Perceived ethical acceptability of financial incentives to improve diabetic eye screening attendance

Participants

The study was conducted across west London, in partnership with local provider 1st Retinal Screen Ltd. All 925 people with diabetes due to be screened in August 2013 were approached. Of these, 828 attended their appointment, during which they were issued with a voluntary questionnaire. There was a response rate of 44%. Questionnaires were posted to those who did not attend, with an invitation to rearrange their appointment. The views of this cohort would be especially valuable, as the success of an incentive scheme would be judged on an increase in participation; however, only six responded.

Finally, to ascertain the perspective of diabetes professionals, a questionnaire was issued to the screening team at 1st Retinal Screen, and to all general practitioner (GP) practices in the area for which addresses were available. The screening team were very engaged with the project and all five completed the questionnaire. None of the local GP practices responded.

Questionnaire

For attendees and non-attendees, questions 1–3 captured basic demographic information: gender, age group, and postcode.

Question 4 comprised statement pairs expressing opposing positions on ethical concerns raised in previous studies.12 ,13 Owing to the complex nature of ethical debate and the difficulties in coding this into statements, it was not always possible to devise pairs that were logical opposites. However, the intention was to encourage participants to decide in favor of or against incentives.

4.1: The message

• Offering an incentive sends a positive message to everyone that participation in the screening program is important.

• Offering an incentive sends out the wrong message—people should not be paid to do the right thing—they should participate in screening for the good of their own health, not for money.

The way health services are delivered can communicate underlying messages about health and the National Health Service (NHS). This question captured views on how that message might be interpreted by the _target group.

4.2: Fairness/responsibility

• At the moment, only some people get screened. If this scheme encourages everyone to be screened, this is fairer for society and means everyone has the same chance to be healthy.

• This ignores where the real responsibility lies. Doctors, the Government, and the NHS should encourage people to look after themselves without paying.

Incentive schemes may reduce health inequalities, but this could be perceived as the NHS ignoring its other responsibilities.

4.3: NHS values

• Incentives complement the values of the NHS, by encouraging those most in need to access the resources that will improve their lives.

• Incentives undermine the key principles of the NHS, that healthcare should be free when using services.

Key NHS principles are equality of access and the absence of financial transaction. Financial incentives may reduce inequality, but introduce cash transfers at the point of care.

4.4: Autonomy/choice

• It is better than compulsory screening—people can still choose whether to take the incentive.

• Very poor people may feel that they do not have a choice—offering an incentive might coerce, or force people into doing something they do not want to do.

Another key debate around the remit of the NHS is on consent. If incentives are perceived to threaten autonomy, this could render them unacceptable.

4.5: Wider impact

• If it works, it could be used in other services as a way of encouraging people to look after their health.

• It could lead to people expecting money to use other NHS services, which could be expensive in the long run.

Introducing a new and effective mechanism in one service could lead to proliferation.

4.6: Opportunity cost

• Offering incentives will cost the NHS less in the long run by preventing bad health before it becomes a problem.

• Taxpayers’ money should not go to people who are not looking after themselves properly.

Should the NHS be a passive provider of care for those who seek it, or take extra steps to combat problems early on?

4.7: Risk

• Even if screening can never be 100% accurate, if it prevents one person from losing their sight, it is worthwhile.

• Incentives would only be acceptable if screening was 100% accurate, because people would trust the result.

This question attempts to capture the problem of inaccuracy and risk. The NHS makes a concerted effort to communicate the fallibility and stress of screening. Taking stronger measures to encourage participation acts against these warnings, and may persuade those who would otherwise decide against screening.

Question 5 asked participants to consider different types of incentive. A cash reward is often found to be least acceptable but most effective,14 so it would be worth measuring the difference in opinion between cash and healthy food or book vouchers (5.2 and 5.1, respectively) and between covering expenses and additional reward (5.6 and 5.7). These questions test the ethical problem with cash payments against encouraging positive behavior and compensation, respectively.

The principles of behavioral economics suggest that we overweight small probabilities, which might make a prize draw effective.15 Alternatively, a financial reward every time might be more acceptable (5.10 and 5.9).

