The work of 1000 Lives Plus, Wales’s national healthcare improvement programme, has repeatedly emphasised the need to include patients in the design and delivery of services. The use of ‘Stories for Improvement’ in NHS boardrooms and on the front line is one example of how focusing attention on the patient enables identification of problems within the system.

Including patients and citizens in service design and delivery is increasingly seen as desirable for a number of reasons, primarily because by reducing waste and ensuring better use of resources it will lead to improved quality and a better patient experience. Patients are often the best placed to identify things that are not working, and will often have clear and direct ideas on how to improve them.

Delay in receiving information, treatment and aftercare is a huge issue identified by patients across the system. Health process engineering needs to consider shortening the system so that the interventions that are of value to the patient are triggered sooner: there is often a huge difference between being admitted into a place of care and then actually receiving treatment. Access is only part of the issue; delays inside the system account for significant wastage.

Patients often report there is very little value in much of the time they spend in hospitals, clinics or attending other appointments. The staff are usually caring and courteous, but until patients start receiving effective treatment, care is ineffective in actually resolving patients’ health issues.

Analysing the real-life experiences of patients helps to determine what a patient wants and expects from healthcare. There is an important distinction between care provision based on the patient’s needs, and care provision based on the limitations of service. Healthcare that is based around patients going to the provider – for example, attending a clinic to see a specialist – can be inconvenient and unhelpful for patients.

It is no coincidence that healthcare organised in this way is bedevilled by wastage in the form of missed appointments, patient non-adherence with treatment, missed diagnoses and multiple instances of ‘repeat work’. It creates a culture of dependency, increasing the number of interactions between chronically ill patients and healthcare providers, and ultimately increases the likelihood of harm caused by healthcare.

Most people working in healthcare have patients’ best interests at heart. However, organisations’ established operational procedures can take over, encouraging staff to follow the processes of healthcare that have been devised – for example, standard outpatient appointments. In this way staff and patients become part of a system with its own aims and outputs, such as seeing all the patients in a clinic before 5pm, arranging repeat appointments when information is missing from the file, and repeating tests that have already been done elsewhere because staff cannot access the results.

Instead, healthcare staff should always be thinking about what the patient wants and needs from that appointment – not what the system needs and wants! Where possible, the system should always be designed to deliver what the patient needs and not the other way round.

Patient-centred care may look different in practice, but the underpinning theory and commitment to providing the highest possible quality in service should be present in every different flavour of healthcare. This kind of service improvement cannot be driven as a top-down initiative. Staff should be equipped and empowered to make changes. Bureaucracy (the needs of the system) that prevents staff from improving services needs to be stripped out.

Assessing the care pathway (the patient’s journey through the system) means actively identifying and making:

  • changes in the patients’ environment, to enable them to maintain their independence
  • changes in the way healthcare is provided
  • changes in methods – with an understanding of how new medicine and methods influence the process and the cooperation between caregivers
  • changes in technology that might not be understood by the patient.

All four of these points can be made much easier by asking patients for their opinion. Patients can identify ‘gaps’ in the system and places where communication between care providers could be improved. Simple questions about the usability of new technology can help prevent people becoming ‘cut off’ from care when new systems are introduced.

Dr Alan Willson is a director of 1000 Lives Plus, Wales’s national healthcare improvement programme, www.twitter.com/dralanwillson

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