Geeks come in to resuscitate healthcare

In March, Apple launched ResearchKit, a platform that could revolutionise medical research, enable a deeper understanding of human health and even accelerate advances in medicine. In stark contrast to such spectacular possibilities, the technology itself is relatively simple, easily accessible and certainly cost-effective. ResearchKit does not involve wearing a separate or specialised device, nor is it limited to the confines of a hospital or even to one’s home. The platform is simply accessed through applications on an iPhone, making it available to hundreds of millions of Apple users.

ResearchKit’s open-source framework enables scientists to create apps that meet the needs of their specific areas of research, while presenting a host of opportunities to monitor users’ health and help them manage diseases. So far, five iPhone apps have been created by world-leading medical research facilities using the ResearchKit framework. Funded by the Robert Wood Johnson Foundation, the five programs were already under development as web-based applications prior to Apple’s involvement. When the connection was made with Apple, the projects were turned into apps that can be used onto an iPhone, opening up a new realm of possibilities for medical research.

Wearable heart monitors, linked to electronic medical records, would be extremely helpful in picking up silent but important rhythm disturbances

Integrated technology
The beauty of Apple’s platform is that it taps into the tools and capabilities already built into the iPhone, so no further add-ons or costs are required to create or use the apps. ResearchKit uses the phone’s sensors, such as its gyroscopes, barometers and accelerometers, to take frequent measurements of an array of variables related to health. Every app varies in its features and methods, but, for each, sensors are used to collate data on the daily progress of individuals. These are combined with surveys and exercises that replicate the type of tests carried out by doctors. The results are then sent automatically to the relevant research facility. As the sensors and features integrated into the phones’ hardware are almost identical across the three models that can launch ResearchKit apps (the iPhone 5s, 6 and 6 Plus), the data collected can be normalised with relative ease.

The sensors used in conjunction with the apps reveal the sophisticated capabilities of smartphones, and the iPhone in particular, which herald a new period in medical research and health management. mPower, an app created by the University of Rochester and Sage Bionetworks, monitors individuals living with Parkinson’s disease, a degenerative condition that causes severe motion difficulties. “Perhaps the three most important sensing devices are the accelerometer (measuring forces in three dimensions acting on the phone), the microphone (measuring acoustic pressure) and the touchscreen (measuring finger movements)”, says Dr Max Little, Assistant Professor at Aston University and advisor to the mPower project. “These three sensors alone contain rich information about behaviour that is relevant to Parkinson’s signs and symptoms.”

Tasks carried out on the phone, which can be completed anywhere and at any time, offer researchers the chance to collect more information on a wider and more thorough scope than was previously possible. “One of the main aims of the app is to collect a lot of continuous-time, objective information about Parkinson’s signs and symptoms from a wide population of iPhone users”, says Dr Little. “One of the major limitations of current studies of the ‘natural history’ of the disease is that we don’t really have objective data about symptom progression in between visits to the clinic.”

The app also asks patients to complete the activities before and after taking medication, allowing scientists to accurately capture drug effectiveness. This simply was not possible before – and certainly not as practical. In this way, mPower is able to capture the progression of the disease in individuals with regularity and frequency over a long period of time, giving researchers a new level of insight, which can help them advance treatments.

So pragmatic
The convenience for participants is a fundamentel advantage of using a device they already have on their person at all times to retrieve information about their health. This entails great things for medical research in terms of the amount of data that can be collected from thousands and even millions of individuals on a regular basis – something that has never before been possible. Through the relevant app, iPhone users can gain a far better understanding of the variables that affect their wellbeing on a daily basis. Through the Asthma Health app and the phone’s existing GPS capabilities, asthma sufferers can be warned if they are about to enter an area with bad air quality that could cause discomfort, or even an attack.

