’t taking customers, and then they gave me a doctor [omitted name], and when I saw the phone number with the area code, I knew there was something wrong. It turns out that it was in (distant state hundreds of miles away], his office, so that was a little hard for me to get to him. (Patient)
The lack of non-VA providers in certain areas may also have been due to the amount of VA paperwork required for approval to become a Choice provider, and if approved, low reimbursement rates.
You know, a couple of our providers that we know have said I’m not ever taking care of another veteran. One guy that I’ve known for years, he had so much trouble with labs, and with paperwork, and with all kind of things, that he’s like it’s just not worth my time. And another provider that I asked to consider being a Choice provider, you know went onto the Health Net [web-]site, looked at the type of paperwork that was required, and he was like, there is just no way, you know, I’d have to hire somebody, I’m not going to do this. So I think until the process is streamlined with Health Net, very few private providers, would sign up to do this, especially because the reimbursement rates are not superlative. (VA Provider)
VA providers described feeling like they had no choice but to take on the extra workload of working with the Choice Program to help their patients.
The con is the administrative nightmare of trying to keep up with this workload that is not included in our workload. So we’re here, we each have our position of what we’re here for, all of these 40 plus patients that I am working on. They don’t count that we’ve taken care of them, in our credit, so it’s really sad, so, you know, Choice has not figured out how to let us also, I mean, we’ve seen these patients, we’ve worked them up, really all that’s happening is that they’re getting their prescription on the outside, we’re trying to follow-up with our veterans afterwards, we want them as safe as possible, you know, we’re trying to work with the providers in the community.(VA Provider)
Theme 3: Fragmented Care
There were coordination challenges due to fragmented care between VA and non-VA providers. HCV care through the Choice program was fragmented in that some care was provided by the VA and other aspects of care were provided by non-VA providers. For example, patients were evaluated for treatment in the VA, then sometimes had duplicate evaluation examinations and tests from community providers. Once patients were deemed eligible for treatment, prescriptions were written by non-VA providers and then patients had to pick up their medications at their usual VA location. There were complications with sharing medical records and tests, and there was no systematic process for VA and non-VA providers to communicate. Some patients who only used VA HCV care also reported fragmented care, but mostly between their VA primary care and HCV specialty providers and to a much lesser degree than those involved in the Choice Program. Various challenges arose in the Choice Program around sharing medical records, prescription delays, and working with the Choice Champions (ie, designated VA staff trained on the Choice Program).
Sharing Medical Records
Because some patients received services from VA and non-VA providers, it was important for medical records, test results, and ongoing treatment regimens to be shared among providers. However, many VA providers described barriers to sharing medical information with non-VA providers.
The community doc is totally unaware of all these documents in DOMA [a medical record retrieval system], they don’t read them, they don’t get to the bottom line, and we’re very careful about our bottom line. We say the FibroScan score is this, the labs are this, we recommend this regimen, you know, but that’s like at the bottom of a stack of a thousand pages … (VA Provider)
Several patients complained about having to pick up their medications from the VA pharmacy although they were seeing a non-VA provider for their HCV care. Other patients described being told they could have their medications mailed to them only to later find out that it could not be mailed to them due to the high cost of the medications. As 1 patient said, at times, it felt like “one hand didn’t know what the other one was doing.”
So there has been just problem after problem. The last 4 patients who clocked in their prescriptions took anywhere from 1 hour to 10 hours to actually get them a prescription, so multiple issues. Pharmacy has not been able to reach Choice, we don’t have a Choice Champion … (VA Provider)
At VA facilities, it is policy that there is a Choice Champion, that is a staff member who has received specific training on the Choice Program and served as the contact person for questions about the program for patients and providers. Several VA providers described not knowing who their Choice Champion was, and those who did described not having a strong partnership with the Choice Champion.
Our Choice Champions are actually non-clinicians. So when we had problems with medical records not going to the Choice provider, since they’re non-clinicians they don’t know what they are. You know, what an ultrasound means, what are labs, and all this sort of thing. Maybe they need to be a little, I don’t know, maybe we need some clinicians to be Choice Champions. (VA Provider)
Theme 4: VA Provider Reservations About Community Providers
VA providers felt personally responsible for the care and well-being of their patients. Several providers described relationships that spanned many years, including multiple failed HCV treatment attempts in the past. Some VA providers suggested that patients’ psychological readiness and organizational skills should be considered when considering them for Choice care in the community.
It is very different for a 70-year-old veteran, who’s been retired, and basically knows how to get to [here] and home again and does not want to be traveling anywhere else … It is very difficult when we have to tell them that this is the option, you know, in order to be treated. (VA Provider)
Unique Needs of Veterans
VA providers expressed some caution about sending patients to the Choice Program because they believed that some community providers did not have the specific experience required to treat more advanced cases of HCV.
