Mobile phones become personal health experts

"Unfortunately there is no readiness for using these data in healthcare, because they haven't asked for them. Even if they did, they wouldn't know how to handle them," says Staffan Lindblad, professor at the Department of Learning, Informatics, Management and Ethics at Karolinska Institutet.

He is in charge of the sub-project Informatics in the Stockholm County Council and Karolinska Institutet's project 4D (four diagnoses) that is about improving health and increasing participation in healthcare for the four diagnostic groups of arthritis, breast cancer, type 2-diabetes and congestive heart failure. Prior to this work he has investigated how healthcare services handle this type of patient-generated health data.

"The principle difference between the present and past is that patients can now measure what they want to, not only what healthcare asks for. There are now limitless possibilities to gather different types of data in a simple way: what you eat, what you weigh, how you move and so on. The patient can also go in and answer the question "How are you today" by clicking on different smileys, giving a kind of life-quality measurement. Mobile phones can also collect a lot of data automatically, so that you don't need to specify your weight or how long you exercised for. This automation of collection, in particular, generates an incredible amount of data, he says.

Healthcare currently has no readiness to receive or use this data in its work toward better, more individualised care.

"One of the problems with healthcare is that it is so far behind the times technically. There is an entire epoch between healthcare's use of modern technology and the rest of society. Many younger doctors are very frustrated that they do not have the same IT support at work as they have at home," he says.

"Patients will not accept this for much longer; they will drive healthcare development in front of them. County councils will find it very difficult to carry out its mission if they do not invest in this area," he says.

Give power to the patients

Even if county councils modernise their IT equipment, that will only provide the basic prerequisite for utilising the new flow of information. The conclusion that Staffan Lindblad and his group have reached after studying the problem is that healthcare needs help to manage all the new information - a sort of information broker between the various mobile services and healthcare.

"Health care can never follow this incredibly rapid development. This is something that private companies create because users want it, but if the information is going to be transferred to the healthcare services as evidence-based data for decisions, this data stream must be structured and presented in a way that healthcare can manage," says Staffan Lindblad.

"What we see ahead of us is a kind of organisation that sells its services to healthcare in some way. If it will be owned by the county councils or not, we don't know. But as things are today, there is a gap between healthcare and all the data that patients can collect. We have to bridge that gap somehow," he says.

The fact is that there are large profits to be made in involving patients more in their own health care and getting them to participate in various e-health solutions. Healthcare knows this, and they are trying as best they can." Staffan Lindblad tells us about some rheumatologists who noticed a few years ago that it could take up to six months before patients with suspected rheumatoid arthritis had contact with a specialist. With today's effective antiretroviral therapy, a lot of valuable time will already have been lost by then. Then someone decided to give patients more power from the start instead. The website "Painful Joints" (ontilederna.nu) was created, where people with arthralgia can visit and do a test that takes less than five minutes. If it indicates that the pain should be checked by a doctor, the patient can write a referral to a specialist immediately. The whole idea is to take the brakes off the process and give power to the patients.

Help for self-help

One patient who has already taken over the power is Sara Riggare. She has had Parkinson's disease for a long time, and she is also a postgraduate at Karolinska Institutet's Department of Learning, Informatics, Management and Ethics. With her research, she is developing an app that will help other Parkinson's patients to measure rigidity and speed in their joints by alternately drumming with their index finger and middle finger on the touch-sensitive screen of a phone. The dexterous skills of Parkinson's patients vary during the day, depending on the levels of medicine in the body.

"The idea is that patients will have a tool to make personal observations in order to continuously improve their medication," she says.

She has tested the app on ten Parkinson's patients so far.

"They thought it was interesting to obtain a measurement of their feeling of how things were in their bodies. When things felt a little sluggish, they could also see from the app that their movements were slower. It was useful to be able to show that to their doctors," says Sara Riggare.

Their comments have contributed to the development of the app, and an enhanced version will soon be ready for testing by new patients.

She became interested in measuring her disease a number of years ago when she was about to start a rather complicated programme of medication, with five or six medicinal products taken in various combinations six times a day. Her fascination with the measurement, she thinks, is a combination of her keenness to obtain a good medication programme and her earlier career as an engineer.

"By using a mobile app to administer the Parkinson's medicines, I learned in the end what it felt like in my body when it was time to take the next dose. I didn't need to use the app any longer," she says.

Taking charge of your own illness

It was at this time she came in contact with the Quantified Self movement. It was started in Silicon Valley, California, in 2007 by around 30 people who all shared the fact that they measured themselves all the time, and/or manufactured equipment to measure themselves. They were elite athletes rather than patients, and they measured their pulse and so on daily.

