Development of interactive empowerment services in support of personalised medicine

Abstract

In an epoch where shared decision making is gaining importance, a patient’s commitment to and knowledge about his/her health condition is becoming more and more relevant. Health literacy is one of the most important factors in enhancing the involvement of patients in their care. Nevertheless, other factors can impair patient processing and understanding of health information: psychological aspects and cognitive style may affect the way patients approach, select, and retain information. This paper describes the development and validation of a short and easy to fill-out questionnaire that measures and collects psycho-cognitive information about patients, named ALGA-C. ALGA-C is a multilingual, multidevice instrument, and its validation was carried out in healthy people and breast cancer patients. In addition to the aforementioned questionnaire, a patient profiling mechanism has also been developed. The ALGA-C Profiler enables physicians to rapidly inspect each patient’s individual cognitive profile and see at a glance the areas of concern. With this tool, doctors can modulate the language, vocabulary, and content of subsequent discussions with the patient, thus enabling easier understanding by the patient. This, in turn, helps the patient formulate questions and participate on an equal footing in the decision-making processes. Finally, a preview is given on the techniques under consideration for exploiting the constructed patient profile by a personal health record (PHR). Predefined rules will use a patient’s profile to personalise the contents of the information presented and to customise ways in which users complete their tasks in a PHR system. This optimises information delivery to patients and makes it easier for the patient to decide what is of interest to him/her at the moment.

A Qualitative Investigation on Patient Empowerment in Prostate Cancer

“…Furthermore, initial information on cancer disease may be offered through eHealth platforms, helping the patient to formulate and note relevant questions prior to medical consultation (Kondylakis et al, 2014, 2015). A possible implementation of these suggestions in a comprehensive cancer platform for patient empowerment is provided by Kazantzaki et al (2016) and by Renzi et al (2016).…”

Hereditary lobular breast cancer with an emphasis on E-cadherin genetic defect

“…Given the relevance of uncertainty in patient’s empowerment and clinical outcomes and considering the crucial role of patients’ decision-making in becoming empowered the psychological interventions in these patients should be twofold: help them manage the psychological implications of a genetic mutation and the resultant medical interventions,82 improving coping skills, quality of life and decreasing distress by means of psychological support or psychotherapy, and by supporting them in the decision-making process 83. Both interventions are strictly interrelated, since a good management of the patient’s emotional and psychological state has a strong impact on the decision-making process.…”

Training Cognitive Functions Using Mobile Apps in Breast Cancer Patients: Systematic Review

“…Nowadays medicine is evolving considering not only the patient's physical safety but also in prevention with a personalized approach to disease [68,69]. From the patient empowerment perspective, it is very important to give breast cancer survivors reliable means to improve and train their cognitive functioning because of the huge impact of cognitive complaints on the quality of life and patients empowerment [70]. Moreover, women with breast cancer may benefit from using a mobile or web-based tool to improve their cognitive functioning, to effectively manage their daily activity and to properly cope with everyday difficulties.…”