Researchers' experiences of patient & public involvement

Current INVOLVE guidance is that people who get involved in research should be offered payment for their time, even if they choose not to accept it, as well as reimbursement for travel, accommodation and any other expenses such as respite or child care. Researchers we talked to emphasised the importance of making sure this is properly costed in all grant applications, and that funders accepted it as a legitimate cost. Several talked about the difficulty of funding involvement at the grant development stage; some had used local NIHR Research Design Service funding support to help (see also Pam later). Determining the ‘right’ level of payment to include was a common worry.

While there was agreement that paying people for involvement was nationally recommended policy, there were some concerns about whether it was a good idea. Catherine suggested some people might just ‘see it as an easy way to make money… There's a risk that you'll get people who maybe aren’t that interested in helping with research but just want to make the money.’ However, most researchers we talked to felt there was little evidence of this. In practice, people may choose not to accept it, but most agreed it was better to cost it in and offer it than not. Stuart was one of many who felt it was simply equal recognition of skills: ‘You can't do research without statisticians, you can’t do research properly without members of the public, and in the same way you pay for statistics you pay for getting this involvement.’ Carl was concerned that paying people undermined the principle of volunteering, and Bernadette agreed that ‘it’s a bit like blood donors - if you start to pay blood donors you’re going to get a different group that are going to donate blood than if you rely on people’s voluntary contributions. So I think paying people will skew things possibly not the right way’. But Tom argued that small payments didn’t really undermine altruistic behaviour. John suggested payment was an important way to get a more diverse group of people involved. Others felt that it was an important principle to place some value on people’s time. Marian pointed out that payment only helps so far – people who have jobs still have to get their employer to agree to time off. There was some disagreement about whether payments for involvement represented value for money, or whether this mattered. Sarah A commented ‘PPI costs peanuts compared to a lot of the things that we pay for on grants’. But perceptions of value for money might depend partly on what was being expected of people and how well they were being prepared and supported to contribute. While Anne was worried about people being paid and saying nothing, another researcher described the opposite concern: that sometimes people may feel obliged to say something at a meeting because they’re being paid, even if they don’t really have anything to contribute. Again, however, this could be more a matter of effective support and preparation than a problem caused by paying people. Alison was one researcher who wondered if having a more contractual relationship might help. Problems for individuals accepting payments when on benefits remained a major concern. It is often argued that payment is important to widen the pool of people who get involved and attract people who otherwise would not consider or could not afford to get involved. But paradoxically, as Vanessa and Hayley pointed out, it can increase inequality if some wealthier people are able to accept payment while those on benefits are not. 

As Ann said, it is a challenge ‘keeping on top of what the rules and regulations say because they change all the time, and knowing where to signpost people’ for further information. (NIHR INVOLVE has recently introduced a benefits advisory helpline to advise both patients and researchers about the latest guidance – see the ‘Resources’ page). 

Dealing with this complexity around benefits was one reason why people found it helpful to have good administrative support for involvement in their organisation. Another benefit of good organisational support was to help ensure people got their expenses reimbursed quickly (see also Sarah above). Lengthy bureaucratic delays in processing payments were a common source of frustration and embarrassment. Where possible, some researchers recommended booking and paying for travel tickets and accommodation for people in advance, or reimbursing people in cash.  Alison made the point that there was a danger in researchers trying to save money by involving local people who would not incur so many costs. ’It's a lot of miles and it's a night in a hotel and all the rest of it, and is it OK to say, "Sorry we don’t want you; we want someone local who's going to be cheaper?" You can't really… because then you're biasing your involvement structures to people who happen to live down the road.’ Whilst local involvement might be fine in some cases, for other purposes a more regional or national sample might be appropriate.

As well as formal payment, researchers identified various other in-kind incentives to offer people. These included good refreshments; volunteering credits or certificates for people’s CVs; social events; learning opportunities and skills development.