Community GI docs are not very experienced in treating HCV … Cirrhotic patients, they’re frightening to private providers, they’re time-consuming, and God forbid they decompensate because then they don’t know what to do so I’m very reluctant to send a cirrhotic out for Choice. (VA Provider)
Some providers were also concerned that non-VA providers did not have expertise to manage common veteran comorbidities, such as mental illness, substance use disorders, and traumatic brain injury.
Many veterans actually have other problems that can be difficult in a community setting, especially if they have PTSD … we have a fairly high tolerance for depression … and I don’t think community providers who are doing HCV treatment do. This is not their population. (VA Provider)
The VA Choice Program represents a new option of health care for many veterans and has the potential to increase access to HCV treatment for the over 100,000 VA service users who need it.6 However, our study identified several areas that need to be considered in the continued operation of the Program. To provide context for the study, it may be important to note that this study occurred at the confluence of several prominent events: the introduction of highly effective, but expensive HCV drugs; the creation of the Choice Program; a funding shortage for HCV drugs and creation of the Choice First initiative. In addition, while we specifically examined the Choice Program during the Choice First initiative as it applied to veterans needing treatment for HCV, some of our findings may provide lessons for the broader policies relevant to designing community-based specialist services for needy veterans. Our study yielded several findings with practice and policy implications.
First, there were major care coordination challenges that were reported about the Choice Program when accessing outside providers for HCV treatment. Some of these challenges seemed to be related to the deficiencies of third-party administrators, whereas others were related to the lack of formalized communication channels between VA and community providers resulting in fragmented care. The VA has offered fee-for-service or contracted care with outside providers for over a decade for certain health care services without third-party administrators.16 Clearly, the Choice Program provides veterans availability to outside providers on a much larger scale, but we found that the use of third-party administrators may have also led to more complications in care coordination. These care coordination challenges should be carefully examined in the Choice First Program for HCV, but also more broadly as there are ongoing proposals, such as the one by the VA Commission on Care to expand community care.17
Fragmented care between VA and community providers has long been a concern18–20 because veterans often utilize care in multiple health care systems under different forms of coverage (eg, private insurance, VA, Medicare, Medicaid) and there is no common electronic medical record system shared between systems. Our study highlights this issue as VA providers reported difficulties informing community providers and being informed of the care their veteran patients were receiving. This is not the first time expansion of non-VA care has increased the complexity or fragmentation of care, which has been observed in the rollout of Medicare Part D,21 implementation of the Affordable Care Act,19 and numerous studies of dual use of Medicare and VA services.19,22 Providers in our study emphasized the need for “some sort of platform for communication” and suggested improved technologies, such as being able to make comments on medical records that can then be shared between providers. Other ways to enhance communication between providers should be explored.
Despite the program’s namesake, many veterans reported feeling like they had “no choice” in various aspects of their HCV care. This is particularly important because the VA has become increasingly focused on providing patient centered care.23 There is a body of literature demonstrating the value of educating patients, providing them with treatment options, and involving them in the decision-making process for their care. This shared decision-making can lead to increased treatment adherence, greater satisfaction with care, and better clinical outcomes.24–27 Our study suggests that veterans with HCV care through the Choice Program sought more shared decision-making opportunities.
Finally, greater efforts may be needed to establish a more extensive network of community providers that veterans can utilize for their HCV care. We found that not only did veterans report a lack of community providers, but VA providers had reservations about existing community providers which suggests a need to incentivize enrollment of a greater number of reliable and experienced community providers for the Choice Program. Special training and education for community providers may also enhance comfort and knowledge with working with veteran populations. This study did not specifically examine rural areas, but there may need to be special attention to the number and quality of community providers in rural areas as the VA continues to strive to increase access to care in these areas.28,29 Finally, results of this study may inform development of performance metrics and quantitative measures to assess coordination and quality of care being reimbursed by the VA.
Several limitations of this study are of note. First, findings were based on participants from 3 VA medical centers in a single region and may not be representative of veteran experiences in other regions. Given differences in funding, patient inflow, treatment protocols, and geography, VA medical centers likely differ in how they use the Choice Program. Second, qualitative interviews were conducted both in-person and by telephone, and it’s not clear whether the modality influenced results although it allowed us to interview more patients. VA administrators and non-VA providers were not interviewed and their perspectives may have yielded additional valuable information. Third, this study was conducted during the initial years of the Choice Program so there are history effects to consider and the Program may continue to evolve. These study limitations were counterbalanced by the strengths of the study, which included recruitment of participants at multiple sites, inclusion of clinicians and patients as study participants, and findings that have practice and policy implications. Taken together, this study highlights some important experiences in the early years of the VA Choice Program and underscores areas that may need to be further developed. As 1 veteran said, “The program itself is a great concept, it’s a great idea, but sometimes there’s bugs that need to be worked out with anything that comes up that’s new.”
The authors thank Kittichai Promrat, MD for his assistance in recruiting participants at the Providence, VA.