PPI for Bureaucrats – Registration of new public contributors

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Systems for engaging and ‘signing up’ Public Contributors vary considerably from place to place. Each subheading below is an element taken from the ‘five systems‘ framework that might be included in a registration process for new Public Contributors.

Each element is introduced and then tested against the seven core roles undertaken by Public Contributors. An answer is suggested in the table that appears next to each element.

As we discussed in the Introduction (see here), not everyone wants to be a bureaucrat and so there are various options with regard to a formal registration system, as follows:

To the great distress of the bureaucrat, one might do without a formal registration system entirely. This will make things very accessible for people who do not like to fill in forms and commit to joining things. The heavier the burden of registration, the fewer people will engage.
The whole process can be delegated to individual research teams, who then register people in their own way for the particular study that they are running. Some teams may be noncompliant with legal obligations, such as data protection, and research teams are likely to be protective of their own members, denying them access to wider opportunities for contribution, as there is no central database.
A basic registration system could be designed to collect minimum information for all purposes. After this, a bureaucrat would ask people to undergo additional vetting procedures for any high-trust role. This is a proportionate system that has the advantage of keeping access simple for newcomers, but is complex to manage. Alternatively, a lover of informality would use a basic registration system and then take the early stages of involvement as an opportunity to get to know the Public Contributor, abandoning any formal vetting processes and relying on their instinct that the person was OK.
A detailed registration could collect all kinds of information from people at the outset, irrespective of the nature of involvement that they wish to have. This way, everything is covered from the beginning, there is a single entry gate for all, and processing is more straightforward. However, the burden of a detailed registration system will put newcomers off, and discriminate against people who are intially reluctant to contribute, who lack personal documents or who struggle with literacy. Furthermore, by asking people for information that is technically unjustified in comparison with their role, the organisation risks breaching regulations.

Research organisations that involve Public Contributors select between these options, either consciously and expliclty or by default. Not everyone will agree with the detailed analysis set out below, but perhaps it will provoke some useful thought.

Finally, reviewing the registration requirements of neighbouring organisations may help research organisations to create a kind of preferred provider system with them. For example, if the Volunteer Manager at the local NHS Trust collects similar data in their registration process, then the research organisation may choose to admit all registered volunteers who wish to become Public Contributors without asking them to resubmit references and other such verifications.

Personal statement

Some organisations ask the potential Public Contributor to provide information about their talents, experiences and support needs. This will include any special requirements , such as reasonable adjustments for disability, dietary or travel needs and other factors that will help them to make an effective contribution.

Conference attendees do not need to explain why they choose to participate, and the purpose of most focus groups is to hear from a diverse mix of people, so there is no need to obtain a personal statement for these events. For everything else, knowing the person’s interests and experiences helps to match them to the right activities.

However, not everyone believes that a written statement is the best way of acquiring this information, especially from people who make little use of writing, who live with memory loss or who present differently in life and on paper. A conversation may be sufficient, especially for reviewing documents at home.

Contact details

This provides a convenient way of contacting the Public Contributor and inviting them to become involved in future activities. As personally identifiable data held by an organisation, it is subject to the General Data Protection Regulation and so must be collected, stored, transferred and disposed of in the proper manner. Individuals may indicate their preferred mode of communicating with you and have right of access to your record.

Contact details will be captured for all seven core roles undertaken by Public Contributors, so that the organisation can get in touch and offer further opportunities to be involved. A simple and brief Registration form can be used to collect this information, which is then entered into a central register to ensure that the PPI activity is GDPR compliant, and enable everyone who is registered has equal access to new opportunities to participate. Some organisations present this information as a Curriculum Vitae.

ID verification

The Home Office have declared that a migrant to the UK may commit an offence by working (even if unpaid) without appropriate permission. Employers of such individuals have a duty to check that anyone they take on has the right to work. This does not apply to Public Contributors, as set out here.

Although Public Co-Applicants are not usually employed or provided with a contract, the level of responsibility attached to this role is sufficient to warrant asking for confirmation of identity. More details of the role of Public Co-Applicant can be found here.

Next of kin/keyworker

Where people are regularly involved as Public Contributors, the organisation bears some responsibility for holding details of a contact person should a crisis occur, such as an accident or health emergency. This table suggests that roles which require the person to enter the organisation’s premises and establish an ongoing relationship with the organisation justify retaining next of kin data.

In every case, the individual may choose to withhold this information without harming their involvement as a Public Contributor. Equally, some people feel that asking for this information suggests more of a power relationship than an equal partnership, that it diminishes socially isolated people and that it should not be asked until a relationship has had time to form.

At the request of the Public Contributor, the Register might include contact details for the person’s Care Coordinator or other health or social care professional and information about the circumstances under which the Public Contributor wishes them to be contacted.

Equalities tracking

The Equalities Act 2010 sets out a Public Sector Equalities duty which obliges organisations to monitor and take remedial action to correct underrepresentation by groups with any Protected Characteristics. This tracking needs to be anonymised, so that the organisation is free from allegations that the information has been used to discriminate against any particular group.

Bank details

If people are receiving reimbursement of receipted expenses or participation payments, then bank account details are needed, as these transactions are not usually done in hard cash. Payments will be subject to audit and investigations may be made by Her Majesty’s Revenue and Customs in relation to taxation or the National Minimum Wage.

