Public Opinions on Removing Disincentives and Introducing Incentives for Organ Donation: Proposing a European Research Agenda.

The shortage of organs for transplantations is increasing in Europe as well as globally. Many initiatives to the organ shortage, such as opt-out systems for deceased donation and expanding living donation, have been insufficient to meet the rising demand for organs. In recurrent discussions on how to reduce organ shortage, financial incentives and removal of disincentives, have been proposed to stimulate living organ donation and increase the pool of available donor organs. It is important to understand not only the ethical acceptability of (dis)incentives for organ donation, but also its societal acceptance. In this review, we propose a research agenda to help guide future empirical studies on public preferences in Europe towards the removal of disincentives and introduction of incentives for organ donation. We first present a systematic literature review on public opinions concerning (financial) (dis)incentives for organ donation in European countries. Next, we describe the results of a randomized survey experiment conducted in the United States. This experiment is crucial because it suggests that societal support for incentivizing organ donation depends on the specific features and institutional design of the proposed incentive scheme. We conclude by proposing this experiment's framework as a blueprint for European research on this topic.

How do surrogates make treatment decisions for patients with dementia: An experimental survey study.

Despite the growing need for surrogate decision-making for older adults, little is known about how surrogates make decisions and whether advance directives would change decision-making. We conducted a nationally representative experimental survey that cross-randomized cognitive impairment, gender, and characteristics of advance care planning among hospitalized older adults through a series of vignettes. Our study yielded three main findings: first, respondents were much less likely to recommend life-sustaining treatments for patients with dementia, especially after personal exposure. Second, respondents were more likely to ignore patient preferences for life-extending treatment when the patient had dementia, and choose unwanted life-extending treatments for patients without dementia. Third, in scenarios where the patient's wishes were unclear, respondents were more likely to choose treatments that matched their own preferences. These findings underscore the need for improved communication and decision-making processes for patients with cognitive impairment and highlight the importance of choosing a surrogate decision-maker with similar treatment preferences.

Providing vouchers and value information for already free eye exams increases uptake among a low-income minority population: A randomized trial.

We study whether vouchers without and with value information encourage attendance of already free follow-up appointments among low-income minority individuals referred for evaluation of possible eye disease. Between May 2017 and September 2018, 821 individuals referred from 114 screening events across Baltimore City were offered (1) standard referral for a free follow-up appointment and prescription glasses, (2) a paper voucher described as redeemable for free follow-up and prescription glasses, or (3) an otherwise identical paper voucher which also indicated the monetary value of the appointment ($250). Under all three conditions, all referred individuals received the same patient education, counseling, and appointment reminders. We find that vouchers without and with value information increase follow-up by 12.5 and 20.3 percentage points, respectively, corresponding to a 36% and 58% increase compared to the standard referral for free follow-up (i.e., without a voucher). We conclude that using vouchers is a promising, low-cost approach to increase uptake of already free health services, particularly when the vouchers also provide value information.

Using Incentives and Nudging to Improve Non-Targeted HIV Testing in Ecuador: A Randomized Trial.

Under-detection of HIV/AIDS still burdens many low- and middle-income countries (LMICs). Our randomized trial investigated the effects of financial incentives and a behavioral nudge to induce HIV testing and learning HIV status in Ecuador. In the control group, 12.2% of participants agreed to testing, and 5.3% learned results. A financial incentive paid at testing increased the fraction of participants tested by 50.1 percentage points (95% CI 38.8 to 61.4) and the fraction who learned their status by 8.9 percentage points (95% CI 5.3 to 12.5); the nudge had no effect. The HIV-positive rate was 1.2% in the control group, and incentives prompted a 4.7 percentage point (95% CI 0.5 to 8.9) higher proportion of HIV-positive detection. Incentives also induced earlier testing, suggesting reduced procrastination. This suggests that information with appropriately timed small financial incentives can improve HIV testing and detection of new cases in the general population in LMIC settings.

Providing Level-of-Match Information to Perfectly Matched Unrelated Stem Cell Donors: Evaluating Acceptability and Potential Changes in Donor Availability.

