Introduction
Effective patient education requires an approach with a combined effort between healthcare providers and patients in preparing educational resources and programs. This concept is embedded in the current implementation of patient-centered care, an approach to care focused on individuals which are part of the extensive model of personalized medicine to better diagnose and cure patients [
1,
2]. After a review of the current literature regarding the various patient education models, evidence shows a shift from a unidirectional medical-centered model to a bidirectional patient-centered one, where the proactive role of patients is considered more and more essential [
3,
4], with involvement from various healthcare providers.
The importance of patient education is particularly relevant in the field of oncology care, where medical information is very complex, the individualized care is even more complex. Care decision may have significant and long-term implications for patients’ health [
5] as well as their family caregivers. Currently, patient education resources and programs are developed by governmental agencies, scientific societies, and patient advocates in several countries [
6,
7]. Despite this growing trend, some relevant aspects of oncology are not adequately covered by these programs, such as the appropriate communication of the epidemiology of cancer and their implications and of basic and translational research results in promoting diagnosis and treatment, the rationale for developing new drugs and their application in innovative therapeutic protocols, the possible role of integrated authoritative sources, both physical and virtual, to provide patients with reliable information [
8,
9], along with the best ways to promote effective cancer patient involvement [
10].
Many patient education programs show additional concerns, including a lack of integrated and coordinated approach, the paternalistic approach to educating patients (according to a “top-down” approach), and a lack of specific training designed for healthcare personnel. Moreover, there is a lack of data from patient feedback and/or patient survey of needs to assist in designing educational activities [
6,
7]. These and other deficiencies were considered for the development of a recommended model of a global patient education program.
For the development of the global patient education program, the concept of P4 medicine—predictive, personalized, preventive, and participatory—recently changed to “P5 medicine,” with the fifth P standing for the psycho-cognitive aspects [
11], is crucial. The primary objective is to maximize wellness for each individual in every condition rather than simply to treat their disease [
12]. Presently, it is not clear how patients and members of the healthcare community can be aligned to collaborate to achieve the goals of P4/P5 medicine. The National Cancer Institute in the USA and the Organization of European Cancer Institutes (OECI) both acknowledged the necessity for medical institutes to be equipped with infrastructures and programs specifically aimed at the improvement of patient education [
6,
7,
13,
14]. To overcome the lack of strategy and a model, OECI encourages Comprehensive Cancer Centers (CCCs) to develop programs to reinforce and integrate patient education activities [
12] (see the OECI Accreditation Program, Chapter 6). CCCs include both hospitals and academic institutions with a high level of expertise in clinical, laboratory, and population-based research. One of their goals is to establish regular collaboration with other centers in order to exchange information, modify discipline-specific approaches, and integrate various specialties to achieve common scientific and clinical goals so they may represent an appropriate setting for developing patient education models.
To establish such a program, a prototypical Patient Education Committee (PEC) was appointed in 2010 at the National Cancer Institute CRO Aviano, one of the ten Italian CCCs. This PEC is a multi-professional [
15], not hierarchical, team, including medical oncologists, research nurses, psycho-oncologists, pharmacists, biologists, librarians, patients, and volunteers. Patient representatives are key components for the entire patient education process: involved in planning, implementing, testing, and evaluating the various educational activities. Since the elements that constitute a patient-centered educational program may be heterogeneous, the PEC identified six major topics to be covered that are strongly related each other and to the translational research mission of the CCCs. This paper describes all these topics on a point by point basis and gives some key recommendations regarding program implementation in the CCCs and other healthcare facilities. The global aim is to improve the educational competence of patients and to provide professionals with specific strategies for communicating in a way that motivates patients to take action [
16] and strives to reduce the distance between doctors and patients [
17] as well [
18,
19].
Conclusions
Planning, implementing, evaluating, and acting a patient education program requires the effort of many professionals as well as others. The successful patient education program model includes an extension of the idea of personalized treatment using a concept analogous to P5 medicine [
11]; it also requires the involvement of patients from the early stages of program design and multi-professional and interdisciplinary planning. Among the many topics of patient education in oncology, we identified six key issues that take into consideration clinical and translational CCCs research activities and roles. These issues could become an integral part of a user manual containing useful information for establishing an educational program in oncological institutions. CCCs should be pilots in establishing patient education programs involving the entire organization.
In order to insure constant improvement of educational programs and of their ongoing assessment, future developments should consider the creation of focus groups and/or educational sessions and/or classes with patients, systematic feedback from patients and others about the different activities and their utilization so that the activities can be improved. Further implementation goals should involve stronger networking with patient advocacy groups and scientific societies, to avoid overlapping programs and instead encourage collaborative ones and mutual exchanges. In addition, we believe that collaboration between the patient education program and the Office of Continuing Medical Education is required in order to develop educational programs for healthcare providers that take into account patient informational needs, as well as their preferences and priorities.
In conclusion, special attention must be paid to benchmarking. International benchmarking within and outside of Italy regarding the educational activities for patients at CCCs may provide relevant inputs to improving the quality and efficiency similar programs. Wherever this patient education model project has been planned and experimented with, adherence by healthcare providers and patients was reported to be remarkably good. For this reason, it is extremely important to continue on planning future activities, implementing the project and informational offers and services for patients. At the same time, it is essential to create a network of needs assessment surveys to assess stakeholder satisfaction. Therefore, based on initial evaluations, we would like to concentrate our efforts on establishing the most appropriate tools to personalize the approach to the needs of cancer patients. In our view, the rate of success in daily delivery of healthcare could well be determined by patient access to the best diagnostic and therapeutic tools and also by the way institutions respond to a growing demand for a more active role by patients in managing their disease, with the end goal of better quality of life.