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Patient perspective: life in the melanoma patient community and the emergence of the melanoma patient conference

机译:患者观点:黑色素瘤患者社区的生活和黑色素瘤患者会议的出现

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摘要

Imogen Cheese speaks to Sebastian Dennis-Beron, Commissioning Editor: Imogen was diagnosed with melanoma in June 2013 (currently stage 2C no evidence of disease monitored under Professor Mark Middleton at Oxford) and has since created and writes a website blog () as well as founded the melanoma patient conference in 2015. As an impartial event, the patient conference brings together all stakeholders involved in melanoma diagnosis, treatment and care; this includes clinicians, charities and crucially, people living and dying with melanoma. This means the only end goal for the conference are the ongoing needs of patients and families.Imogen's blog has a readership of over 2000 people – many of whom are melanoma patients in the UK. She is prolific in her contact with these patients on social media and as a result of her blog, she has been asked to represent melanoma patients in the UK as their advocacy representative at numerous conferences and events across Europe (including ECC2015 and the MPNE annual events in Brussels). Patients reach out to Imogen on a daily basis asking for support and seeking a means to improve their knowledge and obtain access to better care and information on the latest drugs and trials in the UK.She is a member of the Melanoma Patient Network Europe and speaks daily to over 300 patients on an online support group on social media. Imogen was invited by the British Skin Foundation to support them in establishing a skin cancer specific arm of their charity called ITTakes7 and has worked directly with Melanoma UK on various projects for patient interaction and information gathering. She is connected with Cancer Research UK as a patient representative with the ECMC network and involved with the Oxford hospitals as an advisor for their public engagement and planning.Imogen can be found on twitter at @MelanomaBlog.
机译:Imogen Cheese采访调试编辑Sebastian Dennis-Beron:Imogen于2013年6月被诊断出患有黑色素瘤(目前2C期没有牛津大学Mark Middleton教授监测的疾病证据),并因此创建并撰写了网站博客()和在2015年成立了黑色素瘤患者会议。作为一个公正的活动,患者会议召集了所有参与黑色素瘤诊断,治疗和护理的利益相关者。其中包括临床医生,慈善机构,以及至关重要的是,黑色素瘤的生存和死亡者。这意味着会议的唯一最终目标是满足患者和家庭的持续需求。Imogen的博客拥有超过2000人的读者群,其中许多是英国的黑色素瘤患者。她在社交媒体上与这些患者的接触多产,并且由于其博客的缘故,她被要求代表英国的黑素瘤患者作为其倡导代表参加欧洲各地的众多会议和活动(包括ECC2015和MPNE年度活动)在布鲁塞尔)。患者每天都与Imogen接触,寻求支持,并寻求方法来提高他们的知识,并获得有关英国最新药物和试验的更好的护理和信息的机会。她是欧洲黑色素瘤患者网络的成员,并且会讲社交媒体在线支持小组每天为300多名患者提供帮助。 Imogen受英国皮肤基金会的邀请,支持他们建立其慈善机构ITTakes7的皮肤癌专科部门,并直接与Melanoma UK合作开展了各种项目,以进行患者互动和信息收集。她作为ECMC网络的患者代表与UK Cancer Research UK联系,并作为牛津医院的公众参与和规划顾问参与牛津医院的工作.Imogen可以在Twitter上@MelanomaBlog找到。

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