For the individual, a large incentive (eg, £60) might be a more agreeable prospect. Equally this might be perceived as wasteful and a smaller reward (eg, £6) might be perceived as more proportionate (5.3 and 5.4).

_targeting certain demographics could help further reduce inequalities and make a scheme more affordable.16 However, in a health system underpinned by solidarity and equality, _targeted rewards could cause resentment. We asked whether incentives should only be available for those who had not attended before, or for all (5.7 and 5.8).

For those who did not attend questions 6–8 ascertained their reasons, to identify whether they had reservations or were misinformed. A previous study into the reasons for non-attendance informed the question design.5

The questionnaire was tested on patients with diabetes as well as patients without diabetics.

Analysis

The high response rate from the attendee group allowed full statistical analysis. However, the markedly low response rate from the non-attendees and health professionals only permitted limited analysis.

Postcodes gave an Index of Multiple Deprivation score, which allowed the group to be divided into deprivation quintiles, with 1 representing the least deprived and 5 representing the most deprived. Simple summary statistics demonstrated the difference in acceptability for question 4.

To ensure question 4 was capturing ethical acceptability, we ran a factor analysis which showed a high degree of correlation between responses (figure 1). The exception being the final statement pair. This outlier question may draw on different constructs, about the risks of screening itself, rather than how this relates to ethical acceptability. Cronbach's α coefficient measure of internal consistency found responses to question 4 to be highly reliable (α=0.91) when 4.7 was excluded.

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By coding negative views as 0 and positive as 1, giving equal weight to questions 4.1–4.6, a mean score for participants’ perception of ethical acceptability was devised. Zero indicated that incentives were found to be unacceptable for all subquestions, and 1 indicated that incentives were found to be acceptable for all (table 1).

To understand the effect of sex, age, and deprivation on responses to question 4, a binary logistic regression was used, and a linear regression analysis on the overall mean acceptability score (table 2). A linear regression analysis on question 5 helped to understand the relative impact the demographic variables had on the perceived ethical acceptability for each type of incentive (table 3).

Participants attending the clinic

Sixty-two percent of participants felt that offering an incentive sends out the wrong message and that people should participate in screening for their own good. Participants also showed concern about the way incentives align with the principles of the NHS, with 58.7% of those who answered feeling that it undermines the lack of financial transaction at the point of healthcare delivery.

Responses were balanced on whether it could be a useful tool elsewhere, or simply lead to people expecting payment in other services, with half (50.6%) fearing this possibility.

There was less concern about the potential for coercion and impact on the ability to choose, with 58.6% feeling that individual autonomy was retained. There was also slightly less concern about using health resources in this way, with more participants (53.1%) thinking it might cost the NHS less in the long run by preventing ill health. In total, 52.8% of participants felt that other routes should be tried, and more responsibility placed on the NHS to encourage people to take better care of themselves.

Overall, participants tended to answer consistently negatively or positively, with 31.3% answering negatively on all questions, and a further 11.2% erring on the side of unacceptability for all but one of the questions. In total, 27.7% responded positively to all questions with a further 5.6% answering positively to all but one.

Those in the middle age group were more accepting of incentives generally (mean=0.52, SD=0.42), which is especially evident for questions on the impact of autonomy (4.4) and on opportunity cost (4.6), which were answered positively by 62.79% and 59.17% of participants, respectively. In general, the older age group gave more negative responses, particularly on the message incentives send out, with only 28.57% giving a favorable view. Overall, participants in the two most deprived quintiles felt more positively about incentives than those in the least deprived groups (table 1).

Overall acceptability of incentives decreases with age in a statistically significant way (β=−0.092, p=0.025). Increasing age was also found to be a significant predictor on some of the ethical dimensions. Older participants were more likely to be concerned about the message (β=−0.54, p=0.011) and the impact on autonomy and choice (β=−0.46, p=0.04; table 2).

Deprivation and sex were not found to be significant predictors of overall acceptability; however, male participants were more likely to feel positively about the message (β=0.511, p=0.036) and issues of fairness and responsibility (β=0.481, p=0.045). Those in the most deprived groups were statistically more likely to feel positive about the wider impact of incentives (β=0.167, p=0.044; table 2).

