Like other healthcare systems, including health maintenance organizations and state-funded Medicaid programs, VA grapples with finding ways to provide new and costly medications to its patients, such as direct-acting antiviral treatment for chronic hepatitis C virus (CHC) infection. Without treatment, CHC can lead to advanced liver disease, liver cancer, and early death1 – and it is still one of the most common chronic blood-borne infections in the United States.2 Despite the costly CHC medications, VA prioritized treatment and has cured more than 100,000 Veterans with CHC, establishing VA as a global leader in the diagnosis and treatment of the disease.
Democratic Deliberation methods combine education by experts with guided discussion among peers to deliver informed opinions and suggestions to policymakers and other concerned stakeholders. This cooperative process allows participants to respond to–and build on the interests and perspectives of fellow deliberators.
One approach to care is to target costly treatments to the patients most likely to benefit. The use of this strategy for the allocation of CHC treatment is one example. The benefit seems promising, but to maximize the fair use of this approach and likely acceptance of its implementation, the values and beliefs of patients should be considered. Investigators in this study used Democratic Deliberation (DD) methods as a proof of concept for informing policy decisions related to the allocation of scarce resources.
Led by Akbar Waljee, MD, MSc, a core investigator in HSR&D’s Center for Clinical Management Research (CCMR) in Ann Arbor, MI, investigators recruited 30 VA patients to attend a six-hour DD session. Following educational presentations from content experts, Veterans engaged in facilitated small group discussions to: 1) identify strategies to overcome CHC treatment barriers, and 2) evaluate, vote on, and modify/improve two CHC treatment policies – “first come, first served” (FCFS) and “sickest first” (SF). Study participants also completed pre- and post-DD surveys.
is to advance knowledge, promote innovations, and engage in collaborations that will improve Veterans' health. Three current areas of focus include improving access to care, breaking ground in suicide prevention, and shaping opioid prescription guidelines.
Most Veterans endorsed the sickest-first policy over the first-come-first-served policy, emphasizing the ethical and medical appropriateness of treating the sickest Veterans first. When given the option, almost two-thirds of study participants insisted that all Veterans be treated without delay regardless of symptoms or degree of disease severity. Only when required to choose between two policies – “first come, first served” and “sickest first” – did a majority opt for the SF policy (86% before DD session; 93% after DD session).
Small group discussions were guided by trained study facilitators, as needed, but were primarily participant-led, with discussants posing questions to one another and reacting to comments. Although the six small groups worked independently, there was a great deal of commonality on the types of CHC treatment barriers identified. Common themes included:
- Lack of knowledge about CHC and its treatment;
- Difficulties associated with getting tested for CHC and following through with CHC treatment;
- Stigma often associated with CHC, and the effect of that stigma on members of vulnerable populations; and
- Lack of transportation and other difficulties accessing healthcare, including limitations posed by insufficient funding and other resources within the VA healthcare systems.
Veterans discussed barriers to seeking, receiving, and continuing CHC treatment.
“I would think the fact that some people don’t experience any symptoms would be a barrier, so they don’t even know that they have it.” —Study Participant 103
“Yeah, you want to hide, conceal, say, ‘So I’m not going to tell anybody, I’m going to die of hepatitis C and liver cirrhosis. Is shame a possible thing that we wouldn’t, you’d ignore your symptoms and wouldn’t talk to a doctor because you don’t want anybody knowing what your past … possibly?” —Study Participant 101
“We had people dropping out. One guy dropped out. He didn’t want to quit drinking. The other people dropped out because they didn’t have transportation. We had one person drop out, just refused to keep taking it on time, you know, you get up every morning and you take the pill.” —Study Participant 123
“... if you’re homeless, you probably also don’t have access to healthcare, even getting a way to the VA.” —Study Participant 115
“So, by putting our lives on the line, I don’t really accept someone telling me it costs too much. I think that’s an insult [ … ] I mean if a person needs to be tested for hepatitis C and it costs $10,000, you know what, this guy was going to die for us, for our nation.” —Study Participant 122
During the small group sessions, most participants (22 participants, 73%) endorsed sickest first policy over a first come, first served policy. Three small groups unanimously endorsed SF policy and three were split between SF and FCFS policy. Arguments in favor of SF policy (and arguments against FCFS policy) focused on the policy being medically and/or ethically “right.” For example, Veterans discussed how SF policy makes medical sense: it is simply triage.
