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Profile of a patient with ALS
PatientsLikeMe is an online patient network headquartered in . Its website was launched on October 10, 2005 with the goal of connecting patients with one another, improving their outcomes, and enabling research. PatientsLikeMe was inspired by the life experiences of , diagnosed in 1998 at the age of 29 with , or Lou Gehrig’s disease. The company was founded in 2004 by his brothers
and Ben Heywood and long-time family friend Jeff Cole.
After being diagnosed with ALS, Stephen's family founded a non-profit, , in an attempt to slow his disease and treat his symptoms. However, the slow pace of research and the trial-and-error approach was time-consuming and repetitive. They realised that Stephen’s experience was like that of other patients around the world who often have specific questions about their treatment options, and about what to expect. PatientsLikeMe helps patients connect with others who know firsthand what they are going through to share advice and resources. Through a health profile made up of structured and quantitative clinical reporting tools, members are able to monitor their health between doctor or hospital visits, document the severity of their symptoms, identify triggers, note how they are responding to new treatments, and track side effects. They have the opportunity to learn from the aggregated data of others with the same disease and see how they are doing in context with others. Members of the site use social tools such as messageboard forums, private messages, and profile comments to give and receive support from others, a support mechanism that has been shown to help improve their management and perceived control.
PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the company began adding other communities for other life-changing conditions, including
(MS), , , , , , , , , , and
(neuromyelitis optica). The company's approach was to read the scientific literature and listen to patients to identify outcome measures, symptoms, and treatments that were important to patients and could be accurately reported. For example, the development of the MS community involved the development of a new patient reported outcome measure, the MS Rating Scale (MSRS), to ensure patients could accurately determine how their condition was progressing over time. However, building one community at a time was a slow process and the company risked being overly narrow in focus while excluding more than 5,000 patients who had requested new communities as of December 2010.
In April 2011, the company expanded its scope and opened its doors to any patient with any condition. Today the website covers more than 2,000 health conditions, with new members joining daily from the US and other countries around the world. Of note are the more than 7,500 ALS members, who have helped make PatientsLikeMe’s flagship community the largest online population of ALS patients in the world. In the United States, approximately 10 percent of newly diagnosed ALS patients register on the site each month, and 2 percent of all multiple sclerosis patients in the US participate in the community.
PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life and more on an ongoing basis. The result is a detailed longitudinal record – organized into charts and graphs – that allows patients to gain insight and identify patterns. The data-sharing platform is designed to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”. Answers come in the form of shared longitudinal data from other patients with the same condition(s), thus allowing members to place their experiences in context and see what treatments have helped other patients like them. Some communities, such as ALS, feature visual aids such as percentile curves on the patient profile, so that an individual user can see whether their rate of progression is fast, slow, or about average. A seizure tracker for patients with epilepsy helps identify triggers such as missed medication doses, sleep deprivation, or alcohol use, and a "mood map" for patients with mood disorders helps to show different factors underlying their condition such as emotional control, anxiety, or external stress while all users can look for patterns in their daily health status such as day of the week or time of day.
Three studies have been published suggesting that use of the platform improves patient outcomes. A survey conducted in 2010 amongst patients with ALS, MS, Parkinson's disease, HIV, fibromyalgia, and mood disorders found that 72% of users had found the site helpful in learning about a symptom they had experienced, 57% for understanding the side effects of a treatment, 42% in helping them to find another patient like them, amongst others. A second study conducted in epilepsy found that in addition to the earlier benefits reported, patients with epilepsy reported a better understanding of their symptoms (59%), seizures (58%), and symptoms or treatments (55%). The number of benefits they reported from using the site was strongly associated with the number of social connections they made with other members, dubbed the "dose effect curve of friendship". Finally, a third study conducted with the US Department of Veteran Affairs and the University of California at San Francisco reported statistically significant improvements in validated measures of self-management and self-efficacy in veterans with epilepsy as a result of engaging with the site for a period of six weeks.
Just 3-5% of patients with serious health conditions such as cancer take part in clinical trials, due in part to a lack of awareness among patients. One of the first services PatientsLikeMe provided to its members and commercial partners was a "clinical trial awareness" service that allowed targeted messaging about trials for which patients might be eligible, based on their submitted profile data. Patients benefitted by getting accelerated access to clinical trials whereas pharmaceutical companies benefited by shortening their clinical trials by as much as a few months. However, this piecemeal approach only allowed for increased awareness of those trials which were being sponsored by commercial partners, so on June 9, 2011, PatientsLikeMe released a free tool which would show members a list of all the trials worldwide from
tailored to their condition and demographics.