On incentive types, vouchers were preferred to cash, with 36.5% of participants who answered the question finding vouchers to be very acceptable, compared with 18.6% who found cash very acceptable and 64.4% of participants finding it completely unacceptable. When asked whether small or large cash incentives would be preferable, most responded that neither would be acceptable. However, among those who responded positively, almost twice as many (65) found small incentives very acceptable than those finding large very acceptable (38).

Compensating for expenses incurred was found to be either slightly or completely acceptable by over half (51.1%) of all those who responded. This compares to 72% of participants who felt paying over and above reasonable expenses to be slightly or completely unacceptable. In total, 24.4% of participants found _targeted incentives to be wholly or slightly acceptable, whereas 34.5% found incentives for all to be acceptable.

More deprived groups were statistically more likely to find small payments (β=−0.181, p=0.007) and prize draws acceptable (β=−0.143, p=0.025). With increasing age, vouchers were found to be more acceptable in a statistically significant way (β=0.405, p=0.016). Other statistically significant preferences for incentive types which increase with age were large payments (β=0.42, p=0.005), paying more than just expenses (β=0.516, p=0.001), and incentives for all (β=0.516, p=0.008; table 3).

The results demonstrate a clear preference overall for offering vouchers and expenses over cash and paying more than just expenses. The mean responses to question 5 also demonstrate a clear preference overall for vouchers compared with any other type of incentive. Small cash payments were, in general, preferred to large—although overall the mean score demonstrates less approval of cash payments in general, regardless of size. Prize draws were also found to be more unacceptable than small payments every time; however, this question was framed in the context of cash payments, and the mean responses reflect a general aversion to cash incentives (table 4).

Using a paired samples t test to compare incentive types, vouchers were found to be significantly more acceptable than cash (t=−10.380, p=0.000). Small payments were more acceptable than large (t=−5.048, p=0.000). Expenses were significantly more acceptable than paying extra (t=−12.886, p=0.000).

Non-attendees—postal responses

There were a range of views on ethical acceptability in general and for different incentive types, but mostly positive. While it is not possible to draw conclusions or properly analyze the non-attendee group, the mean acceptability for different incentive types broadly aligns to the responses provided by the attendee group, with participants preferring vouchers, small payments, expenses, and incentives for all.

Staff

On overall ethical acceptability, there was a marked difference from the non-attendee group. There were far more negative responses than positive, with only 41% of all responses to question 4 falling in favor of incentives. On incentive types, staff gave responses broadly in line with those of both patient groups, demonstrating a preference for vouchers and expenses, on average finding these to be acceptable. While neither small nor large cash payments were found to be particularly acceptable, there was a clear preference for smaller incentives. The staff were the only group to prefer a prize draw over payment for all.

Limitations

As an initial investigation, this study has revealed some useful and important findings. An expanded study, with a more refined questionnaire aimed at reaching a wider and more diverse sample group would allow inferences to be made about the whole population. A sample which assessed the views of those from different areas of the country would have been useful; as urban Londoners are not necessarily representative of the country as a whole. The sample was also largely comprised of those who might benefit from an incentive scheme. There is a concern that responses may be distorted in self-interest.

We experienced difficulty in gathering the views of those who did not attend their screening appointment: while this was anticipated, it is nonetheless frustrating, as this is the group that an incentive scheme would ultimately _target. It might have been more productive to call each non-attendee directly and guide them through the questionnaire over the telephone.

In asking participants to choose from predetermined ethical concerns, the argument was framed, potentially influencing participants’ views. A more open approach which asked participants for their views on incentives with fewer prompts may have been less subject to potential bias in questionnaire design.

The number of people who chose to make additional comments suggests that a free-text field in the questionnaire would have been welcomed and allowed the collection of qualitative data. Some participants expressed difficulty as the ethical statement pairs were not mutually exclusive, and that this made it difficult to choose. Others felt they appreciated both sides of the argument. Further research into this subject might want to allow participants more time for consideration, and revisit the questionnaire design to provide more detailed or granular questions.

There is certainly space for further qualitative, quantitative, and philosophical research into the ethical acceptability of incentives, and their implementation and efficacy.