Monday 21st December 2015
Mac Voice, the magazine for Macmillan professionals: Winter 2015
Ami Salter researched local provision of clinical trials information.
Access to clinical trials information is essential for people with cancer. It helps ensure they are aware of opportunities and supports them in making treatment decisions. Yet access to, and availability of, clinical trials information varies regionally. It can range from general information such as Macmillan’s booklet Understanding cancer research trials, to specific information on trials being conducted locally.
Macmillan information and support centres are a central point of contact for people with cancer seeking information. It is therefore fundamental that they are able to access accurate and reliable clinical trials information, in order to raise awareness of treatment options and to inform decisions.
I conducted local research to understand the standard of clinical trial information provided by Macmillan centres and how this information is managed and processed. I focused on centres within hospital trusts covered by the National Institute for Health Research (NIHR) Clinical Research Network: West Midlands (CRN:WM).
How the research was conducted
A survey was sent to Macmillan information centre managers within the hospital trusts. The survey aimed to establish:
- whether Macmillan centres were provided with regular clinical trials information by the network that could be distributed to patients
- the quality of the clinical trials information
- how clinical trials information is processed and managed
- whether centres promoted the network and the service it can provide for patients.
A literature review was also conducted to help understand the importance of clinical trials information, and how this is (and should be) incorporated within the NHS and the organisations being researched.
Centres that responded were not provided with regular clinical trials information by the network that could be distributed to people affected by cancer.
There were various sources they used to obtain quality clinical trials information. No streamlined process, supported by the network, was applied across the Macmillan centres to ensure clinical trials information was provided for patients, and the management of clinical trials information varied between hospital trusts. Macmillan centres were not able to promote the network and the service it could provide for patients, as they were not provided with the knowledge or information to support these transactions.
Based on the results of the project, it was agreed within the CRN:WM that a clinical trials information resource pack would be put together. This has been developed and provided for each Macmillan centre within the Hospital Trusts covered by the network. It includes:
- contact details for the local clinical trials team and a point of contact for the network
- promotional materials, such as leaflets and display posters for Macmillan centre staff and patients
- recruitment reports and portfolio maps, which detail clinical trials recruitment across our area, allowing centres to tell people about these trials.
The resource pack aims to support the process of distributing clinical trials information to patients, to ensure they are aware of their treatment options. It also aims to encourage collaboration and engagement between the CRN:WM and Macmillan centres, to ensure cancer research is promoted effectively and that awareness is raised of the network and the service it provides.
Email Ami Salter, Project Manager NIHR Clinical Research, Network: West Midlands.