An exploration of stakeholders’ perceptions of the extent to which the individual and collective views of patients with long-term conditions and their carers are heard and used to inform commissioning decisions within primary care

Background Involving patients and carers in decisions that influence the delivery of health services is a statutory requirement across the NHS. However, current evidence suggests a gap exists between the theory, legislation and policy intentions and their practical implementation.

Aim This research aimed to identify the nature and extent of that perceived gap.

Method Adopting a mixed-methods approach using questionnaires and semi-structured interviews, stakeholders’ perceptions were explored regarding the extent to which the views of patients with long-term conditions and their carers are heard and used within primary care, across four clinical commissioning groups. Descriptive statistics were used to analyse the quantitative data; thematic analysis was applied to explore the qualitative data.

Results Data analysis demonstrated considerable difference between patients’ and carers’ perceptions and those of healthcare professionals regarding how well involvement is implemented. Three key themes emerged that were perceived to influence the effectiveness of involvement. These related to the need for effective communication of relevant, accessible information that meets people’s requirements; the need to take account of individuals’ expectations, ability, motivation, assumptions, and previous experience; and the need for organisations to provide effective systems and processes, including adequate time and focused training to support involvement, in addition to robust monitoring and evaluation of the extent to which outputs from involvement influence commissioning decisions.

Conclusion The literature suggests that no existing framework addresses all three key themes. Therefore, a revised framework for involvement was developed, informed by the three key themes, that can be tested across a larger sample and different healthcare settings.