PPI for Bureaucrats – Seven Roles for Public Contributors

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Our friendly bureaucrat would probably start their analysis with an exploration of the priorities of the organisation, but instead, we start here with an analysis of the core roles of the individual Public Contributor. This will help newcomers to the field get a firm grip on the tasks involved, and will be used later to help consider the bureaucrat’s concerns regarding security checks, accountability and risk management.

The following listing describes seven core roles that a Public Contributor may take up in relation to an individual research project. It is immediately apparent that this list does not include being a research participant, because the focus is on coproducing the research, rather than providing data.

Most Public Contributors are invited to carry out a mixture of these seven core roles, but it makes sense to separate out the individual components, as each one carries its own frieght in terms of organisational risk, and so will shape the future requirements for accountability, audit and compliance.

In broad terms, the organisational risk increases as one moves down the list although the pattern varies sometimes, as individual settings, research topics or sensitivities affect the precise details of an individual role description and therefore the trust and risk associated with engaging the Public Contributor. So, for example, if the confidential information being handled (role 6) is merely names, while the interview topic (role 5) is sensitive, then these activities change places as the interview is much more risky. As risk and trust increases, then there should be a corresponding increase in vetting and support arrangements, as we shall see later.

Role 1: Review document at home

Remote document review draws in views from people who are too geographically distant to attend meetings, who are unable to leave their home and who have commitments reducing their availability to attend events. This group of Public Contributors will generally be literate and comfortable with managing electronic documents. They may also be research application reviewers, and so bring these insights. However, their contribution can be blended with the offerings made by many others, and decision makers can filter and set aside any unsuitable remarks prior to sharing with anyone else.

Role 2: Attend conference or focus group

Conferences and focus groups are one-off events deemed to be in the public domain. If the material that is covered is ‘commercial in confidence’ or sensitive, then it falls into the Committee member category below.

Role 3: Public Speaker

Public speakers have power to influence public perception of the organisation since they can speak spontaneously and be heard by a large audience without prior filtering. This also applies to material which is published on social media. The Code of Conduct sets out the behaviours which are expected in relation to these roles.

Role 4: Commitee member

While Public speakers may be involved on a single occasion, committee members have an ongoing influence on the success of the project and can influence its shape over its lifetime. Agenda items may be confidential to the group.

Role 5: Interview patients

Some would redefine this role and those below as waged positions. Adjustments may need to be made to such paid roles to make them accessible to some people with lived experience. However, this document proceeds with the view that these roles are legitimate for unwaged Public Contributors. NHS procedures consider patients to be vulnerable and insist on vetting arrangements, so there is a process by which suitable Public Contributors may be provided with a Letter of Access, enabling them to interview NHS patients for research purposes. Risk is reduced if an employed academic researcher works alongside the Public Contributor to conduct a ‘Two on One’ interview – see here for a guide to this approach. See more on getting permission to collect research data here.

Role 6: Handle confidential data

NIHR guidance (see Table 1 of this document on page 6) indicates that people carrying out this task do not need DBS checks. We might wonder if this is a typing error as the trust involved in handling confidential data requires careful vetting and support.

Role 7: Co-applicant

Co-applicants may attend the Trial Steering Committee (that reports to the funder), Data Management and Ethics Committee or Project Management Team. Some may also recruit other Public Contributors, chair meetings and act as the Staff Host. For these reasons, the level of risk and trust is high.