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Gepubliceerd in: Quality of Life Research 4/2014

01-05-2014 | Commentary

Let’s engage the patient within us: a personal perspective on patient engagement

Auteurs: Carolyn E. Schwartz, Madeleine King, Mirjam A. G. Sprangers

Gepubliceerd in: Quality of Life Research | Uitgave 4/2014

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Excerpt

Whereas this new emphasis is a laudable development, it also implies that researchers and patients are essentially different. There is an ‘us’ versus ‘them’. Yet many of us have been or still are patients, and many more of us have cared closely for an ill or injured friend or family member. Whether as patients or caregivers, most of us have navigated through the healthcare system, experiencing its labyrinths, contradictions, and discontinuity of care. Along the way, we may have witnessed healthcare dilemmas that defied easy treatment decisions, either for ourselves or for our loved ones. To quote Susan Sontag:

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” [1].

We believe that our research will benefit from acknowledging this dual citizenship. If we welcome the patient within us to inform our research—our discussions with colleagues, our study objectives, our protocol design and procedures, our interpretations—then our work will not only be more clinically relevant but it will also be more genuine and perhaps closer to the true needs of patients as opposed to the interests of academics. …
Literatuur
  1. Sontag, S. (1978). Illness as metaphor (p. 3). NewYork: Farrar, Straus, and Giroux.
  2. Miller, S. M., & Mangan, C. E. (1983). Interacting effects of information and coping style in adapting to gynecologic stress: Should the doctor tell all? Journal of Personality and Social Psychology, 45(1), 223–236.PubMedView Article
Metagegevens
Titel
Let’s engage the patient within us: a personal perspective on patient engagement
Auteurs
Carolyn E. Schwartz
Madeleine King
Mirjam A. G. Sprangers
Publicatiedatum
01-05-2014
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 4/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0580-9

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