Asthma Health monitors symptoms both during the day and at night and, consequently, how symptoms affect the physical activity of participants. The app can also record inhaler usage and triggers that affect participants, such as strong smells, intense exercise, dust and animals. Medical visits, planned or emergency, can also be recorded on the device as a way of keeping track, while reminders to take medication can help disease management. Tips on living with asthma and demonstration videos about inhaler use are also included in the app. Together, these features enable participants to better cope with the affliction and significantly enhance their standard of living. All the while, Asthma Health feeds information to Mount Sinai and Weill Cornell Medical College, helping researchers involved in the study better understand the condition and improve treatment methods.

There is strength in numbers and it is with this premise that ResearchKit can make a powerful contribution to medical research through the provision of more robust and frequent data, which can improve both wide-ranging and individual treatments. Not only does the framework allow researches to collect reams of data at an unprecedented rate, it also delivers the information in a far easier and more cost-effective manner; traditional paper questionnaires are time consuming for patients to fill out (a major dissuading factor), while data inputting is a costly and lengthy enterprise.

“I’ve been doing quality of life research for about 35 years and one of the challenges that we had was the ability to do any kind of daily diary monitoring”, says Professor Patricia Ganz, Professor of Health Policy and Management at the Fielding School of Public Health. “[It’s] very burdensome in terms of records and so forth; people would forget to do them, and they would be very challenging to analyse. But if you can just query someone once a day, or two or three times a day – when the patient comes in to to see you, just as you might look at their blood pressure monitoring or their glucose monitoring – you could look at how they were doing in terms of their symptoms. So I think it has great potential, if you’re only seeing a patient every two or three months, to be able review how they have done over that time, rather than having them to try to recall.”

Preventative opportunities
The MyHeart Counts app, which was developed by Stanford Medicine in collaboration with the University of Oxford, is designed to help users understand how their lifestyles and daily physical activity levels affect their cardiovascular health. “We have been very interested in the whole area of sensors and mobile health, using technology to capture information that might not otherwise be captured using traditional routes, and using that both to inform discovery – so, associations between behaviour or genetics and disease – and to provide new ways of improving health”, says Professor Martin Landray, a cardiologist and researcher at the University of Oxford, who is involved in the project.

Through the use of wearable technology, cardiologists can directly and accurately measure activity and how it improves health over longer periods. Furthermore, through long-term monitoring, new insight can be given into intermittent symptomatic episodes.

Wearable devices worn continuously thus infer possibilities for cardiology that are particularly exciting, especially in terms of preventative measures.

“Patients come to me each week describing their palpitations”, says Professor Landray. “One of the challenges for me is trying to work out what really is happening: what is the heart rhythm and what does the ECG tracing look like at the time that they’re having palpations? Wearable devices would really help me with that problem.

“A different area is around changes to heart rhythm that are asymptomatic or silent – quite a common problem in some patient groups. From time to time, their heart beats quite abnormally; the heart rhythm changes into something called atrial fibrillation, which is a risk factor for stroke. Because it’s often silent, it’s under-diagnosed. If only we knew the problem was there, treatments to reduce the risk of stroke could be started. Wearable heart monitors, linked to the electronic medical records, would be extremely helpful in picking up these silent but important rhythm disturbances.”

Tracking the journey
ResearchKit also enables a new level of understanding in recovery, which the Share the Journey app aims to capture. Built by Sage Bionetworks, together with the Dana Farber Cancer Institute and breast cancer expert Professor Ganz, Share the Journey follows the recovery of breast cancer patients through surveys and data collected via the iPhone’s sensors. The program monitors five common symptoms that occur following treatment for breast cancer: alternations in mood and cognition, sleeplessness, fatigue, and a reduction in exercise. “We know in behavioural intervention research that recording and tracking these things may be very useful”, says Professor Ganz.

Apple’s in-built HealthKit, which measures aspects of fitness, is incorporated into the Share the Journey app, so individuals can see how these activities interact with the self-reporting of their sleep patterns and mood. Not only does this provide a new horde of data while helping to identify what improves or falters symptoms during the recovery stage, it provides an invaluable tool to the individuals themselves: the app enables participants to track their own progress and see how their daily routine affects their symptoms, enabling women to significantly improve their quality of life.

