Patient and public involvement in research

People who got involved in research told us about the costs to them. These aren’t just financial costs, but include costs in terms of time, energy and emotion. After their son’s death, Kath chose to review grant proposals at first because going to meetings was too emotional. Jennifer said she had broken down once or twice in meetings; Derek once had to leave the room and take a few deep breaths after hearing a distressing description of an operation. Helena said for her it was more to do with the stress of getting your points across: ‘there is a potential emotional toll but I think it's more to do with whether you're listened to really.’ Tiredness can be a particular problem for people with some conditions, but everyone can find it tiring reading documents and travelling to meetings. It can also be frustrating and stressful; Hazel knew people who had dropped out because of this.

There was general agreement that no-one should be ‘out of pocket’, as Margaret put it. INVOLVE (the national NHS advisory group for patient and public involvement) recommends covering expenses as a minimum. Commonly this includes travel expenses, with meals and overnight accommodation if necessary – though not everyone chooses to claim these. Some organisations book rail fares and hotels upfront for people so they don’t have to pay. But expenses might also include printer ink and paper (assuming people have a computer); telephone call costs; the costs of arranging care for children or other family dependents; or needing to bring a carer with you to a meeting. It can take a long time for people to have their expenses reimbursed, which was frustrating for some people because, like Marney said, even small amounts add up. Apart from expenses, the question of whether and how much patients and members of the public should be paid for their involvement causes much debate. Some felt uncomfortable with the whole idea of being paid. This might be because they saw it as a purely voluntary activity, which they did for altruistic reasons. Tom and Dave X worried about whether it was good use of public or charity funds. Some also felt they were repaying a debt to the NHS and previous research participants, and that being paid for it could in some ways undermine the value of the contribution they wanted to make. It was also argued that not being paid gave people greater freedom to say no to particular tasks or projects and to be independent and critical; Charles said, “I think they should have their expenses reimbursed but I think really you're looking for a completely unbiased input, and I think that that is best done on a free entirely voluntary input.’ A few people worried that payment might attract people to get involved for the wrong reasons. But others argued that researchers were “getting a group of consultants for nothing”, as Nadeem put it, so payment was welcome recognition of the value of their work, even if it would never be their main reason for getting involved. Nadeem continued saying, “I want to still make money to pay the bills, so every little helps”. Janice said, “My husband says it works out at less than the minimum wage per hour, but again it's more about it being a nod in the direction and that's not been a problem.”   INVOLVE supports the principle that people should be offered payment for their time, even if they do not wish to claim it, and some of the people we spoke to said they were doing it because they could be paid for it. Because there’s a history of heart disease in his family, Francesco gave up work to do something he was interested in. He said he needed to be paid for involvement and Mary said it was “disgraceful” to think that people may not be paid for being involved. Helena was concerned it was exploitative not to at least offer to pay people, and that not doing so would limit who could get involved. There were many reasons why people thought it was right to be paid for involvement, including creating a more equal relationship with professionals around the table; valuing and respecting people’s contribution; replacing lost income if people had to take time off; and attracting a more diverse group of people, not just retired and/or middle class people who can afford to give time for free. As Mary said, ‘why should I volunteer my time when everybody else around the table isn't volunteering their time?’ Kath argued that researchers should always build proper costs for involvement into their funding applications and they can find out more about this by referring to the guidance provided by INVOLVE. Because she is self-employed Catherine said that she’d be able to attend more training if her time was paid for, so the issue of payment is something that needs to be thought about. What people got paid for varied – in some cases it was only for taking part in meetings, whereas others got paid for time spent reading. Different organisations take different approaches. For example, Janice knew she would not get paid for being on a research ethics committee, but she does get paid for reviewing grant applications.

People who are on benefits may not be able to accept payments for their involvement work or certain types of expenses. Offering to pay people can be counted as an offer of work, even if the person says no to the payment. There were strong feelings that this was unfair and something the government needed to address. Up-to-date guidance on this is available from NHS INVOLVE. Although many people were in favour of being paid for their time, there were concerns even among those who accepted such payments that it risked making people too professional and motivated by the money, undermining what Peter called ‘the volunteer ethic’. He said, “I think, if somebody is motivated enough to want to do it for nothing, then that's quite powerful. I think as soon as they get paid for it, personally, and it is a personal view, I think things change.” Richard agreed with this, even though he knows some people might see him as already quite professional. Derek explained that he treats each invitation differently; sometimes he is paid and sometimes not. As well as money, people have also had their contribution recognised through ‘in-kind’ benefits, and Kath said it was important for researchers to think about what they’re offering when they invite people to get involved. These could include getting a bursary to attend a conference or training, being able to get academic journal articles or use university libraries. Neil felt the allowance for buying meals needed to be reviewed. He said, “People have got to eat, you know. So it's worth keeping in mind that if you're going respect PPI volunteers who are not in it for the money, at least allow them to eat well.” (See also ‘Reasons for getting involved – personal benefits’).
* An honorarium is a one-off payment made for voluntary services, which you can be taxed on.
 
See also:
‘Representing a range of views and experiences: diversity’
‘Representing a range of views and experiences: being representative’
‘Difficulties and barriers to involvement’
‘Factors which make involvement easier’

Last reviewed July 2017.
Last updated March 2016.