Red Bluff Daily News

July 28, 2015

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ByBrandonBailey TheAssociatedPress SAN FRANCISCO Jody Ke- arns doesn't like to spend time obsessing about her Parkinson's disease. The 56-year-old dietitian from Syracuse, New York, had to give up bicycling be- cause the disorder affected her balance. But she still works, drives and tries to live a normal life. Yet since she enrolled in a clinical study that uses her iPhone to gather informa- tion about her condition, Kearns has been diligently taking a series of tests three times a day. She taps the phone's screen in a certain pattern, records a spoken phrase and walks a short distance while the phone's motion sensors measure her gait. "The thing with Parkin- son's disease is there's not much you can do about it," she said of the nervous-sys- tem disorder, which can be managed but has no cure. "So when I heard about this, I thought, 'I can do this.'" Smartphone apps are the latest tools to emerge from the intersection of health care and Silicon Valley, where tech companies are also working on new ways of bringing patients and doctors together online, applying massive comput- ing power to analyze DNA and even developing ingest- ible "smart" pills for detect- ing cancer. More than 75,000 peo- ple have enrolled in health studies that use special- ized iPhone apps, built with software Apple Inc. developed to help turn the popular smartphone into a research tool. Once en- rolled, iPhone owners use the apps to submit data on a daily basis, by answer- ing a few survey questions or using the iPhone's built- in sensors to measure their symptoms. Scientists overseeing the studies say the apps could transform medical research by helping them collect in- formation more frequently and from more people, across larger and more di- verse regions, than they're able to reach with tradi- tional health studies. A smartphone "is a great platform for research," said Dr. Michael McConnell, a Stanford University cardi- ologist, who's using an app to study heart disease. "It's one thing that people have with them every day." While the studies are in early stages, researchers also say a smartphone's mi- crophone, motion sensors and touchscreen can take precise readings that, in some cases, may be more re- liable than a doctor's obser- vations. These can be corre- lated with other health or fitness data and even envi- ronmental conditions, such as smog levels, based on the phone's GPS locater. Others have had similar ideas. Google Inc. says it's developing a health-track- ing wristband specifically designed for medical stud- ies. Researchers also have tried limited studies that gather data from apps on Android phones. But if smartphones hold great promise for medi- cal research, experts say there are issues to consider when turning vast numbers of people into walking test subjects. The most important is safeguarding privacy and the data that's collected, according to ethics experts. In addition, researchers say apps must be designed to ask questions that produce useful information, without overloading participants or making them lose interest after a few weeks. Study or- ganizers also acknowledge that iPhone owners tend to be more affluent and not necessarily an accurate mirror of the world's pop- ulation. Apple had previously cre- ated software called Health- Kit for apps that track iPhone owners' health sta- tistics and exercise habits. Senior Vice President Jeff Williams said the company wants to help scientists by creating additional soft- ware for more specialized apps, using the iPhone's ca- pabilities and vast user base — estimated at 70 million or more in North America alone. "This is advancing re- search and helping to de- mocratize medicine," Wil- liams said in an interview. Apple launched its Re- searchKit program in March with five apps to investigate Parkinson's, asthma, heart disease, diabetes and breast can- cer. A sixth app was re- leased last month to col- lect information for a long-term health study of gays and lesbians by the University of Califor- nia, San Francisco. Wil- liams said more are be- ing developed. For scientists, a smart- phone app is a relatively inexpensive way to reach thousands of people liv- ing in different settings and geographic areas. Tra- ditional studies may only draw a few hundred partic- ipants, said Dr. Ray Dorsey, a University of Rochester neurologist who's leading the Parkinson's app study called mPower. "Participating in clinical studies is often a burden," he explained. "You have to live near where the study's being conducted. You have to be able to take time off work and go in for frequent assessments." Smartphones also offer the ability to collect precise readings, Dorsey added. One test in the Parkinson's study measures the speed at which participants tap their fingers in a particular sequence on the iPhone's touchscreen. Dorsey said that's more objective than a process still used in clin- ics, where doctors watch pa- tients tap their fingers and assign them a numerical score. Some apps rely on par- ticipants to provide data. Elizabeth Ortiz, a 48-year- old New York nurse with asthma, measures her lung power each day by breath- ing into an inexpensive plastic device. She types the results into the Asthma Health app, which also asks if she's had difficulty breathing or sleeping, or taken medication that day. "I'm a Latina woman and there's a high rate of asthma in my community," said Ortiz, who said she already used her iPhone "constantly" for things like banking and email. "I fig- ured that participating would help my family and friends, and anyone else who suffers from asthma." None of the apps test ex- perimental drugs or sur- geries. Instead, they're de- signed to explore such questions as how diseases develop or how sufferers respond to stress, exercise or standard treatment reg- imens. Stanford's McCon- nell said he also wants to study the effect of giving participants feedback on their progress, or remind- ers about exercise and med- ication. In the future, researchers might be able to incorpo- rate data from participants' hospital records, said Mc- Connell. But first, he added, they must build a track re- cord of safeguarding data they collect. "We need to get to the stage where we've passed the privacy test and made sure that people feel comfortable with this." Toward that end, the en- rollment process for each app requires participants to read an explanation of how their information will be used, before giving for- mal consent. The studies all promise to meet federal health confidentiality rules and remove identifying in- formation from other data that's collected. Apple says it won't have access to any data or use it for commer- cial purposes. Some studies will always require in-person inter- action or supervision by a doctor, experts say. But by reaching more people and gathering more data, advo- cates say smartphone apps can help doctors answer more subtle questions about a disease. "Diseases like asthma are very complicated. They're not caused by a single gene or environmen- tal influence," said Eric Schadt, a genomics profes- sor who's using an iPhone app to study asthma at New York's Icahn School of Medicine at Mount Sinai. "The only hope you have of really going further in re- solving this disease is for researchers to get to more people." SOFTWARE Sm ar tp ho ne s be co me t oo ls f or m ed ic al r es ea rc h ASSOCIATEDPRESSPHOTOS Asthma sufferer Elizabeth Ortiz uses the Asthma Health smartphone app daily to track her condition. Ortiz measures her lung power each day by breathing into an inexpensive plastic device and then typing the results into the app, which also asks if she's had difficulty breathing or sleeping, or taken medication that day. Dr. Michael V. McConnell, a cardiologist who's using an app to study heart disease, walks up a stairwell at Stanford Medical School in Stanford. 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