Any of these seven core roles may be carried out by a Public Contributor who refuses to disclose their bank details and rejects the offer of reimbursement of expenses and participation payments, but this table shows the commonest arrangements. Some organisations avoid the need to take bank details by arranging transport on behalf of the Public Contributor and offering a voucher in place of the usual participation payment. Keep in mind that vouchers are generally treated as if they were cash by the tax and welfare benefits system.

Declaration of Offences

Some organisations ask the person to make a self-declaration of offences or other factors that may cause concern. This might include investigations by professional and regulatory bodies, such as the Health and Care Professions Council or an Ombudsman, bankruptcy or other indications of difficulties.

UK law provides for rehabilitation of offenders and requires a suitable justification before asking about such matters – see below on DBS. Public Contributors could be asked if there was anything they wanted others to know in order to make the opportunity a success, but people should only be asked about these offences and investigations where the proposed activities justify it.

The table suggests that risk is high in interviews, although this would only be true if the Public Contributor is conducting a 1:1 interview with the research participant, and would not apply to co-interviewing where the academic researcher remains in the room.

Guidance from the National Institute of Health Research indicates that DBS checks are not needed for staff handling confidential data, so this is not applicable here either (see The Research Passport: Algorithm of Research Activity and Pre-Engagement Checks Research in the NHS: HR Good Practice Resource Pack). A case might be made that an employee would be subject to sanctions and could lose their job, while a Public Contributor has less to lose, so needs a more thorough vetting process, but this argument is rejected.

Co-Applicants bear some responsibility for the overall direction of the project, but everything that they do will be in the company of others, and so there is no need to ask about offending background.

DBS

The law sets a limit on the curiosity of employers and those who engage volunteers. If the level of trust is not especially high, employers are forbidden from submitting an application to the Discloure and Barring Service, and to do so would constitute an offence under Section 5 of the Police Act 1997. By extension, those engaging Public Contributors must take a proportionate approach to DBS checks, and have an active approach in response to managing and mitigating risk for those who do have a criminal record. This risk management approach should not discriminate against offenders by simply barring them from opportunities, but should instead, co-design the approach to keeping everyone safe with the person themselves involved and leading the design process as far as possible.

References

Some organisations seek reassurance that the potential Public Contributor is a fit and proper person, either from a responsible person in a previous role, or a a personal declaration from a friend or associate. Duplicating the arrangements used by the Human Resources Department for employing someone strengthens the case for an Employment Tribunal to consider the Public Contributor to actually be an employee, although some volunteer engaging organisations take up references for volunteers too.

Five of the seven core roles carry potential risk and so it makes sense to seek a recommendation from someone else, that we might consider to be a reference. Some organisations would not feel the need to seek out an independent reference for Public Speakers or Committee members, but simply bear the risk and deal with any difficulties that arise.

Code of Conduct

Setting out a clear statement of expectations helps Public Contributors know what is expected and forms an essential backdrop to any action that may be needed to discharge someone from the role. The principle of coproduction indicates that a Code should be reviewed and amended by each research team and it should hold both staff and Public Contributors to account for their conduct.

The organisation should place as few administrative burdens as possible on people who attend conferences or focus groups. For other Public Contribuotrs, there is an expectation of constructive contribution and some risk to the organisation’s reputation, productivity or mission, so setting out the expectations on all is a worthwhile thing to do. The exception to this is probably the task of reviewing documents at home, as the organisation is exposed to little risk, unless the content of documents is commercially sensitive or confidential information that carries hazards to the organisation’s reputation.

Some organisations ask people to sign a declaration of compliance with the Code. This should only be required when both staff and Public Contributors sign and sanctions apply equally to both groups. Others take the view that this should be codesigned at the early stages of the project, rather than handed down as a fixed set of conditions to which Public Contributors must conform.

Induction training

It is a courtesy for newcomers to the organisation to be introduced to the practical arrangements for coffee, fire drills, the organisation’s mission and who to ask for advice. Particular attention may be paid to Health and Safety obligations. In some settings, Public Contributors attend the same events as new employees. As much of this material relates to attendance at the organisation’s premises, there is less need for this to be offered to people who review documents at home, while people who attend conferences or focus groups as a delegate or speaker will be simply treated as guests.

Some Public Contributors value the opportunity to learn about research methods and evidence based healthcare. In contrast, other commentators are anxious that training will silence the vital ‘outsider’s view and domesticate the challenge of lived experience as Public Contributors learn how to conduct themselves as researchers. If trainining is needed at all, they say, it is academics who need training in how to hear what experts by experience are saying. The moderates favour joint learning, in which experts by training and experts by experience learn together.

Notice again that the language of the workplace, where terms like induction and supervision are frequently used, can creep into Patient and Public Involvement and may be wrongly interpreted to imply that the Public Contributor is employed.

Safeguarding and Information Governance

In addition to induction training for all, some organisations expect everyone associated with them to share the task of maintaining good information governance and upholding safeguarding obligations.

These requirements apply to Public Contributors who handle confidential data and conduct 1:1 interviews with research participants. Other roles provide no real opportunity to cause harm to children or vulnerable adults or to mishandle confidential personal information.

There is a very general sense in which Public Contributors in other roles may witness abuses and so should be aware of the issues and how to respond, but these opportunities are so slight that they really fall into the obligation expected of the general public. The organisation may wish to invite Public Contributors to help with this general surveillance but should not set it as a registration requirement.