One of the ways in which the site makes revenue is by conducting scientific research studies for pharmaceutical companies, typically with an emphasis on issues that are important to both patients and industry. For example, in 2011 a partnership with Novartis studied the barriers faced by people with multiple sclerosis in being adherent to taking their medication, which led to the development of an MS Treatment Adherence Questionnaire (MS-TAQ) which was made available to help patients and their doctors identify and address these issues through coping strategies and enhanced communication. A 2013 collaboration with UCB explored factors underlying quality of life in epilepsy and identified a number of issues beyond the occurrence of seizures as being important, including symptoms such as problems concentrating, depression, memory problems, and treatment side effects. Such research helps to improve understanding of disease, identify new approaches to management, and generate ideas to improve the products and services developed by pharmaceutical companies.
Following the award in 2013
of $4.5m in grants from the , the company developed an online tool called the Open Research Exchange (ORE) that allowed for the rapid creation, prototyping, testing, and validation of patient reported outcome measures, questionnaires that can establish the impact of symptoms and disease on patients. During the period of the grant, a number of academic collaborators were invited to develop measures on the platform including measures of treatment burden, hypertension management, feelings of satiety in diabetes and treatment burden in chronic illness. The tool offers researchers the ability to rapidly get input from large numbers of patients in a matter of weeks or months
as opposed to much slower forms of research which can take years to complete. A number of tools such as the Treatment Burden Questionnaire
and the Suicide Ideation and Behavior Assessment Tool (SIBAT) have been published in the scientific literature for use by researchers and an editorial co-authored with industry leaders and a researcher at the FDA outlined ways in which PROs developed on the ORE could be used for the development of new medicines. In addition to the traditional scientist-lead instruments, one instrument was developed by a person living with MS.
A key differentiator of the site from more traditional online support groups, messageboards, social media sites and list-serves is the emphasis on structured quantitative data which can be aggregated and used for research purposes. This has permitted PatientsLikeMe's research team to author more than sixty peer-reviewed published scientific articles in collaboration with academic and commercial partners in leading journals such as the BMJ, Nature Biotechnology, and Neurology. In addition, PatientsLikeMe has been mentioned by others in more than 3,000 published articles in the scientific literature and has been featured as a business case study by the Harvard Business Review. The company has also invited researchers to become embedded with the company such as an in-depth study explaining the organization of the platform and highlighting some of the challenges that social media and patient-centred research models are facing.
Wherever possible, PatientsLikeMe has a policy of publishing its research output in open access form, so that patients, clinicians, and researchers can easily access their scientific output. Instruments and questionnaires developed on PatientsLikeMe such as the MS Rating Scale or MS Treatment Adherence Questionnaire are licensed under
so that they can be used freely by the community without complex or costly licensing requirements. The company also provides patients that take part in its studies with "givebacks" which concisely and rapidly give them feedback in lay language as to the results of research in which they have participated so they can understand how donating their data has been useful for research.
The company's best known scientific endeavour relates to an online refutation of a clinical trial in ALS. In 2008, a small Italian study was published suggesting that
could slow the progression of ALS. In response, hundreds of members of PatientsLikeMe with the disease began taking the drug off-label. Using the self-reported data of 348 ALS patients and taking just nine months to complete, PatientsLikeMe conducted a study which demonstrated that lithium did not slow the progress of the disease. The team suggested that online collection of patient self-report data was no substitute for randomized placebo-controlled trials, but it might be a useful new form of clinical research in certain circumstances. A later study described how patients attempted to use the same tools to unblind clinical trials in which they were enrolled to try and see whether or not the experimental drugs they were taking were working.
Describing itself “a not just for profit,” PatientsLikeMe does not allow advertising on its site but rather keeps the site free for users by selling research services as well as aggregated, de-identified data to its partners, including pharmaceutical companies and medical device makers. Typical commercial services include helping to optimize the designs of clinical trial protocols, developing new patient reported outcomes, or identifying the severity of symptoms in specific patient groups. The company enforces transparency about who uses the data and partners have included , , , Avanir Pharmaceuticals and .
