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共同创建一个在线患者公共社区研究中心:一项探索英国国家卫生研究院(NIHR)研究倡导者观点的定性研究。

Co-producing an online patient public community research hub: a qualitative study exploring the perspectives of national institute for health research (NIHR) research champions in England.

作者信息

Hoverd Eleanor, Staniszewska Sophie, Dale Jeremy, Spencer Rachel, Devrell Anne, Khan Dena, Lamouline Carrol, Saleem Sanya, Smith Pam

机构信息

Academic Primary Care, Warwick Medical School, Warwick University, Gibbet Hill Rd, Coventry, CV4 7AL, England.

Warwick Medical School, Warwick Research in Nursing, Warwick University, Coventry, England.

出版信息

Res Involv Engagem. 2024 Feb 16;10(1):26. doi: 10.1186/s40900-024-00556-4.

Abstract

BACKGROUND

Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers' everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes' (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known about how HEIs can best do this. Our aim was to develop a university website for patients and members of the public to learn about ways to get actively involved in research and be able to access the results of health and social care research.

METHODS

This project involved working as partners with five National Institute for Health and Care Research (NIHR) Research Champions. NIHR Research Champions are volunteers who raise awareness and share experiences about health and social care research. Content of a prototype Patient Public Community Research Hub website was co-produced with the Research Champions, and then 15 NIHR Research Champions from across England were asked for their views about the website.

FINDINGS

The information collected told us that the Patient Public Community Research Hub was viewed as being beneficial for increasing visibility of PPIE opportunities and sharing the findings of studies though needs further work: to make the information more user-friendly; to improve the methods for directing people to the site and to create new ways of connecting with people. It provides a foundation for further co-development and evaluation. A set of recommendations has been developed that may be of benefit to other HEIs and organisations who are committed to working with patients and members of the public.

摘要

背景

患者及公众参与和介入(PPIE)应融入研究人员的日常实践。然而,这可能具有挑战性。作为高等教育机构(HEIs)基础设施的一部分,为PPIE创建数字化平台可能是支持这一目标的一种方式。这有助于向患者和公众提供信息,但对于高等教育机构如何才能最好地做到这一点,人们了解得相对较少。我们的目标是开发一个大学网站,供患者和公众了解积极参与研究的方式,并能够获取健康与社会护理研究的结果。

方法

该项目与五位国家卫生与保健研究机构(NIHR)研究倡导者合作开展。NIHR研究倡导者是志愿者,他们提高对健康与社会护理研究的认识并分享相关经验。一个患者公众社区研究中心网站原型的内容是与研究倡导者共同制作的,然后邀请了来自英格兰各地的15位NIHR研究倡导者对该网站发表意见。

研究结果

收集到的信息表明,患者公众社区研究中心被认为有助于提高PPIE机会的可见性并分享研究结果,不过仍需进一步努力:使信息更便于用户使用;改进引导人们访问该网站的方法,并创造与人们建立联系的新方式。它为进一步的共同开发和评估奠定了基础。已经制定了一系列建议,可能对其他致力于与患者和公众合作的高等教育机构及组织有益。

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