Top Ten Tips for involving patients, carers and public in your work
Starting off as you mean to go on: open and respectful communication from the start create a participative impression and purpose. In meetings insist on full introductions, name badges (avoid the use of professional titles) and opening exercises if people are meeting for the first time. Be very clear about what you want the involvement for; feedback and consultation are quite different from ideas and plans generated by partnerships. The latter is not necessarily better, but requires different management.
Understand each others’ motivation and interests early on: spend some time finding out why and what people want from the involvement, from all perspectives. This will need to be an explicit exercise, consider what ‘gains’ there may be for people involved in terms of increased skills and understanding, are there training opportunities within your organisation that people can benefit from? If need be, develop a specification or role description for the involved people.
Think about the practicalities: what are the barriers to people getting involved? Think about your venue, health venues can speak volumes! Village halls, community centres, local authority rooms are more neutral, and can be had at reasonable fees. It may be more convenient to have the workshop on your front door, but what about everyone else? Always be prepared to go to where the people are if need be. Make a practicalities list for example; access to venue, travel provision, caring responsibilities, carers accompanying participants etc and address them.
Get a budget: you cannot involve people and not expect to pay their expenses, carer costs and payment for their time. Make provision for these costs, it can be a complex area, especially when people are benefits, but there are websites that give advice www.invo.org.uk
Ensuring that groups or partnerships are effective: develop an explicit plan (these are sometimes called groundrules, or terms of reference) for how you are going to work together effectively, make sure it is clear and understood by all, it might cover communication issues or values underpinning the work. Be clear about the role that you would like the patients/carers/public to undertake, write this together….it will help manage expectations and provide a clear focus for the activity. Consider a ‘neutral’ chairperson for groups/meetings, who is good at working with diverse groups of people. Ask about any training/information issues to support involvement, and follow through. This could range from a phone call ahead of meetings, summary documents or access to IT facilities.
Try to look at what you do with fresh eyes: Ask someone to observe your meetings and interactions, ask them to comment on the way chairing or facilitation styles, appraise information used such as handouts/slides, do they make sense? Is there an implicit level of understanding required? Ask them to look out for non verbal communication, secondary conversations etc in the group, this may indicate dissatisfaction with proceedings.
Get the balance right: working together requires a certain pace but also a sensitivity to peoples’ contexts. Set realistic goals and be prepared to be flexible, real life gets in the way for all of us…
Don’t be afraid of conflict: think about how you would manage difficult conversations and decisions. Have a chat with a colleague, or even rehearse how you are going to manage these. If we want involvement to be meaningful we have to listen fully to people’s experiences, however challenging that may be; use the ground rules to help groups navigate potential conflict in a respectful and mature way. Conflict can often bring about the most interesting of developments within groups, and be a creative force.
Always promote networks and peer support: provide contact lists for each workshop/meeting, and allow plenty of time for networking and discussion (data protection remember to get permission from the group to do this). Remember to keep the patients/public groups in the communication loop regarding the development of the work, even if there is nothing much to say. Agree a pragmatic communications schedule, explore social media for opportunities.
Provide supporting materials: don’t assume anything…materials should be clearly presented, dated and the source acknowledged. Use at least font size 12 (minimum requirement for the visually impaired) and be careful with colours, black text on pale colours works best for readability. Don’t be afraid of using visual images and pictures to illustrate points, and communicate concepts. Examples could be glossaries and explanations of key concepts, briefing notes for meetings, background and context documents, presentation handouts