13th July 2017 Blog

"The question is not if patients should be remunerated, but how"

Employment • Inequality • Lived experience •

This recent BMJ blog explores the topic of paying patients to advise on health research, policy and service design. I was surprised to discover that there was still a debate about whether to pay patients or not!

The question of whether to pay people who bring ‘expertise from experience’ to research is nothing new. I have seen it countless times when doing Patient and Public Involvement (PPI) work in research.

However, in mental health research I would expect researchers with even a basic understanding of PPI would see paying people for attending something like a steering group or commissioning panel as uncontroversial.

We understand that many people who experience mental health problems are economically disadvantaged and some are unemployed. It therefore seems exploitative to expect people to offer their expertise for free, particularly if everyone else at the same meeting is receiving a salary.

Of course some people do not want to be paid for their contribution, for any number of reasons. That is a position that I respect, but this should be a choice, not a condition of being involved.

Not ‘if’ lived experience should be paid, but ‘how’

I would argue that the main reasons for not paying are often logistical, rather than financial or ideological. One respondent quoted in the BMJ blog summarises it as: “the question is not if patients should be remunerated, but how”.

The cash value of involvement payments are insubstantial compared to the size of the average project grant, but making those payments requires time and patience. The first problem is the inflexibility of organisational payment systems (such as those found in the NHS or universities).

These systems are often ill-equipped to deal with involvement payments that tend to be small, made to individuals who are not on payroll, and often best paid in cash. Many organisations are now aware of the problem and are developing better ways of dealing with it. However it can still take skillful navigation of bureaucracy, tenacity, and the occasional bit of creative accounting on behalf of the research team.

Working within benefits boundaries

The second, more frustrating, problem is working within the boundaries of the benefits system. For many people affected by mental health problems, benefits are their main or only source of income.

The various types of benefits (e.g., pension credit, housing benefit, council tax relief) restrict individuals from earning money in different ways. How the different benefits interact, and how the system chooses to interpret the rules in individual cases can often feel arbitrary.

This makes it difficult for people to accept even small payments for involvement. The fear of punitive action means that many people who receive benefits are discouraged from any kind of involvement activity.

In other cases, individuals may only understand the benefits implications once they have accepted a payment. Obviously we want to avoid causing frustration, stress and fear, especially given the impact that can have on people’s mental health, but we are not benefits advisers. Avoiding paying people altogether is the easiest solution, but it isn’t the right one.

For the (often junior) researcher who is charged with these tasks, making payments to advisers can be a thankless, and resource intensive, task. It is understandable why researchers are put off from doing it. But without it we limit the pool of people who can provide their expertise, and therefore undermine the research we are doing.

Re-evaluating public and patient involvement

Perhaps the solution is in re-evaluating the value of PPI, and seeing it as part of the essential infrastructure needed to support research.

Research infrastructure is a multi-million pound business in itself. There is huge investment in data systems, biobanks, laboratories, but little in solving the problems facing PPI.

True, INVOLVE have published guidance on how to budget for involvement, the Research Design Service offer the Enabling Involvement Fund to support involvement activity, and the National Institute for Health Research provides a confidential Benefits Advice Service. These are all useful additions, but they are little more than patches and work-arounds.

There is no glamour in solving such problems; individual universities or NHS Trusts have little incentive to prioritise finding a solution. Few people are interested in how to develop payment systems to make them more efficient.

Few people came into research to help people process permitted work forms to present to the job centre, but most researchers do aspire to improve people’s lives. As researchers we cannot do that unless we involve people in our work. In many cases that means sorting out these issues on a case by case basis.

Making our payment process faster

At the McPin Foundation, we have been working to make our payment processes faster, easier to use, and tailored to individuals’ needs. We still find it challenging and problematic.

There are times when we cannot find a way through the thicket of benefit rules to allow us to pay someone who wants to stay involved in a project. But we believe the value of public and patient involvement in health research, especially mental health research, outweighs the frustrations.

Not offering payment demonstrates that we do not value this expertise. If we cannot compensate people for their time then we risk silencing those who most need to be heard.

I am therefore less interested in debating the terms for payment in public involvement, and more in how we can build the infrastructure to make it happen.


Terms of engagement for patient participation. Tessa Richards, 5th July 2017.