Patients with blood-related diseases often cannot identify a matched related donor and must seek donors in unrelated donor registries. These registries face the challenge of ensuring that potential donors are available when contacted. Donor attrition is especially problematic when there is only a single perfectly matched potential donor. One way to improve donor availability might be to present perfectly matched donors (high-priority donors [HPDs]) with more precise information about their match status. This project evaluated the impact of providing such information to HPDs at the National Marrow Donor Program (NMDP)/Be The Match. Objectives were to determine the acceptability of the new messaging to both HPDs and the donor contact representatives (DCRs) who delivered the message, consistency of message delivery, and whether the new messaging was associated with improved donor availability. Mixed methods were used to collect telephone interview data from HPDs, matched samples of non-HPDs, and DCRs. Donor availability data came from NMDP records. Key findings were as follows: (1) the HPD message was acceptable to potential donors and did not seem to produce undue pressure, (2) the message was acceptable to DCRs who became more comfortable and consistent in delivering the message over time, but (3) the new messaging did not significantly increase availability. Despite the lack of evidence for increased availability, there may be ethical benefits and little harm to providing well-matched donors with more information about their degree of matching. Research should examine stronger match status messages and delivery of new messaging to additional highly-matched donor groups.

Expectations, reference points, and compliance with COVID-19 social distancing measures.

We study the behavioral impact of announcements about the duration of a policy and their relationship with people's expectations in the context of the COVID-19 lockdowns. We surveyed representative samples of Italian residents at three moments of the first wave of the pandemic to test how intentions to comply with social-isolation measures depend on the duration of their possible extension. Individuals were more likely to reduce, and less likely to increase, their compliance effort if the hypothetical extension was longer than they expected, whereas positive surprises had a lesser impact. The behavioral response to the (mis)match between expected versus hypothesized extensions is consistent with expectations acting as reference points and can help explain the increase in observed physical proximity in Italy following lockdown extension announcements. Our findings suggest that public authorities should consider citizens' expectations when announcing policy changes.

Impact of a recognition package as an incentive to strengthen the motivation, performance, and retention of village health teams in Uganda: a study protocol for a cluster randomized controlled trial.

INTRODUCTION: Uganda's community health worker (CHW), or village health team (VHT), program faces significant challenges with poor retention and insufficient financial and program investment. Adequate compensation comprising financial and non-financial components is critical to retaining any workforce, including CHWs. This study evaluates the impact of a recognition-based non-financial incentives package on the motivation, performance, and retention of VHTs, as well as on the utilization of health services by the community. The incentive package and intervention were developed in collaboration with the district-level leadership and award VHTs who have met predetermined performance thresholds with a certificate and a government-branded jacket in a public ceremony. METHODS: A two-armed cluster randomized controlled trial (RCT), conducted at the parish level in Uganda's Masindi District, will evaluate the effects of the 12-month intervention. The cluster-RCT will use a mixed-methods approach, which includes a baseline/endline VHT survey to assess the impact of the intervention on key outcomes, with an expected sample of 240 VHTs per study arm; our primary outcome is the total number of household visits per VHT and our multiple secondary outcomes include other performance indicators, motivation, and retention; VHT performance and retention data will be validated using monthly phone surveys tracking key performance indicators and through abstraction of VHT-submitted health facility reports; and focus group discussions will be conducted with VHTs and community members to understand how the intervention was received. Data collection activities will be administered in local languages. To assess the impact of the intervention, the study will conduct a regression analysis using Generalized Estimating Equations adjusting for cluster effect. Further, a difference-in-differences analysis will be conducted. DISCUSSION: This study utilized a cluster-RCT design to assess the impact of a recognition-based incentives intervention on the motivation, performance, and retention of VHTs in Uganda's Masindi District. Utilizing a mixed-methods approach, the study will provide insights on the effectiveness and limitations of the intervention, VHT perspectives on perceived value, and critical insights on how non-financial incentives might support the strengthening of the community health workforce. TRIAL REGISTRATION: ClinicalTrials.gov NCT05176106. Retrospectively registered on 4 January 2022.

Treatment preferences among adults with normal cognition and cognitive impairment.

