For many of us who have smartphones, tracking things like our steps, meals, sleep, medication, weight and menstruation has become second nature. And for researchers who rely on data like this to study everything from chronic disease to healthful lifestyles, all of that information has been going to waste for years, locked away in the proprietary data clouds of telecommunication companies.
But on March 9, Apple Senior Vice President of Operations Jeff Williams made waves in the scientific community with the announcement of his company’s new open source iPhone software, ResearchKit. The software gives developers a platform for apps that collect health data and create programs that help users improve their health. But in addition to benefiting iPhone users who simply want to make sense of all the health data they’re tracking, the new software gives researchers a platform to access the millions of bits of health data on users’ iPhones.
You’ve heard of people donating their bodies to science once they’re dead. ResearchKit can be viewed as a way to donate part of your life to science, too.
Research institutions like Stanford Medicine, UCLA’s Jonsson Comprehensive Cancer Center, Icahn School of Medicine at Mount Sinai, Massachusetts General Hospital and University of Rochester signed up to create apps that feed discrete bits of your tracked health information into databases for specific research projects. One app, called the Parkinson mPower app, helps people with Parkinson’s Disease track their symptoms by asking users to play games and complete dexterity exercises. Another, called the GlucoSuccess app, draws information from the data a person tracks about their diet, exercise and medicine to see how all of these different factors influence blood sugar levels. While none of that data is shared without a user’s consent and people will have to opt-in to have their data contribute to scientific study, researchers hope that a large share of users will comply.
Following the news, many researchers who spoke to The Huffington Post could barely contain how thrilled they were about the new iPhone feature, calling it “revolutionary,” “groundbreaking” and a “new dawn” when it comes to scientific research.
But beyond providing new data sources for researchers, the program may be able to directly improve the personal health of its users. As the apps continue to evolve, the hope is that programmers will figure out a way to turn your own data into insights tailor-made for one’s life and health goals.
Of course, the research applications of the new software are not without some caveats. Apple iPhone users are nowhere near the majority of smartphone users around the world. That distinction goes to the Android phone, which is more affordable than the iPhone and dominates an estimated 80 percent of the global smartphone market. To make smartphone health data truly representative of the population, research institutes and developers will have to find a way to reach Android users as well.
“Apple brings in a particular demographic: the more educated and the more affluent,” said Dr. Ida Sim, of University of California, San Francisco. “[ResearchKit] is a good way to start doing research in those populations, but people who are of lower socioeconomic status and lower income tend to be on Android and other platforms, so we’ve got to be looking for approaches to complement the exciting work Apple is doing.”
Here are 7 ways the experts hope Apple’s new software will change medicine for the better.
1. Data is how scientific discoveries are made. More data means more discoveries that can help more people.
Most everything we know today comes from decades upon decades of data collection — through experiments or observational surveying — that build upon previous discoveries. And usually, the greater amount of data scientists can analyze for a certain study, the stronger those study’s findings are.
In 2012, an estimated 44.3 million people used an Apple iPhone, and last March, Apple sold its 500 millionth iPhone worldwide. If ResearchKit’s apps can entice even a tiny fraction of those users to enroll in a study, the strength of the data would dwarf anything that even the most robust scientific population studies have provided.
“In most medical studies, 10,000 is a large number, but if we can really hit our mark and have a million people download it, you can do much larger population studies than anything that has been done in the past,” said Dr. Alan Yeung, medical director at Stanford Cardiovascular Health and an architect of Stanford’s MyHeart Counts app, which is one of five apps that are part of the ResearchKit launch. “So even though we might be slightly restricted in the beginning, we have plans to reach everybody in the world if possible.”
2. iPhone users will be way more diverse than the kinds of people who typically participate in clinical trials and studies.
Clinical trials and population studies form the basis of our health knowledge, but the participants who enroll in those trials tend to be white, affluent and male. Though no one knows exactly why this happens, there are some limitations at play that could contribute to the lack of diversity: research subjects need flexible work and family schedules, the ability to navigate complex bureaucracy and easy transportation — luxuries unavailable to the working class, for example. What’s more, researchers are limited in the amount of money they can spend to find participants, and most stick close to their university or hospital for willing subjects.
While one barrier to entry will be owning an iPhone, the open source nature of the platform means other developers will be empowered to riff off other people’s apps and figure out ways to connect people on other kinds of smartphones. Indeed, that’s the hope, said Yeung.
“Other researchers can look at our app to see what is in there and quickly make copies of the code of a particular part, and then improve on it and put it on another platform,” said Yeung. “Other people might beat us to the Android app, and this will quickly self-replicate. That’s really our goal.”
