This week sees the latest instalment in a complex set of steps en route to offering patients and the public payment for their involvement in our work.
We have now published online the policy by which we can – and indeed do – make this offer to all such members of Patients Active in Research (PAIR) – our strategic advisory group. I am keen to publicise this in part as it’s been such a struggle to get here and it may be helpful for other organisations in similar positions to see what solutions we have found.
I won’t go back over the reasons why I believe it is important to offer payment – I covered some of these in my blog in February but I will sum up some of the key things I have learnt along the way from finance, HR and other colleagues, which aren’t core to the strategy but may be useful tips – whether you are trying to do what we’ve done, or a patient/public member who may be considering accepting payment:
- Never underestimate how long it will take to agree on a payment policy…
- There will be a lot that has to go in, but keep it as simple as you possibly can – and hence as short
- Try to find a colleague who can help with the administration of payments – or, if this falls to you, keep a list of the steps you need to follow, the forms you need to use, the folk you need to tell – and make sure it is recognised that this is no small extra task you have taken on
- Be aware that people may want to accept (or decline) payment without their decision being known by others; find ways to make this possible
- If, like us, you have to make patient and public payments through your organisation’s payroll, reassure those on the receiving end that emergency rate (i.e. high!) tax will not automatically apply, and reassure the self-employed that they can opt out of pay-as-you-earn (PAYE) with a simple declaration
- Never leave it to chance if you are on benefits and thinking about accepting payment for involvement: those involved with NIHR research can and truly should seek advice.
Reading the above list may in some small way explain why, when I wrote in February that we were to launch our policy in April, I was over-optimistic: it took us until June to have the mechanics in place, and until now to feel able to go public with the mechanism, having shared it and indeed started to use it with our patients.
We are now working with our themes and working groups to help them budget for involvement within their own activities. While I was able to set aside some resources to pay PAIR members, we are aware that it may take a while before research teams can confidently offer payment. Though, deep down, I suspect that for most, the sums needed are relatively small compared with research budgets, but that we are still, at least in places, winning hearts as well as minds on the basic principle.
Many patients and members of the public choose to decline payment even when it is offered, their reasons ranging from the understandable complexity of accepting it if they are on benefits, through to feeling that they do or have worked and earned for other things in their lives, but this they want to give, without financial reward.
I respect those who decline payment, and those who accept it. I have had a few recent instances when asking PAIR members to do some really quite meaty tasks and been relieved to know that they had a timesheet, and that this task was firmly on it. Partnership working of the sort we are striving to promote somehow feels more equal if the conversation about money has at least been had.