BACKGROUND: Although patient participation in treatment decisions is important for preference-concordant care delivery, it is largely unknown how cognitive impairment influences treatment preferences. We investigated whether treatment preferences for the care of serious illness differ between adults with and without cognitive impairment in hypothetical clinical scenarios. METHODS: Data from the 2018 Health and Retirement Study were used. The sample included 1291 self-respondents (201 respondents with cognitive impairment, and 1090 with normal cognition). We examined treatment preferences for life-extending, limited, and comfort care options in two hypothetical clinical scenarios where the respondent imagines a patient with (1) good physical health with severe cognitive impairment consistent with dementia; and (2) with physical impairment due to a heart attack, but normal cognition. Respondents specified whether they were unsure, or if they would want or not want each treatment option. Linear probability models were used to compare treatment preferences by cognitive status. RESULTS: Respondents with cognitive impairment were more likely to report that they were unsure about treatment options across both clinical scenarios compared to those with normal cognition. For the limited treatment option, cognitive impairment was associated with a lower rate of expressing a treatment preference by 7.3 (p = 0.070) and 8.5 (p = 0.035) percentage points for dementia and heart attack scenarios, respectively. Among those who articulated preferences, cognitive impairment was associated with a higher rate of preference for life-extending treatment in both dementia (30.1% vs. 20.0%, p = 0.044) and heart attack scenarios (30.0% vs. 20.2%, p = 0.033). CONCLUSIONS: Compared to those with normal cognition, cognitive impairment was associated with greater uncertainty about treatment preferences and higher rates of aggressive care preferences among those who specified preferences. Further research should assess whether preferences for aggressive care become more common as cognition declines in order to improve preference-concordant care delivery for patients with cognitive impairment.

Financial Incentives, Not Behavioral Nudges, Led to Optimized HIV Testing among Pregnant Women in a High-Burden Urban Population in Ecuador.

Behavioral economic principles are increasingly being used in the fight against HIV, including improving voluntary testing in sub-Saharan Africa and South America. However, behavioral nudges have not been widely tested as a strategy to optimize HIV testing in pregnant women. Here, we assessed whether behavioral nudges or financial incentives were effective in optimizing HIV testing among pregnant women in a high-HIV burden setting. A randomized clinical trial was conducted between May 21 and Oct 5, 2018, to allocate pregnant women in Ecuador into three study arms: information only, soft commitment (i.e., a behavioral nudge), and financial incentives. All participants received an informational flyer, including the address of a testing location. Participants in the soft-commitment arm signed and kept a form on which they committed to get tested for HIV. Those in the financial incentive arm received a $10 incentive when tested for HIV. A stepwise logistic regression analysis estimated the effect of the study arms on HIV testing rate. Participants in the financial-incentive arm had higher odds of getting an HIV test (adjusted odds ratio 17.06, P < 0.001) as compared with information-only participants. Soft-commitment had the opposite effect (adjusted odds ratio 0.14, P = 0.014). Financial incentives might be useful in improving HIV testing among pregnant women, especially among those who might be at higher risk but who have not completed an HIV test.

Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life.

CONTEXT: Cognitively impaired older adults frequently need surrogate decision-making near the end-of-life. It is unknown whether differences in the surrogate's relationship to the decedent are associated with different end-of-life treatment choices. OBJECTIVES: To describe differences in end-of-life care for community dwelling, cognitively impaired older adults when children and spouses are involved in decision-making. METHODS: Retrospective observational study. RESULTS: Among 742 community-dwelling adults with cognitive impairment (mild cognitive impairment or dementia) prior to death, children participated in end-of-life decisions for 615 patients (83%) and spouses participated in decisions for 258 patients (35%), with both children and spouses participating for 131 patients (18%). When controlling for demographic characteristics, decedents with only a spouse decision-maker were less likely to undergo a life-sustaining treatment than decedents with only children decision-makers (P < 0.05). There was no difference in the probability of in-hospital death or burdensome transfers across facilities across decedent-decision-maker relationships. Differences in rates of life-sustaining treatment were greater when we restricted to decedents with dementia. CONCLUSION: Decedents with cognitive impairment or dementia were less likely to receive life-sustaining treatments when spouses versus children were involved with end-of-life treatment decisions but were no less likely to experience other measures of potentially burdensome end-of-life care.

Motivating Cord Blood Donation with Information and Behavioral Nudges.

Umbilical cord blood is a source of hematopoietic stem cells essential to treat life-threatening diseases, such as leukemia and lymphoma. However, only a very small percentage of parents donate upon delivery. The decision to donate the cord blood occurs at a very specific time and when parents likely experience emotional, informational, and decisional overloads; these features of cord blood donation make it different from other pro-social activities. In collaboration with an OB-GYN clinic in Milan, Italy, we conducted the first randomized controlled trial that applies tools from behavioral science to foster cord blood donation, and quantified the gains that informational and behavioral "nudges" can achieve. We found that information and "soft" commitments increased donations; approaching expecting parents closer to the delivery date and providing them with multiple reminders, moreover, had the strongest impact. However, a significant portion of women who expressed consent to donate could not do so because of organizational constraints. We conclude that simple, non-invasive behavioral interventions that address information gaps and procrastination, and that increase the salience of the activity can substantially enhance altruistic donations of cord blood, especially when coupled with organizational support.

