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15. Adapting the approach to your budget

If you are keen to carry out experience-based co-design (EBCD) but are concerned about accessing sufficient resources, this section outlines the costs involved and explains how to adapt some elements of the process.

Implementing EBCD is largely an investment of existing staff time to facilitate the process, but it typically includes the following types of cost:

  • facilitator (typically 40 per cent wte for six months)
  • travel (for patients and carers to attend the interviews and various events)
  • Patient and Public Involvement expenses (if paying for patient & carer involvement – see INVOLVE guidelines
  • NHS staff time (to attend interviews and various events)
  • event catering
  • equipment and/or external expertise (video camera and/or editing expertise).

How much a project will cost depends on the capacity and experience within your organisation. If you have experienced facilitators and video-making skills internally, your costs will be far lower than if you pay for external expertise. In one project, it was patients themselves who carried out the filming (see Case study 1: Running EBCD in a mental health inpatient service). Similarly, once you have run one project, your costs will reduce as you can build on existing expertise.

It is not essential to stick rigidly to the EBCD approach set out in this toolkit, so do not feel constrained by the methodology. However, it is advisable to retain the central elements of the approach – the patient interviews and interaction between the patients and staff – as these are the elements that identify problems and develop the solutions. However, it is possible to adapt even these parts, either to create a pared-down version of EBCD or to run a separate process that does not claim to be EBCD but that draws on elements of the approach.

The most resource-intensive stages of the process are interviewing and filming the patients and then editing the interviews. The film is a very powerful tool that establishes priorities, motivates staff, and gives patients a voice. It enables patients to be their own messengers rather than having others talk on their behalf. On film, patients often talk more frankly than they might otherwise. However, an accelerated approach, which uses stock films instead of filming its own service users, has produced positive results (see below).

Accelerated EBCD

Rather than filming its own patient interviews, the accelerated form of EBCD uses patient films from the archive at Healthtalk. The approach was tested in lung cancer services and intensive care units in two NHS hospital trusts. The evaluation found that even though the films did not include relevant local detail, they still served the purpose of ‘triggering’ discussion. The resulting improvement activities were similar to other EBCD activities, but were achieved more quickly and cheaply. (For details, see Case study 4: Using archive film to develop an accelerated form of EBCD, and visit the National Institute for Health Research website.)

Key points

  • The cost of your project will depend on which elements you include. One project used in-house video editors, borrowed the videoing equipment, and was resourced entirely by existing staff. Its only costs were the editors’ time, refreshments and patient expenses. Another, which used experienced researchers from an outside organisation, cost substantially more. Always weigh up the value of the potential benefits against any costs.
  • The observation stage adds value to the project, but it is not essential. However, it is a cost-effective way of adding valuable insights, and can provide a useful opportunity for recruiting participants.
  • You could save money by avoiding using external consultants in the interviewing and filming stages. Perhaps someone within your organisation has these skills or is keen to learn. However the interviewer must not be someone who works within the same service.
  • If patient videos already exist on topics that relate to the service or condition that you are focusing on, consider using the accelerated approach.
  • It is important that staff voices are heard, but you could elicit these through a focus group instead of one-to-one interviews.
  • The co-design groups form a crucial, and relatively cost-effective, part of the EBCD process, which avoids making changes that do not quite ‘hit the mark’. However, if you want a pared-down approach and have already identified one issue, you could set up just one co-design group to focus on that particular topic.
  • If it is difficult to run several parallel co-design groups, you might choose to have one patient reference group that meets regularly, with whom staff could regularly consult on progress. However, do make sure the patient voice is not lost in the process.
  • The key to getting the most value out of your EBCD project is to make sure you have buy-in from staff early on in the process. This will help ensure that the changes that participants identify are actually driven forward, so that however much money, time and emotional effort you do invest, it will result in positive change.
  • Ultimately, value must be assessed in terms of positive, sustained outcomes. It is important to think about what the key priorities are in terms of your service. For example, do you want to reduce the number of complaints or readmissions? By calculating how much it currently costs you to manage an ongoing problem, you can calculate how much you would save if that problem were overcome.