Personal health communities: a phenomenological study of a new health‐care concept

Context Fragmentation of care, complexity of diseases and the need to involve patients actively in their individual health care led to the development of the personal health community (PHC). In a PHC, patients can –regardless of the nature of their condition– invite all professionals that are involved in their health care process. Once gathered, the patient and health care team can exchange information about the patient's health and communicate through several functionalities, in a secured environment. Objectives Exploring the use, first experiences and potential consequences of using PHCs in health care. Design Qualitative phenomenological study. Participants Eighteen respondents, consisting of women experiencing infertility (n = 5), persons with Parkinson's disease (n = 6), a gynaecologist, a fertility doctor, a fertility nurse, three Parkinson's specialist nurses and a neurologist. Results First experiences with PHCs showed that patients use their PHC differently, dependending on their condition and people involved. Various (potential) advantages for future health care were mentioned relating to both organizational aspects of care (e.g. continuity of care) and the human side of care (e.g. personal care). Patient involvement in care was facilitated. Disadvantages were the amount of work that it took and technological issues. Conclusions Using PHCs leads to promising improvements in both the organization of care and care experience, according to the participants in this study. They indicate that patients with different diseases and in different circumstances can benefit from these improvements. The PHC seem to be an online tool that can be applied in a personalized way. When (technically) well facilitated, it could stimulate active involvement of patients in their own health and health care. It warrants further research to study its effect on concrete health outcomes.