建构病患创新的关键在于运用大数据


  【24drs.com】白宫科技政策办公室健康创新与科技资深顾问Claudia Williams表示,研究界需要病人参与,不是因为新规则要求,而是因为患者向我们展示了前进的方向。
  
  Williams负责欧巴马总统的精准医学计画,她在加州史丹佛生物医学大数据2016年研讨会中提出了几个例子。
  
  第一位是来自辛辛那提的Erin Moore,她的儿子Drew在2010年出生时患有囊状纤维化,Moore提倡透过这些家庭建构一个网络而帮助研究与照护。Moore在儿子出生后不久,开始参与囊状纤维化基金会的筹款,最后被推举担任俄亥俄州宣传主席。
  
  当她开始与国会山庄内的政策决定者进行会议时,Moore解释,我从不同的制高点意识到在系统中的障碍,为了我的孩子,我需要系统能够更好地运作。囊状纤维化是一个渐进性和致命的疾病,而且我也没有时间在国会山庄和政客们争论他们要做什么。
  
  她致力于在囊状纤维化方面帮助辛辛那提儿童医院的「慢性病协同照护网络(Collaborative Chronic Care Network (简称为C3N))」,并且为C3N和囊状纤维化基因会建立合作关系,促成了在辛辛那提的囊状纤维化照护网络,而且这个中心的创新将会被共享,全国各地都将受益。
  
  C3N整合了研究者、家庭、医师,为囊状纤维化建立一个理想的照护计画,更重要的是获得的结果、以及如何衡量变化是否等同于改善。
  
  Moore表示,这些措施并不仅是为了所有病人和家属,我们的一个优先考虑是:欢乐的劳动力。对这个社会来说,重要的是,我们的健康照护提供者在他们的所作所为中感到愉悦,不会因无法运作的系统而不堪负荷。
  
  Williams也引述了犹他大学计算机学院助理教授Matt Might,他的儿子Bertrand患有相当罕见的NGLY1缺乏症这个遗传疾病。
  
  Williams表示,医师告诉Might和他的太太Cristina Casanova,他们不知道其它还有谁患有这个疾病,所以这对夫妇无人可以讨论相关处置、治疗,毫无希望。
  
  那时,Might在部落格写了一篇爆红的文章,在他的「追捕我儿子的凶手(Hunting Down My Son's Killer) 」这篇贴文中,他指出,他的儿子充满了活力,但他的疾病是危及生命的。这篇贴文描述了这个家庭的诊断过程,并标注了有助于这个家庭寻找有关症状之信息的关键字 。
  
  Williams表示,在很短的时间,他找到了40例患者与他们的家庭。他们开始聚集在一起,分享信息,并接触研究人员。现在,有两家药厂正在研究未来可能可用的治疗方式。
  
  Williams还提到,mPower app这个为巴金森氏症患者设计的应用程序, 使用问卷、患者电话的感应器的资料、以及选配之穿戴式设备的数据,持续不断地追踪状况,因此,患者可以查看和共享趋势。巴金森氏症患者被鼓励参与研究,而没有疾病的人应作为对照组。
  
  几个月后,纳入了15,000人,几乎80%的人表示,他们希望广泛地共享他们的数据,而有93%的人表示,他们从未参加过研究。
  
  这些例子都强调了,从「将病患参与视为一种礼貌」转变成「病患参与是信息和创新的重要来源」的重要性。
  
  她表示,如果我们找不到方法来进行这令人振奋的喜悦,我们将无法在我们想要的大数据获得进展。
  
  史丹佛大学医学院院长Lloyd Minor医师表示,用于研究的病患热情的另一个例子是MyHeart Counts app这个应用程序,患者只要在他们的智能手机登入,就可以参与史丹佛大学研究者进行的全球心血管研究。目前,超过60,000人参与这个研究。
  
  而且,如果你是透过23andMe进行过基因检测的120万人之一, 你可以选择让你的遗传资料和你的MyHeart Counts资料连结,Minor医师解释,所以,你可以根据你的基因获得有关个人心血管疾病风险因素之前所未见的资料,你也可以了解你的行为模式如运动会如何影响这些因素。
  
  他表示,从未有过这样的机会,汇集如此多的数据且使用预测性和前瞻性的方式应用它们,继而真正了解健康的决定因素和疾病的决定因素。
  
  资料来源:http://www.24drs.com/
  
  Native link:Harnessing Patient Innovation Key in Making Big Data Useful

Harnessing Patient Innovation Key in Making Big Data Useful

By Marcia Frellick
Medscape Medical News

The research community needs patient engagement, not because emerging regulations require it, but because "patients are showing us the way forward," said Claudia Williams, senior adviser for Health Innovation and Technology at the White House Office of Science and Technology Policy.

