A Patient Passport for COPD – Putting patients in control to manage demand

Key note: Incorporating patient and carer perspectives of COPD into a COPD passport can inform self-care interventions and lead to improvedoutcomes

In short: Self-care is an important component of national COPD guidelines and strategy yet little is known about the key messages patients and carers need to enable them to engage, and to drive appropriate standards of care. We worked with patients and carers to develop the COPD passport. The passport informs patients of the markers of a quality service and empowers them to engage in self-care interventions that can release value.

Key driver:COPD and asthma outcomes strategy impact report suggests potential self-care savings of £350 million over 10 years

The challenge:People with a long term condition such as COPD can improve their health and have a better quality of life by taking a more active role in their own care. But to do this, people need self-management skills and access to information about their condition. They also need skilled support and motivation from their clinicians, and access to high quality, evidence based care.

What we did: Patients and carers from 24 localities across NHS North West were invited to attend an interactive networking event facilitated by service experience experts. At the event personal reflections of experience and feelings were captured and shared in table top discussions to identify common themes and differences. A core pathway was then developed and used to engage whole group discussion on the development of key messages. The resulting 10 key messages were then mapped to national COPD guidelines, standards and strategy and refined into the seven steps of the COPD patient passport. The passport was used to measure adherence to quality standards – including self-care interventions as experienced by patients.

Benefits:

  • Provides insight into patient and carer viewpoint of COPD quality standards
  • Can be used to measure patient experience of quality and value COPD interventions
  • Simple, patient held document that provides key self-care interventions and links to British Lung Foundation helpline for on-going support
  • Empowers patients to drive best practice in COPD

Learning points:

•Listening to patients and carers experience and feelings about the care they received led to the creation of the COPD patient passport

•Pooling the knowledge and experience of clinicians and patients means the passport is evidence based and mapped to quality standards

•Access to self-management action plans and pulmonary rehabilitation – the most important self-care interventions – needs to improve.

•Working with a patient organisation led to:

•rapid feedback on the seven steps

•relevance and acceptability to a wider patient group

•ability to measure adherence to quality standards

•access to patient helpline

The next steps:

The passports have now been printed and distributed to all CCGs in the NW region. Audit of adherence to the seven steps is continuing and will provide localities with relevant data to inform service development/ improvement.We are promoting the passport alongside BLF nationally.

At the listening event patients were keen to increase their influence in promoting best practice in respiratory care. We have therefore developed a patient leader programme in collaboration with BLF to train patients to become local respiratory champions. The first 10 patients have completed the programme and we are evaluating the impact.

Find out more:

Preeti.Sud

Project manager North West Respiratory Clinical Pathway Team

NHS North West