PPI Unit I 2015

The origins of patient and public involvement can be found in the 1970s, when consumerism in society gained strength as a movement, challenging traditional power relationships. It was characterised by enthusiasm for more empowering and participatory forms of social action and decision-making, and for greater openness and accountability on the part of public sector organisations.

By the 1990s, this had begun to influence healthcare policy and research. It was claimed that the interests of patients as health service users and as taxpayers would be better served if they could influence the design and conduct of research. By 2001, the UK Government was recommending that ‘participants or their representatives should be involved wherever possible in the design, conduct and reporting of research’.

Another possible influence is the growth in public scepticism of research following the Bristol and Alder Hey scandals. Patient and public involvement in research now has influential champions such as Dame Sally Davies and Prof Ian Chalmers.

Underpinning values

Ives et al. identify two categories of motivation for patient and public involvement in research:

1. Pragmatic/outcome oriented: PPI is a means to an end i.e. it improves the relevance and quality of research.

2. Ideological/process oriented: PPI is an end in itself i.e. it reflects democratic and ethical principles.

There’s a third motivation that is not value-driven: researchers involve patients and the public because they are required to, usually by the grant-funding body they are applying to.

Let’s examine these in more detail.

1. The pragmatic argument: patients’ experiential knowledge of illness and health care will be beneficial to research, therefore it is useful.

2. The moral imperative: patients/the public have a right to be involved in publicly funded research that may impact on their health and services; it improves the transparency and accountability of research.

3. Ticking the patient and public involvement box to get a grant, without necessarily believing in it.