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 her 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.
It can be hard talking about cancer, but it’s a way to help others now Stephen can’t train as a doctor.
Having a long-term condition is tiring, so Catherine has to budget’ her time. She finds it easier to be involved through email.
The main cost for Sharon is time. Seeing the research done gives her hope.
Hazel has seen good people leave if they feel they’re not properly involved.
Jennifer doesn’t mind spending the time on getting involved, but she would like her expenses reimbursed promptly, just to show her work is appreciated.
There is quite a time commitment involved. Travel is always covered but some people may need childcare costs and other expenses such as printing and phone bills.
Margaret feels shes giving something back for previous research participants who made her care possible, and improving treatment for future patients.
Dave G would not want to feel like a paid employee. Enjoying the work is all the reward he wants.
Margaret doesn’t feel how she is valued depends on whether she is paid. She puts in a lot of hours but she can always say no.
It’s nice to get a bit of payment but it would never be Nadeem’s main reason for getting involved.
Being paid is important to Francesco. He sees his skills as something valuable to researchers.
Helena feels lots of excuses are used not to pay people for involvement, but it is exploitative not to offer payment and limits who can get involved.
For Carolyn, paying people for involvement shows it’s valued. It’s important to fund it properly to get a more diverse group of people involved.
Paying people for their involvement gives them equal value and status. People can donate what they’re paid to charity if they wish.
Costs for involvement should always be built in. Working people may not be able to take part otherwise.
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.
Not offering payment excludes some groups of people. But the government needs to address the problem of it affecting their benefits.
Mary feels paying people for involvement should always be included in grants. She does not see why she should not be paid just because people on benefits cannot be paid.
Alan has changed his mind. He used to think payment would attract people for the wrong reasons’ but now thinks it’s essential for some.
Richard feels it’s right to be paid for involvement but it’s not enough to make a living. He doesn’t think people should do it for the money
Derek puts many hours into involvement, often unpaid. But if people want him to take part in a demanding committee as an equal he expects to get an honorarium* or to be paid for it as work.
* An honorarium is a one-off payment made for voluntary services, which you can be taxed on.
‘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.