Williams, who helps lead President Obama's Precision Medicine Initiative, gave a few examples as she delivered the morning keynote at the Big Data in Biomedicine 2016 Conference in Stanford, California.

One was that of Erin Moore from Cincinnati, whose son, Drew, was born with cystic fibrosis in 2010 and whose advocacy built a network through which families are helping to shape research and care.

Moore told Medscape Medical News that soon after her son was born, she became involved in fundraising with the Cystic Fibrosis Foundation, and eventually was asked to be the state advocacy chair in Ohio.

When she began meeting with policymakers on Capitol Hill, "I realized the barriers in the system from a different vantage point. I needed the system to work better for my kid. Cystic fibrosis is a progressive and fatal disease, and I didn't have time for politicians on Capitol Hill to argue about what they wanted to do," Moore explained.

She was instrumental in getting cystic fibrosis included in the Collaborative Chronic Care Network (C3N) at the Cincinnati Children's Hospital, and in creating a partnership between C3N and the Cystic Fibrosis Foundation. That gave cystic fibrosis a care network center in Cincinnati, but the innovation from that center will be shared, so the community nationwide will benefit.

C3N brings together researchers, families, and clinicians to establish what an ideal care plan for cystic fibrosis looks like, what outcomes are most important, and how to measure whether change equals improvement.

"The measures aren't all for patients and families. One of our priorities is a joyful workforce," said Moore. "It's important to the community that our healthcare providers find joy in what they're doing and aren't overburdened by a system that doesn't work."

Father Uses Internet to Find Patients With Rare Disease

Williams also referenced Matt Might, assistant professor at the University of Utah School of Computing, who's son, Bertrand, has NGLY1 deficiency, a very rare genetic disorder.

Williams said clinicians told Might and his wife, Cristina Casanova, that they didn't know of any other people who had the disorder, so the couple had no one to discuss management, treatment, or hope with.

That's when Might wrote a blog post designed to go viral. In his Hunting Down My Son's Killer post, he notes that his son is very much alive, but that his disease is life-threatening. The post described the family's journey to a diagnosis, and was packed with keywords that might capture the interest of other families looking for information on symptoms.

"Over a short time, he found 40 patients and their families," Williams said. They started coming together, sharing notes, and approaching researchers. "Now, two pharma companies are investing in therapies for the future."

Williams also pointed to the mPower app, designed for patients with Parkinson's disease. The app uses questionnaires, sensor data from the patient's phone, and optional wearable device data to continuously track the condition so patients can review and share trends. People with Parkinson's disease are urged to join the study, as are people without the disease, who will serve as the control group.

Over a period of several months, 15,000 people enrolled. Almost 80% said they would like to share their data broadly, and 93% reported that they had never before participated in a research study.

All these examples highlight the importance of a shift from thinking of patient involvement as a courtesy to thinking of it as a vital source of information and innovation.

"If we cannot find a way to engage this excitement and this iteration and this delight," she said, "we will not make the progress toward big data that we want."

MyHeart Counts

Another example of patient enthusiasm for research is the MyHeart Counts app, said Lloyd Minor, MD, dean of the Stanford University School of Medicine. Patients can participate in a global cardiovascular research study being conducted by Stanford researchers just by signing up with their smartphone, as previously reported by Medscape Medical News. Today, more than 60,000 people have joined the study.

And, if you're one of the more than 1.2 million people who have had genomic testing through 23andMe, you can elect to have your genomic data linked with your MyHeart Counts data, "so you get unprecedented information about your risk factors based upon your genetics for cardiovascular disease, and you can learn how your behavioral patterns, such as exercise, may impact those factors," Dr Minor explained.

"Never has there been such an opportunity to bring together so much data and to apply them in a predictive and proactive fashion to really understand the determinants of health and the determinants of disease," he said.

Ms Williams has disclosed no relevant financial relationships. Ms Moore is a paid member of C3N.

Big Data in Biomedicine 2016 Conference. Presented May 25, 2016.

    
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