PPI for Bureaucrats – Five Systems to run a PPI service

Organisations in the UK that engage Public Contributors to coproduce research in the health and social care field have a wide array of obligations. These might be grouped into the following five systems. Each system is described and then the specific responses that apply to Patient and Public Involvement are named. Others may prefer to group the items rather differently, and this does not matter, as the five systems are overlapping and interdependent. Some issues are not mentioned here but may be added later, such as specific approaches to combat modern slavery or achieve environmental sustainability.

Some commentators may heartily dislike these bureaucratic systems and claim that all these needs will be satisfied by warm, trusting relationships, informality and goodwill. They may well be right!

Rights of the individual

It usually helps organisations to be clear about the values that drive it, and here we turn first of all to upholding the rights of the individul Public Contributor, visitor or guest. They have a right to be respected, to have the maximum autonomy, choice and control that is practically possible, and to have their right to privacy upheld. Where opportunities for participation arise, people should have fair access to them.

Values based practice reminds staff of their obligations towards Public Contributors, reinforced for health researchers in their training on Good Clinical Practice. The Research Ethics Committee checks the values and practices that shape the work of research team.

The organisation’s mission

The organisation’s mission should guide decisions about all its activities, including those involving Public Contributors. Management arrangements support both staff and Public Contributors to achieve alignment between mission, activities and outcomes.

Organisations may respond with an Event badge or Photo ID badge that links the Public Contributor to the organisation’s work and reputation. The Code of Conduct defines acceptable behaviour for staff and Public Contributors. Reporting to funders and inspection vsits reminds staff of what is expected in relation to the role of Public Contributors.

Legal and procedural compliance

Regulations designed to manage international migration might be seen to affect the engagement of Public Contributors. This is because a migrant to the UK may commit an offence by working (even if unpaid) without appropriate permission and the engaging organisation may incur a civil penalty also, especially if money is changing hands (see more details here). Unless Public Contributors are defined as working or studying in the UK, they are not affected by these rules.

The organisation must track protected characteristics to meet its Public Sector Equality Duty under the Equalities Act 2010. GDPR sets out the way in which personal information about Public Contributors can be properly managed. Payment arrangements must comply with employment law, welfare benefits and tax regulation.

The Public Contributors Register includes identity checking, contact information and information governance systems. At the request of the Public Contributor, the Register might include the contact details for the person’s Care Coordinator and guidance about the circumstances under which the Public Contributor wishes them to be contacted. Equalities monitoring identifies need for positive action whilst remaining independent of the Public Contributors Register to prevent bias in decision making. The Payment arrangements and reimbursement of expenses systems meet obligations in respect of employment law, taxation and welfare benefits.

Keeping everyone safe

The Management of Health and Safety at Work Regulations 1999 require organisations to undertake a risk assessment and then minimise and manage risks to meet its duty of care under common law.

The Health Research Authority expects research sites to obtain reassurance about the competence, character and indemnification of Public Contributors (Para 9.16d of 2017 guidance from the Health Research Authority here). As far as possible, people should be protected from fire, accident, illness and mental health crisis. The organisation may wish to know who to contact in an emergency on behalf of anyone who regularly enters its buildings.

Organisations may reply to these demands by asking Public Contributors provide References, interview and a DBS check where indicated, leading to a Support and risk mitigation plan where necessary. Public Contributors receive Training in safeguarding, information governance and ethics. Induction and Supervision (these terms are used for clarity but do not imply that Public Contributors are employees). arrangements for Public Contributors and staff mitigate the risks associated with unobserved time and reduce opportunities to abuse others or to steal property or confidential information. Complaints procedures and Insurance cover is in place for times when things go wrong. Individual events take a Register or utilise the Signing In book on Reception and provide Safety briefings (fire procedure etc).

Internal systems

Due diligence obligations require the organisation to create an audit trail for financial transactions. Staff need to stay in touch to let potential and current Public Contributors know about future opportunities for participation and exercise a pastoral duty of care for those with whom they engage.

The Public Involvement Handbook brings together all the policies and procedures outlined above under the direction of a Public Contributors Advisory Group, reporting to the organisation’s Leadership Team. Development support and training is provided to both staff and Public Contributors along with Feedback mechanisms to ensure that the organisation learns from individual and group experiences.

Organisations may respond by drafting a Public Involvement Handbook to bring together all the policies and procedures outlined above under the direction of a Public Contributors Advisory Group, reporting to the organisation’s Leadership Team. Development support and training is then provided to both staff and Public Contributors along with Feedback mechanisms to ensure that the organisation learns from individual and group experiences.

Conclusion and next steps

All five of the systems set out above could play their part in shaping arrangements for engaging and working with Public Contributors. The next webpage focuses upon a few elements drawn from this page that could be used in a registration system for new Public Contributors. It introduces a sliding scale that increases the amount of vetting and checks which are undertaken in proportion to the responsibility carried by the Public Contributor.