Preparation
Preparation and planning for success 

This section emphasises the importance of clear planning and identifies issues which need to be addressed at an early stage in the process to increase the likelihood of successful patient and public involvement. 

Develop an Action Plan

Think about how patients and the public are to be involved. Where possible ask people for their preference. Various options exist and these include one-to-one meetings, group meetings or written feedback. Each method has both advantages and disadvantages and selection must be based on patient/public choice, timescale available, resources – including people, finance, venue hire (where applicable) and remuneration.

Ascertain how participants would like to be contacted – for example, by telephone, letter or email. Determine the format that participants would like their information to take. For example, would they prefer hard copies or email? If printed, what font size would be suitable?

Roles and responsibilities

Ensure that all people involved in PPI have clearly defined roles and responsibilities. Participants need to be clear about what their role involves and about what they are being asked to do. Staff members also need to understand their remit and what is expected from them in terms of workload, specific roles (such as leadership or recruitment) and commitment.

Identify a point of contact

A clearly identified and easily accessible person needs to be appointed to act as a point of contact for participants.

Preparation and training of participants

Make sure that participants receive the information required to help them with their involvement.

The information should be relevant to their role and responsibilities, and presented in a format suited to the participants. As an example, this may include details about finance so that they may learn about the financial constraints within which a service operates. This, in turn, may mean that they do not have unrealistic expectations about how services might be changed. Care must be taken to make certain that information given does not unduly influence participants’ opinions.

Assess training requirements of participants and ensure that these needs are met prior to commencing involvement. Assessment of training needs should be undertaken on an individual basis and steps taken to deliver the training as soon as possible. Training may be required in relation to understanding documentation, terminology, financial matters, how the organisation operates, in addition to any technical training which may be required dependent on the focus of the PPI.

Training should be delivered using appropriate methods and targeted at the right level for the participants. For example, an informal group discussion might be appropriate when introducing documentation, whereas more formalised training involving experts might be necessary when an understanding of more complex issues (such as finance) is required. 

Remuneration

Not all participants will expect, or want, remuneration but it is important to clarify this at an early stage prior to involvement. If participants are to be paid then agreement of both parties must be reached in terms of type, amount and frequency of payment. Some participants may prefer not to receive remuneration in a format which could impact upon their benefit entitlements. As a minimum, all participants should be able to claim travel expenses and payments to cover their caring responsibilities where appropriate.

Prepare to meet participants' needs

Some participants may have particular needs that should be accommodated. This might relate to providing support for communication (for example aphasia friendly communication), accessible venues, loop systems, frequent breaks, and consideration of the likelihood of causing distress. Ensure that appropriate systems are in place in anticipation of any possible impact that involvement might have on the participants and, where appropriate, their carers.

Ethical Considerations

Involvement in implementation activities should benefit, and not harm, participants. Potential participants must be given information both verbally and in a written format (such as a leaflet) to enable them to make an informed decision about their involvement. Some of the information requirements will include making people aware of the time commitment involved, the workload, expectations (on both sides), and the potential impact of their involvement on themselves, on others, and on services. They should be given a named contact whom they may approach with questions.

Involvement must be on a voluntary basis. It should be made clear that people are free to leave or withdraw from the PPI process without penalty in any form. The topics of confidentiality and anonymity must be addressed and agreed with participants. Make certain that participants are clear about who their information and contact details will be shared with and also who might contact them.

Organisation and credibility

Ensure that paperwork is distributed prior to meetings where possible, so that participants have time to prepare their responses. Paperwork and other forms of communication should be presented in a professional format. This is seen to give credence to the experience and suggests that it is valued.

Paperwork must be accessible to the participant group and consider alternative means of distributing information – for example audio or video. With participants’ agreement technological methods such as email, may be used providing participants have access to these facilities.

Realistic expectations

Clearly set out expectations at the beginning so that all participants (including staff members) are aware of what is expected from their participation. Make sure that details, such as frequency and duration of meetings, are clear from the start. It is also important to ensure that participants have realistic expectations of what might result from their participation and are also aware of the limitations of the process.