Implementing a service users' framework for cancer care in primary care: an action research study

We previously facilitated the development of a service-user designed framework for providing proactive care for people with cancer in the community.

To validate this framework in clinical practice.

We used an action research approach, helping five diverse general practices in the South of Scotland to implement the care framework. The process and outcomes were evaluated using in-depth interviews (18 patients and their family carers and 49 health professionals), participant observation and an ongoing dialogue between the practices, the research team and the original user groups.

Practices implemented the framework in a variety of ways. In general, they used their own customized cancer register to improve communication within the practice and began to offer proactive care from a diagnosis of cancer, not just when the disease became advanced. Local innovations included an intranet-based register, information sheets and regular multidisciplinary meetings. Patients, family carers and professionals suggested that the framework had helped achieve continuity of care, teamwork, proactive care and improved support and information for patients and carers.

Proactive personalized care can be improved in primary care for patients with cancer and their family carers through flexible adoption of a framework to embrace key characteristics of good care, as perceived by patients and carers, throughout the illness. Practices can achieve this by choosing approaches suited to their setting, experiences, structure and resources.