title: Personal health communities: a phenomenological study of a new health-care concept.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  Exploring the use, first experiences and potential consequences of using PHCs in health care.
  
  
  METHODS
  Qualitative phenomenological study.
  
  
  METHODS
  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.
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.
authors.forename: Johanna Wilhelmina Maria
authors.initials: JW
authors.lastname: Aarts
authors.affiliation: Institute of Health Policy & Management (iBMG), Erasmus University Rotterdam, DR Rotterdam, the Netherlands.
authors.forename: Femke
authors.initials: F
authors.lastname: Vennik
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.
authors.forename: Willianne L D M
authors.initials: WL
authors.lastname: Nelen
authors.affiliation: Department of Neurology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.
authors.forename: Martijn
authors.initials: M
authors.lastname: van der Eijk
authors.affiliation: Department of Neurology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.
authors.forename: Bastiaan R
authors.initials: BR
authors.lastname: Bloem
authors.affiliation: Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.
authors.forename: Marjan J
authors.initials: MJ
authors.lastname: Faber
authors.affiliation: Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.
authors.forename: Jan A M
authors.initials: JA
authors.lastname: Kremer
mesh_terms: D000328:Adult; D000368:Aged; D057286:Electronic Health Records; D005260:Female; D006282:Health Personnel; D055991:Health Records, Personal; D006801:Humans; D007247:Infertility, Female / Q000628:therapy; D020407:Internet; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000628:therapy; D010348:Patient Care Team; D010358:Patient Participation; D036301:Qualitative Research; D012648:Self Care
keywords: Internet; health reform; patient empowerment; patient participation; quality of care