建構病患創新的關鍵在於運用大數據


  【24drs.com】白宮科技政策辦公室健康創新與科技資深顧問Claudia Williams表示,研究界需要病人參與,不是因為新規則要求,而是因為患者向我們展示了前進的方向。
  
  Williams負責歐巴馬總統的精準醫學計畫,她在加州史丹佛生物醫學大數據2016年研討會中提出了幾個例子。
  
  第一位是來自辛辛那提的Erin Moore,她的兒子Drew在2010年出生時患有囊狀纖維化,Moore提倡透過這些家庭建構一個網絡而幫助研究與照護。Moore在兒子出生後不久,開始參與囊狀纖維化基金會的籌款,最後被推舉擔任俄亥俄州宣傳主席。
  
  當她開始與國會山莊內的政策決定者進行會議時,Moore解釋,我從不同的制高點意識到在系統中的障礙,為了我的孩子,我需要系統能夠更好地運作。囊狀纖維化是一個漸進性和致命的疾病,而且我也沒有時間在國會山莊和政客們爭論他們要做什麼。
  
  她致力於在囊狀纖維化方面幫助辛辛那提兒童醫院的「慢性病協同照護網絡(Collaborative Chronic Care Network (簡稱為C3N))」,並且為C3N和囊狀纖維化基因會建立合作關係,促成了在辛辛那提的囊狀纖維化照護網絡,而且這個中心的創新將會被共享,全國各地都將受益。
  
  C3N整合了研究者、家庭、醫師,為囊狀纖維化建立一個理想的照護計畫,更重要的是獲得的結果、以及如何衡量變化是否等同於改善。
  
  Moore表示,這些措施並不僅是為了所有病人和家屬,我們的一個優先考慮是:歡樂的勞動力。對這個社會來說,重要的是,我們的健康照護提供者在他們的所作所為中感到愉悅,不會因無法運作的系統而不堪負荷。
  
  Williams也引述了猶他大學計算機學院助理教授Matt Might,他的兒子Bertrand患有相當罕見的NGLY1缺乏症這個遺傳疾病。
  
  Williams表示,醫師告訴Might和他的太太Cristina Casanova,他們不知道其他還有誰患有這個疾病,所以這對夫婦無人可以討論相關處置、治療,毫無希望。
  
  那時,Might在部落格寫了一篇爆紅的文章,在他的「追捕我兒子的兇手(Hunting Down My Son's Killer) 」這篇貼文中,他指出,他的兒子充滿了活力,但他的疾病是危及生命的。這篇貼文描述了這個家庭的診斷過程,並標註了有助於這個家庭尋找有關症狀之資訊的關鍵字 。
  
  Williams表示,在很短的時間,他找到了40例患者與他們的家庭。他們開始聚集在一起,分享資訊,並接觸研究人員。現在,有兩家藥廠正在研究未來可能可用的治療方式。
  
  Williams還提到,mPower app這個為巴金森氏症患者設計的應用程式, 使用問卷、患者電話的感應器的資料、以及選配之穿戴式設備的數據,持續不斷地追蹤狀況,因此,患者可以查看和共享趨勢。巴金森氏症患者被鼓勵參與研究,而沒有疾病的人應作為對照組。
  
  幾個月後,納入了15,000人,幾乎80%的人表示,他們希望廣泛地共享他們的數據,而有93%的人表示,他們從未參加過研究。
  
  這些例子都強調了,從「將病患參與視為一種禮貌」轉變成「病患參與是資訊和創新的重要來源」的重要性。
  
  她表示,如果我們找不到方法來進行這令人振奮的喜悅,我們將無法在我們想要的大數據獲得進展。
  
  史丹佛大學醫學院院長Lloyd Minor醫師表示,用於研究的病患熱情的另一個例子是MyHeart Counts app這個應用程式,患者只要在他們的智慧手機登入,就可以參與史丹佛大學研究者進行的全球心血管研究。目前,超過60,000人參與這個研究。
  
  而且,如果你是透過23andMe進行過基因檢測的120萬人之一, 你可以選擇讓你的遺傳資料和你的MyHeart Counts資料連結,Minor醫師解釋,所以,你可以根據你的基因獲得有關個人心血管疾病風險因素之前所未見的資料,你也可以瞭解你的行為模式如運動會如何影響這些因素。
  
  他表示,從未有過這樣的機會,彙集如此多的數據且使用預測性和前瞻性的方式應用它們,繼而真正瞭解健康的決定因素和疾病的決定因素。
  
  資料來源: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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