“Having been a medic, working in the medical field, I always go for the triage thing. It’s just automatic.” —Study Participant 102
“The only problem with the first come, first served and being served, is if you serve those folks because they came first and now you have no medicine, and the worst person comes in, what do you tell him? ‘I’m sorry, we gave them to other people who just weren’t as bad as you, but we gave it to them anyway because they came here first.’ That is unethical...” —Study Participant 108
The sickest first policy also appealed to Veterans’ willingness to help and make sacrifices for their fellow Veterans – one of the great hallmarks of military service.
“All military people have an essence of taking care of their own. If you’re in a battalion and this guy is hurt worse than you, you’re going to try to help him [ … ] I don't know but that’s kind of been inbred into me in the military, as a military person, I would just say that this sickest has to go first.” —Study Participant 110
“… if someone’s sicker than me, I’d rather them get the treatment, because I’m going to get it, but maybe for them going first, they’ll survive...” —Study Participant 119
Age, as a proxy for health status and life expectancy, was also discussed as a factor to take into consideration. Moreover, in theory, “sickest first” sounds ideal, but what if a sick Veteran behaves in ways or has a lifestyle that reduces the value of treatment? Many study participants felt behavior and lifestyle should be taken into account when deciding who gets treated first.
“Well, looking at, you have to think about age, what other issues do they have and it’s better to ask the patient, ‘Do you think this is helping you, because you have these other issues? Do you think this is going to help you in the long run?’” —Study Participant 102
“…if the patient is intending to continue the risky behavior that caused this, if they have no intention of quitting their IV drug use or quitting the behavior that caused what they have […] It’s like why would I choose you even though you’re sickest, because you are not even mentally saying you’re going to do anything with that medication?” —Study Participant 111
“I think you should go before like a psychiatrist or a therapist or something that explains everything and see if you fit that criteria, because if your lifestyle’s not going to change, you’re just wasting everybody’s time and money.” —Study Participant 125
However, a few study participants disagreed or had concerns about adding a Veteran’s behavior and lifestyle into the equation.
“There’s no perfect person on the earth. You’re doing something, you’re gluttoning, you’re a gambler, you’re eating, you’re drinking, you’re doing something. I don’t care who you are, you’re not perfect, right? But you’re still on the humanity side. You treat the sick person, it’s simple.” —Study Participant 106
At the end of the day, participants recognized the difficulty of deciding who gets treated first.
“...a group of people is setting criteria for how to decide who gets it and when they get it and why they get it according to this criteria, and we have just found out that it is not easy – and that we
cannot even come up with something that’s like 1–2-3 step.” —Study Participant 110
Patient voices are often overlooked in policy discussions, despite evidence suggesting that patient engagement may promote successful implementation by leading to better outcomes, improved patient satisfaction, and lower costs. This study demonstrates the feasibility and value of using Democratic Deliberation to meaningfully involve patients in conversations about health policies that are complex and require the balancing of competing priorities – an important consideration, particularly as healthcare systems grapple with limited resources during the COVID-19 crisis.
To read more about this study, see: Waljee A, Ryan K, Krenz C, et al. Eliciting patient views on the allocation of limited healthcare resources: A deliberation on hepatitis C treatment in the Veterans Health Administration. BMC Health Services Research. May 1, 2020;20(1):369.
This study was partly funded by HSR&D. HSR&D continues to conduct studies on improving care for Hepatitis C, such as Advanced Prediction Models to Optimize Treatment and Access for Veterans with Hepatitis C and Evaluating Practice Facilitation to Optimize Alcohol-Related Care and HCV Treatment Outcomes in HCV Treatment Settings, as well as studies to increase patient-centric care, including Patient-centered Strategies to Engage Veterans in Behavioral Health Services, and Improving Patient-Provider Communication to Reduce Mental Health Disparities, to name a few.
- VA has Cured 100,000 Veterans of Hepatitis C. HHS.gov. Accessed April 29, 2020.
- Viral Hepatitis and Liver Disease. Epidemiology, Hepatitis C. Department of Veterans Affairs. Accessed April 29, 2020.