Introduction - Tom Lynch & Amanda Bingley
The charity Macmillan Cancer Support are in process of creating an online ‘virtual library’ on their website accessible to people with cancer at any stage in their illness or recovery, their relatives and carers and also to health professionals involved in caring for people with cancer. The library will consist of published or internet based writings by people who have experienced cancer and or their relatives or carers. The library will contain extracts from a range of published writings; such as books including prose and poetry as well as excerpts from internet writings and web logs, web links and newspaper diaries.
The most important aspect of the project is that the ‘virtual library’ website will be a resource for people with cancer and their relatives or carers and also for professionals. As part of the process of creating the virtual library Macmillan has funded a public consultation exercise, (click here to view this document), conducted by International Observatory on End of Life Care (IOELC) researchers Tom Lynch and Amanda Bingley. We are consulting with and hearing the opinions of individuals with cancer (at any stage of their illness and recovery), their carers and support group facilitators about which published writings and authors they have found particularly helpful (or not!) and the kinds of writings they might imagine finding useful if they were easily accessible on a website. We have also consulted with hospice librarians, specialist book suppliers and web reviews about the most popular published writings.
The ‘virtual library’ public consultation builds on previous work we have completed over the last 2 years with Macmillan in which we analysed and reviewed published professionals’ writings (since 1975), and patient’s and carer’s writings (since 1950), identifying the kinds of major concerns and experiences described including any changes over time in approach to treatment, experience with medical staff, family relationships and so on. See the links to other Macmillan Narratives Projects on the top right of this page.
The public consultation exercise will be completed at the end of March 2006. Macmillan will be creating the website for the ‘virtual library’ in the next few months http://www.macmillan.org.uk