What’s more, some communities of color are wary of medical trials for historical reasons, according to Sim, who is co-director of Biomedical Informatics at UCSF. Sim wasn’t involved with the ResearchKit launch, and UCSF doesn’t currently have a published app on the platform, but she praised ResearchKit for making study recruitment and enrollment “easy” and “friendly.” She has high hopes for the software and thinks it could change the way people view study enrollment.
“With the Apple design, enrollment seems to be easier and informed consent seems to be more friendly, which lowers the barrier to more people being wiling to sign up for research,” Sim said. “It changes the way it feels to sign up for a research study, and for that I hope we would bring in populations that haven’t enrolled in trials before.”
3. The health information will become a lot more accurate.
“Most studies about exercise and heart health are reported by the subject, using their own recall, which means most people will say, ‘I exercise every day for 20 minutes,’ but in reality they don’t,” explained Yeung. This data collection methodology — that is, asking people to remember the past — is prone to all kinds of errors and wishful thinking. Specifically, people tend to overestimate the amount of exercise they get on a regular basis, and underestimate the amount of food they eat.
“We really don’t even know how much exercise you need to alter your cardiovascular outcome and health,” he said. But because of the accelerometer in the iPhone, Apple Watch, or other tracking device that can hook up to these apps, that could soon change.
“Now we can record when [participants] were sitting around, walking, or being moderately active,” said Yeung. “This amount of data has never been available before, and if we multiply it by a million, let’s say, we’re talking about data in medical research that’s never been encountered before.”
4. People can contribute to the field of research that affects them most.
The five apps that launched with ResearchKit target people with asthma, Parkinson’s disease, heart disease, diabetes and cancer, which means that iPhone users may be motivated to enroll and gain insight on the chronic disease that affect their lives. But beyond apps developed by academic institutions, this means patient organizations can get in on the research as well.
“I’ve worked with many patient groups that have burning questions that they want to answer,” said Sim. “And now there’s a technology where they can hire a software person so that they can ask these questions of themselves, so that we can all study and learn from each other.”
5. This will democratize scientific research.
Experts see at least two ways that ResearchKit will flatten those Ivory Towers of research. For one, the platform’s open source development will mean that research institutes will be able to more easily learn from one another and collaborate, instead of replicating and repeating each other’s steps out of a sense of competition.
ResearchKit could also have the effect of drawing the general public into a collaborative and open research community.
“There’s a new movement in academic research called participatory research, where patients are part of the groups that should be asking: ‘What questions are interesting? What should we test?’” said Sim. “The public could start seeing research as something that isn’t imposed on [them], but as an activity that we all do together so that we can learn together.”
6. The pipeline of research — from data collection to publicly published results to advice for individuals — will shorten substantially.
In traditional clinical trials and population studies, participants are paid for their efforts. So why give the data away for free? A satisfactory answer lies in how responsive programmers can make apps, according to University of Michigan Prof. Victor Strecher.
Strecher founded the Center for Health Communications Research, and his research centers around the quest to find purpose and meaning in life through health interventions. Neither Strecher nor his university were involved with the launch of ResearchKit. According to him, scientists and developers will only see the participants they need for research if the apps are sensitive enough to return a user’s data to them as information, advice and wisdom when they need it most.
“The bottom line in all of this, to me, is whether the data can be turned into knowledge, and even more importantly, whether that knowledge can actually be turned into wisdom,” Strecher told The Huffington Post. “And that’s the challenge for developers. All the numbers are great, but without turning the numbers into something that really helps somebody… people [won't] feel that they’re getting something more than they’re giving.”
Yeung already has plans for that feature in the Stanford app. In a few weeks time, after establishing baseline data with users, the app will begin to implement coaching on how to be more active, he explained.
“That’s basically the holy grail of medicine — how to change behavior,” Yeung said. “It’s using mobile technology, coupled with social media and social forces to try to change behavior and therefore health.”
7. Security concerns may shore up data breaches for good.
We already know there’s a generational divide when it comes to sharing information about yourself on the Internet. Young adults in the U.S. feel very comfortable getting personal on Facebook and Twitter. And while data points like the number of steps a person takes in a day may not be sensitive, other health information — particularly medical and genetic histories — may be better kept under lock and key.
“As we get better and better at combining different sources of data — for example, our genome, combining that with our medical information, combining that with various accelerometers and other biometrics on our bodies — starting to put all that together, people will become more concerned about security,” said Strecher. “I think we need to move from what we’ve considered adequate security for health care into, more or less, military grade security.”
The apps will have to develop to the point where it starts bringing in data from our medical charts, or information that’s usually created by your healthcare team and stored in a hospital or clinic’s electronic health records. By combining a user’s health data with data like a record of your medical history, researchers could create an even more powerful predictive tool for individual patients and have even more nuance in their studies.
“This is really a new dawn of a different way of doing medical research, whether it’s heart disease, parkinson’s, diabetes and asthma,” added Yeung. “I think it’s really quite amazing.”
Read more here:: Huffintonpost