In 2007 the company was named as one of the "15 Companies that Will Change the World" by Business 2.0 and CNN Money as well as added to the list of "Top Health IT Innovators" by FierceHealthIT . In 2008 PatientsLikeMe received the Prix Ars Electronica Award of Distinction
and in March featured in a
article entitled "Practicing Patients", by Thomas Goetz, who later went on to feature the site in his book "The Decision Tree". Later in 2008 a television segment with
aired on the . 's 2010 list of Most Innovative Companies ranked PatientsLikeMe at #23. A May 2010
article entitled "When Patients Meet Online”, outlined the potential for advances for research. In 2012
featured a research project conducted in collaboration with PatientsLikeMe on CNN's The Next List, profiling collaborator Dr Max Little. In January 2013, the company featured as a clue on
- "A health data-sharing platform, , was founded by 3 engineers from this Boston-area university, "Initially"; the correct answer, provided by Helen Juvonen, was .
Frost JH, Massagli MP (2008). . J. Med. Internet Res. 10: e15. :.  .  .
Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J (2010). "Sharing health data for better outcomes on PatientsLikeMe.". J Med Internet Res. 12 (2): e19. :.  .
( TED Talk: The Big Idea My Brother Inspired)
. Value in Health. 18: 1–4. :.
"Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform". BMC Medicine. 12: 109. :.
PatientsLikeMe's Publications
Tempini, Niccolò (2015). "Governing PatientsLikeMe: Information Production and Research Through an Open, Distributed, and Data-Based Social Media Network". The Information Society. 31 (2): 193–211. :.
Kallinikos, J Tempini, Niccolò (2014). "Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation". Information Systems Research. 25 (4): 817–833. :.
Fornai, F.; Longone, P.; Cafaro, L.; Kastsiuchenka, O.; Ferrucci, M.; Manca, M. L.; Lazzeri, G.; Spalloni, A.; et al. (2008). "Lithium delays progression of amyotrophic lateral sclerosis". Proceedings of the National Academy of Sciences. 105 (6): . :.
Brownstein CA, Brownstein JS, Williams DS, Wicks P, Heywood J (2009). "The power of social networking in medicine.". Nat Biotechnol. 27 (10): 888–890. :.  .
Wicks P, Vaughan TE, Massagli MP, Heywood J (2011). "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm". Nat Biotechnol. 29 (5): 411–414. :.  .
Goetz, Thomas (March 23, 2008). . The New York Times.您现在的位置：&&>&&>&&>&&>&正文
作者：tomato
来源：生物谷
关键词：阿斯利康,PatientsLikeMe,合作,医疗数据
日讯 /BIOON/ --英国制药巨头（AZN）近日与美国最大病人社交网络PatientsLikeMe签署了一项为期5年的合作协议，获得了后者全球网络的访问权限。阿斯利康表示，将利用PatientsLikeMe的患者报告数据，塑造未来的医药研发，并改善主要治疗领域的患者健康结果，该项合作初步的关注领域包括：呼吸系统疾病、狼疮、、学。
阿斯利康全球研发执行副总裁Briggs Morrison表示，了解患者所经历的每一天，以及患者是如何定义治疗的价值，对于推动科学前沿进入新一代药物的研发至关重要。此次合作将帮助公司利用患者的重要视角、真实世界的实时证据，来支持相关研究和药物开发项目。
PatientsLikeMe表示，此次与阿斯利康的广泛合作，也标志着朝实现患者真正参与科学研究的使命所迈出的重要一步。此次合作将把来自患者的呼声整合进科学开发和运营的中心，根据患者的经历和真实需求量身定制医疗模式以及开发产品及服务。
值得一提的是，这并非PatientsLikeMe与药企首次合作。去年4月，PatientsLikeMe就与瑞士制药巨头罗氏（Roche）旗下基因泰克达成了深度合作伙伴关系，使基因泰克在今后5年可访问PatientsLikeMe全部数据库，这也是病人社交网络同制药企业开展的首次大范围深度合作。（相关阅读：）关于PatientsLikeMe：
PatientsLikeMe网站是一家病友社区平台，用户在这里可以寻找与自己症状相似的病友，相互分享病情病历及治疗方法等信息，从而提高医疗效果。在这一过程中，产生的关于疾病真实状况的数据，可帮助研究者、制药公司、监管机构、医药服务提供商、非盈利组织开发更有效的产品、服务和护理。
在2012年，PatientsLikeMe网站曾被美国麻省理工学院(MIT)《科技评论》杂志评为最具有变革意义的50家公司之一。
目前，PatientsLikeMe网站用户量超过32.5万人，患者在网站共享病情、治疗方法等信息。该网站建立了多个病人社区，规模最大的是纤维肌痛、多发性硬化症以及肌萎缩侧索硬化症(ALS)，整个网站所讨论病症问题多达2000种。（生物谷）
英文原文：AstraZeneca and PatientsLikeMe announce global research collaboration
Five-year agreement focused on improving health outcomes for patients across main therapy areas
In a major step forward to make patient-centric evidence a cornerstone of scientific discovery and development, AstraZeneca and PatientsLikeMe have signed a five-year agreement to provide access to PatientsLikeMe’s global network in support of AstraZeneca’s patient-driven research initiatives.
