National Cancer Information Service in Italy: An information points network as a new model for providing information for cancer patients

Abstract

The international literature data report that good information and communication are fundamental components of a therapeutic process. They contribute to improve the patient-health care professional relationship, to facilitate doctor-patient relationships, therapeutic compliance and adherence, and to the informed consent in innovative clinical trials. We report the results of a multicentric national initiative that developed a 17-information-structure network: 16 Information Points located in the major state-funded certified cancer centers and general hospitals across Italy and a national Help-line at the nonprofit organization AIMaC (the Italian oncologic patients, families and friends association), and updated the already existing services with the aim to create the National Cancer Information Service (SION). The project is the result of a series of pilot and research projects funded by the Italian Ministry of Health. The Information Service model proposed is based on some fundamental elements: 1) human interaction with experienced operators, adequately trained in communication and information, complemented with 2) virtual interaction (Help line, Internet, blog, forum and social network); 3) informative material adequate for both scientific accuracy and communicative style; 4) adequate locations for appropriate positioning and privacy (adequate visibility); 5) appropriate advertising. First results coming from these initiatives contributed to introduce issues related to "Communication and Information to patients" as a "Public Health Instrument" to the National Cancer Plan approved by the Ministry of Health for the years 2010-2012.

Making patient centered care a reality: a survey of patient educational programs in Italian Cancer Research and Care Institutes

“…PE activities were defined as follows: 1) Classes: meetings with patients and caregivers on cancer topics held by healthcare personnel [ 31 ]; 2) PE handouts, i.e., “Works consisting of a handout or self-contained informative material used to explain a procedure or condition or the contents of a specific article in a biomedical journal and written in non-technical language for the patient or consumer” (MeSH/Medline definition) [ 32 , 33 ]; 3) Cancer Information Services (CIS) that offer information via free and confidential one-on-one interaction with trained information specialists about cancer and support services to cancer patients, their family and friends, the public and healthcare professionals ( http://icisg.org/ ) (e.g., Patient Library) [ 26 , 34 – 37 ]; 4) educational programs for HCWs on specific issues such as communication, relationship with the patient, narrative medicine, etc. [ 38 ]; 5) wellness classes (e.g., gymnastics, cooking activities, meditation lessons, make-up, etc.…”

Patient-Centered Cancer Care Programs in Italy: Benchmarking Global Patient Education Initiatives

“…Considering that patient education is a complex concept, we subdivided the development of the program into simple steps based on the following key elements: Health literacy : The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Mesh, i.e., PubMed Medical Subject Headings’ definition). To fully understand the degree of health literacy in patients and their need of further information on health matters, it is essential to carry out investigations addressed to different population targets [ 20 , 21 ]. Empowerment : A process that helps patients gain control over their lives, increasing their capacity to act on issues that they themselves define as important; a process through which patients individually and collectively are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and take action to meet those needs [ 22 ].…”

Alliance Against Cancer, the network of Italian cancer centers bridging research and care

“…Given its proven feasibility and the interesting data collected, this methodology will be extended to other cancer centers and to other cancer types at the national level [ 8 ]. Facilitate SION improvement and expansion to meet the increasing demand for information [ 9 ]. …”