Exploring the influence of service user involvement on health and social care services for cancer - Attree - 2010 - Health Expectations - UK study

Abstract

Background  Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements.

Aims and objectives  The aim of this study was to explore the influence of the cancer network partnership groups’ service user involvement activities on cancer care.

Design  This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups.

Setting and participants  Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed.

Results and conclusions  The evidence from this study suggests that cancer network partnership groups are at their most influential at ‘grass roots’ level – contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups’ aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital.

Care for Caregivers: Groups Offer a Unique Support for Caregivers - Cancerwise | Cancer blog from MD Anderson Cancer Center

While friends and family may try to offer assistance and support, a feeling of "you don't know what it's like for me" is both common and reasonable.

Journal of Oncology Practice - Home Page - Survey of Cooperative Groups regarding NCI trials

Note: as of the timing of this post, these articles are freely available

Early Release Articles *NEW*

1) Timing Is Everything Zon
2) Challenges to National Cancer Institute–Supported Cooperative Group Clinical Trial Participation: An ASCO Survey of Cooperative Group Sites Baer et al