“We are using the Share the Journey app to have women journal and talk about their experiences”, says Professor Ganz. “We have some programs available where we’re able to look at errors in the typing to see if that may have any relationship to cognitive function, which is a concern for some women after breast cancer treatment.”

Another app that gives users the ability to better understand their condition and the effects of their daily routine is GlucoSuccess, a medical research study using ResearchKit that was created by Massachusetts General Hospital. The project focuses on people living with Type 2 diabetes or a pre-diabetes diagnosis. GlucoSuccess again helps the participant understand how their behaviour impacts their wellbeing through tracking their diet and daily movement. The app enables users to compare their glucose levels before and after certain foods, helping them to make significant changes based on the results they see on their phone. Notifications can be sent to the phone about glucose levels, helping individuals to better manage life with the disease.

Health problems
As with any Apple innovation, the underlying assumption that frustrates the non-Apple-using world is the fact that not everyone has an iPhone. In fact, 81.5 percent of smartphone users in the world have a phone running the Android operating system. This, of course, means a large majority of the world’s population will be excluded from using ResearchKit apps and participating in this new revolution in medical research. Should Android bring out its own medical research platform, the differences between the operating systems would make it difficult and costly to normalise the information. In other words, there would be two distinct groups for those offering their medical data: Apple users and Android users. Hardly a fair study.

Furthermore, the demographics of Apple users could also obstruct a clear and inclusive picture of individuals suffering from ailments and disease. For example, in the US, iPhones are generally less common among poorer communities, yet there is a higher incidence of cardiac and cardiovascular diseases in those social groups. Then there is the age parameter: iPhone users tend to be much younger, yet it is older people who are affected by age-related conditions, such as Parkinson’s disease. The information collated through the iPhone apps could be extremely limited, to say the least.

Finally, there are some who argue that a lot of the information delivered through the ResearchKit platform will not actually be of use; perhaps the participants are unqualified patients, making the skewing of results a distinct possibility. With no blocks on who can sign up to take part in the app-based studies, it is easy for people to ‘play games’ with their new applications. Of course, the likelihood of people carrying out such fraudulent activities seems pretty low over a sustained period – particularly as there are no financial rewards or other gains in doing so – but the possibility of a fraction of people doing so cannot be refuted. For this reason, cyphering the noise from the actual data could be time consuming and may act as a distraction for medical practitioners.

A revolution
“We are in a revolution right now”, says Professor Ganz. “If you look at how we are going to work with patients or healthy people, it’s going to be much more interactive. There’s a whole movement towards patient-centred care and patient engagement.”

Through technology, this greater degree of interactivity between patients and medical practitioners could lead to a new era of understanding for all parties. Individuals can take greater control of their own well-being, doctors can provide better patient care and treatment, and researchers can gain a deeper insight, which could lead to unprecedented results and breakthroughs.

Although there are inevitable imperfections and teething problems, there is so much to be gained from a medical tool that is integrated into a mobile phone. “It is early days and the benefit of this kind of large-scale, ‘crowdsourced’ objective data collection is something that we are investigating”, says Dr Little. “Potentially, though, the kind of sensor data we can collect using smartphones could increase our scientific understanding of [Parkinson’s] disease substantially.”

It is important to note, however, that this revolution did not begin with Apple. Wearable medical tech is already in existence and has done great things for both patients and researchers. There are a number of tools that have been available for some time, including heart monitors, Health Care Originals’ Intelligent Asthma Management device, and the HealthPatch MD product, which helps healthcare professionals monitor vital information about their patients.

Ultimately, however, there is a significant difference in the amount of data the iPhone can obtain in comparison to other such devices. Nothing extra has to be bought or worn with ResearchKit, and the popularity of iPhones around the world needs no explanation. The Apple name raises the awareness of wearable health tech to a new level, putting the media spotlight on the five apps already in existence and any others that follow. This itself encourages more participation in these studies, which have a global scope and untold potential. It’s the Apple connection that ushers in the true possibilities of wearable health technology, and a new age of medical research that has unlimited possibilities.