Bias in patient satisfaction surveys: a threat to measuring healthcare quality.

Patient satisfaction surveys are an increasingly common element of efforts to evaluate the quality of healthcare. Many patient satisfaction surveys in low/middle-income countries frame statements positively and invite patients to agree or disagree, so that positive responses may reflect either true satisfaction or bias induced by the positive framing. In an experiment with more than 2200 patients in Nigeria, we distinguish between actual satisfaction and survey biases. Patients randomly assigned to receive negatively framed statements expressed significantly lower levels of satisfaction (87%) than patients receiving the standard positively framed statements (95%-p<0.001). Depending on the question, the effect is as high as a 19 percentage point drop (p<0.001). Thus, high reported patient satisfaction likely overstates the quality of health services. Providers and policymakers wishing to gauge the quality of care will need to avoid framing that induces bias and to complement patient satisfaction measures with more objective measures of quality.

Markets and morals: an experimental survey study.

Most societies prohibit some market transactions based on moral concerns, even when the exchanges would benefit the parties involved and would not create negative externalities. A prominent example is given by payments for human organs for transplantation, banned virtually everywhere despite long waiting lists and many deaths of patients who cannot find a donor. Recent research, however, has shown that individuals significantly increase their stated support for a regulated market for human organs when provided with information about the organ shortage and the potential beneficial effects a price mechanism. In this study we focused on payments for human organs and on another "repugnant" transaction, indoor prostitution, to address two questions: (A) Does providing general information on the welfare properties of prices and markets modify attitudes toward repugnant trades? (B) Does additional knowledge on the benefits of a price mechanism in a specific context affect attitudes toward price-based transactions in another context? By answering these questions, we can assess whether eliciting a market-oriented approach may lead to a relaxation of moral opposition to markets, and whether there is a cross-effect of information, in particular for morally controversial activities that, although different, share a reference to the "commercialization" of the human body. Relying on an online survey experiment with 5,324 U.S. residents, we found no effect of general information about market efficiency, consistent with morally controversial markets being accepted only when they are seen as a solution to a specific problem. We also found some cross-effects of information about a transaction on the acceptance of the other; however, the responses were mediated by the gender and (to a lesser extent) religiosity of the respondent--in particular, women exposed to information about legalizing prostitution reduced their stated support for regulated organ payments. We relate these findings to prior research and discuss implications for public policy.

Removing financial barriers to organ and bone marrow donation: the effect of leave and tax legislation in the U.S.

Many U.S. states have passed legislation providing leave to organ and bone marrow donors and/or tax benefits for live and deceased organ and bone marrow donations and to employers of donors. We exploit cross-state variation in the timing of such legislation to analyze its impact on organ donations by living and deceased persons, on measures of the quality of the transplants, and on the number of bone marrow donations. We find that these provisions do not have a significant impact on the quantity of organs donated. The leave laws, however, do have a positive impact on bone marrow donations, and the effect increases with the size of the population of beneficiaries and with the generosity of the legislative provisions. Our results suggest that this legislation works for moderately invasive procedures such as bone marrow donation, but these incentives may be too low for organ donation, which is riskier and more burdensome.

The effects of information, social and financial incentives on voluntary undirected blood donations: evidence from a field experiment in Argentina.

In many low- and middle-income countries blood donations per capita are substantially lower than in advanced economies. In these countries blood supply is mostly collected through directed donations from relatives and friends to individuals needing transfusions or to replace blood used in emergencies. The World Health Organization considers this method of blood supply inefficient compared to undirected voluntary donations. To examine methods to motivate undirected voluntary donations, we ran a large-scale, natural field experiment in Argentina, testing the effectiveness of information, social and financial incentives. We find that only higher-valued financial incentives generated more donations, increasing with the value of the reward. These incentives did not create adverse selection in the safety or usability of the donated blood. We discuss the implications of our findings for researchers interested in understanding motivations for pro-social behavior and for health agencies and policymakers concerned with the current and growing shortages in blood supply in low- and middle-income countries.