患者视角:黑色素瘤患者社区的生活和黑色素瘤患者会议的出现。

IF 16.4 1区 化学 Q1 CHEMISTRY, MULTIDISCIPLINARY Accounts of Chemical Research Pub Date : 2017-05-01 Epub Date: 2017-05-19 DOI:10.2217/mmt-2017-0011
Imogen Cheese
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引用次数: 0

摘要

伊莫金于2013年6月被诊断出患有黑色素瘤(目前是2C阶段,牛津大学的马克·米德尔顿教授没有监测到疾病的证据),自那以后,伊莫金创建并撰写了一个网站博客(www.melanomarollercoaster.co.uk),并于2015年创办了黑色素瘤患者会议。作为一项公正的活动,患者会议汇集了参与黑色素瘤诊断、治疗和护理的所有利益相关者;这包括临床医生、慈善机构,最重要的是,还有黑色素瘤患者。这意味着会议的唯一最终目标是患者和家属的持续需求。伊莫金的博客拥有2000多名读者,其中许多人是英国的黑色素瘤患者。她在社交媒体上与这些患者进行了大量的接触,由于她的博客,她被邀请代表英国的黑色素瘤患者作为他们在欧洲许多会议和活动中的倡导代表(包括ECC2015和布鲁塞尔的MPNE年度活动)。患者每天都向Imogen寻求支持,并寻求一种方法来提高他们的知识,获得更好的护理和英国最新药物和试验的信息。她是欧洲黑色素瘤患者网络的成员,每天在社交媒体上的一个在线支持小组中与300多名患者交谈。伊莫金应英国皮肤基金会的邀请,支持他们建立一个名为ITTakes7的慈善机构的皮肤癌专门分支机构,并直接与英国黑色素瘤协会合作,开展各种患者互动和信息收集项目。她作为ECMC网络的患者代表与英国癌症研究中心有联系,并作为牛津医院的公众参与和规划顾问参与其中。伊莫金的推特账号是@MelanomaBlog。
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Patient perspective: life in the melanoma patient community and the emergence of the melanoma patient conference.

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 (www.melanomarollercoaster.co.uk) 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.

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来源期刊
Accounts of Chemical Research
Accounts of Chemical Research 化学-化学综合
CiteScore
31.40
自引率
1.10%
发文量
312
审稿时长
2 months
期刊介绍: Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance. Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.
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