This is the first of six linked pages that together address issues of interest to a mythical ‘bureaucrat’ who wishes to develop administrative systems to run a Patient and Public Involvement system in a research organisation. All six pages are listed below, together with the links to reach each page.
- Introduction – this page
- Seven Roles for Public Contributors
- Five Systems to run a PPI service
- Administering the Five Systems
- Registration for new Public Contributors
- Perks for Public Contributors
Patient andPublic Involvement (PPI) is an approach taken in UK research, especially in the fields of health and social care. Patients, carers and the public who traditionally would have been confined to being merely the subjects of research, being weighed, measured and interviewed to provide evidence for academic researchers to analyse, are now taking their rightful place as coproducers of research. In these pages, they are called Public Contributors, although many other terms are used too (for a discussion of what to call people, click here).
This group of webpages explores the administrative arrangements for involving experts by experience in coproducing research. It is needed because in many organisations that carry out research, public contributors occupy a liminal space where their status is ambigiuous. They receive payments, but are not employed; give their time freely, but are not volunteers; analyse data, but are not overseen by the organisation’s Data Controller. Sometimes they conduct interviews, but are not regulated by a professional body; they carry out important tasks that affect the organisation’s reputation, but do not appear on the risk register. And so one might go on.
So these webpages attempt to look through the bureaucrat’s eyes and consider what could be set in place to address the concerns that trouble such a person. They are worried about what might go wrong, and so put systems in place to ensure immigration laws are upheld, data is managed within the GDPR, safeguarding duties are discharged appropriately and public funds are properly accounted for.
Bureaucrats look back in time, to find out whether systems are in place to control who enters a building, committee or a payroll. They also look forward in time, to consider who receives a benefit, a perk or a reward – or who is quite simply trusted to visit a library, sit at a desk or view a computer screen. These webpages will link together the background checks ongoing management arrangements and perks received by Public Contributors to suggest a proportionate system that meets obligations, whether they arise from the Information Commisisoner’s Office, financial audit department, Disclosure and Barring Service or elsewhere.
Of course, bureaucrats are not universally adored. A straw poll of local arrangements suggests that few, if any organisations that engage Public Contributors in PPI activities have worked through all these factors and created an administrative response to each.
Informal arrangements have much to commend them, especially when researching the circumstances of offenders or trying engage people who don’t like filling in forms. However, it is worth looking through the bureaucrat’s eyes to find out what the rest of us prefer to ignore. Perhaps the Beatles were right, and ‘love is all you need’, but let’s just dare to consider the world according to the bureucrat for a few minutes, as it might be informative.
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