AstraZeneca will use patient-reported data from PatientsLikeMe to shape future medicine development and help improve outcomes across its main therapeutic areas, with an initial focus on respiratory disease, lupus, diabetes and oncology.
“Understanding what patients are experiencing every day and how they define the value of their treatments are fundamental to our ability to push the boundaries of science in developing the next-generation of medicines,” said Briggs Morrison, EVP Global Medicines Development, AstraZeneca.
“Our partnership with PatientsLikeMe will help us to harness the important perspectives of patients through their advanced technology and real-world, real-time evidence to support our research and development programmes.”
Ed Godber, Executive Vice President of Life Sciences Ventures, said the wide-ranging collaboration with AstraZeneca also marks a significant step in realising PatientsLikeMe’s mission to make patients true partners in science.
“It’s rare to find a partner so committed to listening to and integrating the patient voice into the heart of its scientific development and operations. We’re excited to work together to transform the discovery and healthcare model and develop products and services tailored to what patients experience and truly need.”
PatientsLikeMe? is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies.
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职业人士不可错过的十大垂直社交网站
文章来源：IT经理网
发布时间： 14:35:38
社交网站是大众社交网站的天下，无论是国外的Facebook、Twitter还是国内的新浪微博、腾讯、人人等。但是对职业人士来说，使用大众社交网站更多出于营销的目的，很难实现真正高效率的社交沟通。近一段时间垂直社交网站风生水起，正是为了能更好地满足各种细分用户需求。本文介绍的十家国外垂直社交网站也许对国内的互联网和企业信息化人士来说有不少能够借鉴的地方。一、IT专业社交网站：IT Center Station&&IT中央站（）是面向IT专业人士的社交平台，专注于IT产品评测分享。&二、教育社交网站 Learnist号称教育行业的Pinterest。用户可以在Learnist上添加各种web资源，例如博客、Feed源、视频等。教育工作者可以在上面快速创建课程和课件。&三、房地产社交网站 Honest Buildings的定位是成为房地产专业人士和物业服务商的联系纽带。目标是降低业主和物业服务商之间的合作沟通成本，提高效率。&四、物理学家圈子 Doximity是面向物理学家的社交网络，提供符合HIPAA规范的安全协作平台。物理学家第一次注册时需要经过三步实名认证，一旦通过就可以与同事间进行安全通讯。&五、政府官员社交网站 GovLoop是面向政府的社交网站，该网站的目标是：“连接政府、改进政府。”目前GovLoop已经有超过5000名政府官员用户，通过该网站访问公共博客、论坛和供应商列表等。&六、金融职业社交网站 IdeaPlane为金融等高度规范化的行业的职业人士提供了一个高度安全的社交网络环境，用户可以发布个人资料、更新状态、寻找专家、参加群组以及整合新闻源等。IdeaPlane最近被文档共软件公司Workshare收购。&七、病患互助网站 PatientsLikeMe是三名MIT工程师2004年创办的网站，会员可以分享治疗和病症信息，相同疾病的患者还可以参加群组讨论。&八、匿名协作网站 Social Number是一个匿名协作社交网站，所有的用户的身份帐号都是6-10位数字，Social Number的目标的未人们提供一个自由表达的空间，而无需担心泄露个人信息。&九、儿童社交网站 Grom Social如今有很多面向年轻人的社交网站。则尤其特别，其创始人Zach只有11岁。Zach创办Grom Social的原因是他父亲禁止他上成人社交网站，而其他面向儿童的社交网站在Zach眼里又太“小儿科”。&十、宠物社交网站 Catmoji很多人经常花数小时在视频网站上查看“喵星人”的萌宠视频，而面向爱猫人士的Catmoji就是一个可供用户分享和发现猫咪图片和视频的宠物垂直社交网站，架构看上去很像Pinterest。
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