• Open Access

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

Authors

  • Johanna Wilhelmina Maria Aarts MD PhD,

    Gynaecologist in Training, Corresponding author
    1. Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands
    • Correspondence

      Johanna W. M. Aarts, MD PhD

      Department of Obstetrics and Gynaecology, route 791

      Radboud University Nijmegen Medical Centre

      PO BOX 9101

      6500 HB Nijmegen

      the Netherlands

      E-mail: a.aarts@obgyn.umcn.nl

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  • Femke Vennik MSc,

    Researcher
    1. Institute of Health Policy & Management (iBMG), Erasmus University Rotterdam, DR Rotterdam, the Netherlands
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  • Willianne L. D. M. Nelen MD PhD,

    Senior Researcher
    1. Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands
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  • Martijn van der Eijk MSc,

    Researcher
    1. Department of Neurology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands
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  • Bastiaan R. Bloem MD PhD,

    Professor, Neurologist
    1. Department of Neurology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands
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  • Marjan J. Faber PhD,

    Senior Researcher
    1. Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands
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  • Jan A. M. Kremer MD PhD

    Professor, Gynaecologist
    1. Department of Obstetrics and Gynaecology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands
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Abstract

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.

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