Rasiah Jananee, Manafò Elizabeth, Krawec Kiara, Nielssen Ingrid, Amirav Israel, Macphail Emily Cm, Lavigne Lise-Anne, Asis Sheila
Patient Engagement Platform, Alberta SPOR SUPPORT Unit, Alberta, Canada.
Faculty of Health Disciplines, Athabasca University, Alberta, Canada.
J Patient Exp. 2020 Dec;7(6):973-977. doi: 10.1177/2374373520925245. Epub 2020 Jun 29.
The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners and researchers online. AB4HR was developed in response to an identified need-a user-friendly online forum for both patient partners and researchers to access, so that they can better work together, as partners, in health research. We codesigned AB4HR and identified ways to improve the form, fit, and function of an existing registry through discussion groups with patient partners and researchers. We found 3 main themes derived from the perspective shared by patient partners and researchers. Patient partners and researchers agreed that the existing registry provides a forum to connect with one another in an easy, low-barrier way. However, there were opportunities for improvement with AB4HR, including possibilities for greater interaction between patient partners and researchers to promote more collaborative partnerships.
艾伯塔省患者导向研究人员支持战略及患者导向研究试验单位的患者参与(PE)平台工作人员开发了一个由患者推动的PE网络,称为艾伯塔健康研究网络(AB4HR);这是一个增强工具,用于在网上更好地连接患者合作伙伴和研究人员。AB4HR的开发是为了满足一种已确定的需求——为患者合作伙伴和研究人员提供一个便于使用的在线论坛,使他们能够作为合作伙伴在健康研究中更好地合作。我们通过与患者合作伙伴和研究人员的讨论组共同设计了AB4HR,并确定了改进现有注册系统的形式、适用性和功能的方法。我们从患者合作伙伴和研究人员共同的角度发现了3个主要主题。患者合作伙伴和研究人员一致认为,现有注册系统提供了一个以简单、低门槛的方式相互联系的论坛。然而,AB4HR仍有改进的空间,包括患者合作伙伴和研究人员之间加强互动以促进更多合作关系的可能性。