Three basic kinds of information resources (reference materials) are needed to operate a CIS:
- cancer information reference materials to help staff answer questions
- lists of community resources and materials you can send to enquirers such as printed patient information materials
- links to approved patient information websites and apps
Cancer Information Reference Resources
For consistency of service it is important that staff are clear about what resources they can use to help them answer inquiries.
Some CIS services use pre-prepared information and restrict staff to using only these to answer questions. If you choose to use this method you will need dedicated staff to create, catalogue and update these materials. You will also need to have processes in place to ensure that the resources are of good quality. These materials could be accessed in print or through a computer based system.
Several CIS programs use external advisors to fill specific roles. Some serve as credible sources for researching answers to difficult questions. Others may be experts who review developed resources. For example, librarians, physicians for each cancer type, and persons who understand rare tumours can be advisors. If you plan to use outside experts, you need to clearly define their roles, the parameters of the information you will be seeking, and the way in which you will use that information.
Other CIS choose to give all staff the skills to look up information from a variety or resources to help them answer questions. To do this, staff need to be trained in how to use appropriate databases (e.g. PubMed) effectively and critically evaluate the information they find. CIS staff with a health and social care background can often be quickly trained in these skills.
It will also be useful to have access to information about support services in the geographical area your CIS serves. These might include counselling services, support groups, organisations that can provide financial assistance and organisations or groups who provide non-conventional medicine advice and support.
You will need a clear policy on the types of organisations you are prepared to sign post and how you will assess organisation to help you decide whether to include them on your list.
Patient Information Materials
A great deal of good patient friendly cancer information has already been written. Before you begin writing or planning to publish your own material, check out our list of ICISG Member Organizations to see what patient information materials may already be available, including those produced in a variety of languages.
Many organisations will copyright their patient information materials, so always seek permission from the author before translating or redeveloping their material for your own purposes.