We have reported that most investigators did not see compensation for time and effort as an incentive, but rather a necessary recompense for the work they do. However, it must be a realistic figure based on a proper costing of time and expenses. It must not be excessive. Some thought there was room for a small ‘profit’, but this should be paid to the institution rather than the
individual. Problems would arise when incentives
“Well actually if I was choosing between a bottle of wine and a £5 note for completing a questionnaire I would feel that the … bottle of wine was a bribe or a reward or an incentive, whereas the £5 was a payment for the work I’m doing. So I guess, I think there’s a qualitative difference.”
(HD3) “… it needs to be very clear about why an incentive occurs, how it, what the benefits are to the
individuals. There needs to be a clear process, explicit process as to why it’s happening, where the benefit is being seen. I think there is a significant danger in an individual receiving money … And that’s the major one I think. What that money gets used … for me it would have to be used for the benefit of the NHS as a whole, be that patients or staff or environment or whatever. Not on somebody’s jaunt to India to present or whatever.”
(HD2) “I think so far we haven’t ever been involved in offering financial incentives directly to doctors for being involved in studies. It will always be by way of funding that will be payable to their research funds so there are no personal payments ever given to
clinicians that are involved in studies.”
(GP5) “I don’t think payments should be excessive and I think that’s the difficulty – what is the appropriate level of payment that should be made. I also think that paying at the [GP] practice level means that there’s less coercion, the potential for coercion is less. I think paying in that way also means that … I mean if a practice doesn’t deliver we won’t pay that fee, but if they do deliver, and they may not deliver hundreds in terms of recruitment, but we do know how hard they’ve tried or not tried because we are in close contact with them – then I think that has to be recognised.”
(HR9)
Transparency and disclosure
Most respondents believed that, in general, transparency was an important way of overcoming some of the negative aspects of incentives. How this was to be achieved was difficult. We asked respondents whether they thought patients should be told the extent of payments to the health professional for recruiting them into trials. The responses to this question were mixed. Several thought it was too difficult to explain properly to patients. The situation could be complex, and patients might not be able to put the payment into the context of the costs of the trial. The main issue was whether or not the health professional was making a profit. One respondent likened paying incentives to taking out a mortgage:
“You need to be aware of what your agent is and what the incentives that agent has for pushing towards a certain policy.”
(GP2) “I don’t think it would be helpful for most patients to be told the amount because I don’t think the majority of patients would really understand. It would seem, certainly for an oncology study, it would seem like a huge amount of money. But I suspect the average oncology patient would have no idea how much a CT scan is, whether it’s the NHS paying or privately paying, just the actual physical cost of doing a CT scan or a PET scan. And so I think they would just think oh that’s an enormous amount of money without really understanding at all. And I think that would actually probably end up losing us patients because people would feel that actually they’re making a profit out of them, where in actual fact they probably aren’t making a profit out of them.”
(GP4) “… in a lot of the information sheets now – they won’t say the amount of money but they will state that the investigator is being paid for this. And it tends to be to cover costs and all the rest of it. And I think most people understand that. And I think probably, I don’t know – I would be very interested to know if you were to ask patients what level would they feel happy about the amount of profit that would go into it. I suspect most wouldn’t mind a modest profit but then again seem … I think I would be extremely angry as a patient if I thought there were huge amounts of profits being made out of putting people in studies. So I think it’s in our interest to keep those profit margins down to a reasonable level.”
(GP6)
Several respondents remarked on the length of patient information sheets and because of the complexity of the information were reluctant to burden patients with any more detail. Other respondents talked about “the patient test” – if the investigator felt able to tell the patient how much they were being paid, this was an acceptable amount as these examples show. Respondents also believed that patients would not find payments to individuals acceptable:
“If you are embarrassed about the amount of money you are being paid for the job you are doing, then you are being paid too much. You know, if you are being paid £500 for recruiting this person into this study, and you’re going to be embarrassed about that – well you are asking too, you shouldn’t be doing it.”
(GP10) “Yes, I think that you have to be careful about it, I don’t have a problem with an incentive even a financial one, that you can use indirectly for professional-related activities. I feel quite comfortable about that. I would The views of NHS health professionals on financial incentives
have no problem, I think the ultimate test I’ve always applied is ‘Are you, would you be comfortable discussing with a patient?’ because if I’m doing [name of condition], it says what do we gain financially or why do you want to do it to gain financially, I feel quite comfortable saying ‘Well, the reasons are as follows, these are the activities I support that we create’, so I’d have a problem with it coming to me personally, I think that would put me into a rather difficult and unethical situation, but I think where the money is being used indirectly to support [other research activities] I have no problem with that.”
(HD8)
Some respondents argued that it was not necessary to tell patients about compensation paid for time and effort, since they were not told about other aspects of doctor’s services, for example the cost of a consultation in the NHS.
During the interviews, it became apparent that many of the respondents were not entirely clear about their views on incentives for health professionals to recruit patients to trials. When analysing the interviews we noted contradictions, and in some areas strong personal views. This respondent illustrates the way that several of our respondents consolidated their opinions after discussing the issues with the interviewer:
“… I’ve leaned away from incentives … but having spoken to you I think it’s certainly not an absolute question. I don’t think I would dismiss a study that had paid their participants or their researchers, you know, their – clinicians, to do that study, so it probably is O.K. to do it and as we move more and more towards payment by results out of maybe transparency these clinicians’ time, the participants’ time may in fact be a reasonable way to go which is probably directly opposed to what I would have said to you half an hour ago when I sat down on this seat.”
(HD5)
Summary and discussion
A key finding was the distinction between expenses and payment over and beyond expenses. The former were strongly supported while the latter were frowned upon. While the distinction between costs and prices (to use economics terminology) may be debatable, it does provide limits on what prices might be deemed reasonable. The key element may be the value attached to a clinician’s time, which may differ between the clinician and others, such as employers, patients and possible commercial contractors. Payment for clinicians’ time raises questions about scope for private work, which applies more widely to clinical practice. Potential positive effects of financial payments to clinicians for research involvement included improved recruitment and validation of processes. Some lead investigators were moving towards paying collaborators an amount per patient recruited. Financial compensation to collaborators was seen not only as rewarding commitment but also enabling quality control.
On the negative side, it was feared that financial payments could erode altruism and encourage ‘unsuitable’ researchers who would provide lower quality research.
Ethical issues were raised, leading to some suggested principles for payments: good study design, payments to organisations rather than individuals and improved transparency and disclosure.
Introduction
This chapter reports on interviews with the same group as the previous chapter but to do with more general issues.
Interviewees were asked a series of questions, starting with ‘why do some health professionals choose to take part in clinical trials, while others choose not to?’ They were then questioned about the role of altruism and the role of non-financial incentives (such as recognition, reputation and publications). At the end of each interview we asked why each respondent had agreed to be interviewed. Successive sections below deal with the analysis of responses in terms of:
● motivating factors ● barriers to research ● contextual factors
● why interviewees agreed to participate.
Themes within each heading were identified primarily on the basis of frequency of mention but also on emphasis, sorted into major and minor themes. Some principles for payment for involvement in research, as suggested by the interviewees, are also summarised.