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JRSM Open. 2017 Nov 9;8(11):2054270417738511. doi: 10.1177/2054270417738511. eCollection 2017 Nov.

Patient-centred outcomes research: perspectives of patient stakeholders.

Author information

1
Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia 19104, USA.
2
Johns Hopkins University School of Medicine, Baltimore 21205, USA.
3
Johns Hopkins University Bloomberg School of Public Health, Baltimore 21205, USA.
4
University of Rochester Medical Center, Rochester 14642, USA.
5
Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia 19104, USA.
6
Abramson Cancer Center, University of Pennsylvania, Philadelphia 19104, USA.
7
Urology, Department of Surgery, Perelman School of Medicine, University of Pennsylvania, Philadelphia 19104, USA.
8
Corporal Michael J. Crescenz VAMC, Philadelphia 19104, USA.
9
Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia 19104, USA.

Abstract

Objective:

To elicit patient stakeholders' experience and perspectives about patient-centred care.

Design:

Qualitative.

Setting:

A large urban healthcare system.

Participants:

Four patient stakeholders who are prostate cancer survivors.

Main outcome measures:

Experience and perspectives of patient stakeholders regarding patient-centred care and treatment decisions.

Results:

Our patient stakeholders represented a diverse socio-demographic group. The patient stakeholders identified engagement and dialogue with physicians as crucial elements of patient-centred care model. The degree of patient-centred care was observed to be dependent on the situations. High severity conditions warranted a higher level of patient involvement, compared to mild conditions. They agreed that patient-centred care should not mean that patients can demand inappropriate treatments.

Conclusions:

An important attribute of patient-centred outcomes research model is the involvement of stakeholders. However, we have limited knowledge about the experience of patient stakeholders in patient-centred outcomes research. Our study indicates that patient stakeholders offer a unique perspective as researchers and policy-makers aim to precisely define patient-centred research and care.

KEYWORDS:

Qualitative research; communication; patients; prostate cancer

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