Sara Riggare was invited as a speaker at their first European conference in Amsterdam in 2011.

"I did that without knowing that it was called Quantified Self. You measuring things about yourself, for yourself," she says.

"In fact, it is hardly strange or new. People have always studied themselves through the ages to understand how they work. What is new is that advanced technical equipment is now available to do it with - and it has a cool American name."

Sara Riggare has now learned to manage all of her medicines without any problems.

"Today I take medicines at the same time each day plus/minus 15 minutes. I am almost religious in following the schedule."

She believes it is very natural for a patient with a chronic disease to take an interest in how the disease works.

"I meet my neurologist twice a year for 30 minutes each time - the other 8,765 hours of the year I take care of myself," she says.

A patient who is observant of her symptoms, her disease and her medication can learn a lot about how her own disease works. This also makes daily management of the disease better, and thus healthcare in general.

"I see it as my responsibility to be as independent from healthcare as I can. I do not want to burden the healthcare system more than necessary," she says.

A patient who takes responsibility for her own disease in this way should be a huge asset for healthcare. Though it is by no means certain that the doctor sees it that way, she notes. What happens when the patient knows more than her doctor?

Even though she has not experienced it, there is plenty of evidence from other active patients that certain doctors react very defensively. Many of them believe that the internet, e-health and mobile apps will permanently change the balance of power between doctor and patient. But whatever the doctors think about the situation, says Sara Riggare (and many other measuring patients), it is the only way forward.

"I am not saying I have all the answers, and I know that I am not even aware of all the issues. I am convinced, though, that offering patients an opportunity to take greater responsibility for their illness is the right way to go. So healthcare must dare to let go a bit, otherwise it's not possible," she says.

Pep-talks for patients with rheumatoid arthritis

Mobile apps can be used in other ways than just measuring body values and diseases. Åsa Revenäs is a physiotherapist and postgraduate student at Karolinska Institutet's Department of Neurobiology, Care Sciences and Society. She is developing a mobile-based internet service to help people with rheumatoid arthritis or RA, as it is called in medical jargon, to become more physically active together.

The service is called the "staircase" with the letters RA written in capital letters to emphasise the disease, but the name also associates with the world of apps and the physical activity that a staircase can give.

"It shows that the patients who reported their values using the app had a lower level of symptoms, especially urine-related symptoms and fatigue, compared with those who had not reported their values. Those who had used the app also had higher life-quality values than those who had not used it, she says.

The study shows that patients feel involved, safe and secure with the healthcare system, despite being cared for at home for the most part. The nurses appreciated the continuous information from the system on how patients felt during the treatment, but were slightly concerned about having an increased clinical workload with the monitoring of symptoms and management of alarms.

"But our hypothesis is that the system should identify serious symptoms earlier and reduce the number of visits to healthcare professionals and their clinical workload," says Ann Langius-Eklöf.

It is an issue that she will return to in future studies.

Minimising security risks

It is important for both healthcare and patients that the new mobile tools are scientifically evaluated to ensure that they really are providing the benefits that everyone is hoping for, especially if they become more integrated in the healthcare system such as the case of Ann Langius-Eklöfs cancer-app. But such evaluations will take a long time, and it is clearly impossible to evaluate all of the 100,000 or so apps in medicine, healthcare and well-being - not even the quarter of them that are actually in use. For this reason, it is important that users think ahead before downloading apps and uploading information that could be sensitive for their integrity.

A very recent Australian study has examined some of the most popular English-language mobile apps targeted at the general public for diagnosing a number of symptoms that are entered. It looks at apps that have already been downloaded by millions of people worldwide, such as Itriage Health, or Pocket Doctor Lite. Despite these apps being marketed as an alternative to a doctor, they are generally vague about the medical grounds they are based on. It is often difficult to find out who or what is behind the apps and the commercial reason for their creation. Only a few apps have any kind of data security information; some indicate that they protect users' information while others openly state that they share patient information with third parties to access marketers and suppliers that "provide more relevant content and advertising".

A new German review of data security in English-language apps in medicine, healthcare and well-being has grouped them by content and graded how much damage would be done if the data were leaked, manipulated or lost in apps in the different groups. It becomes clear that there are few apps which do not involve any risk at all, while just over one in ten apps contains very sensitive journal data.

The researchers state that there is no universal method of securing data; every manufacturer, developer, vendor and not least users of apps must be aware of their potential security risks and try to minimise them.
They also point out that people should remember just downloading an app for impotence, incontinence or similar disorder reveals private and sensitive information.

Swedish healthcare has been aware of security issues for a long time and all data passing through its systems must be handled in a specific manner. There is a Services Platform to create various services with a high level of security, but 100% security can never be guaranteed when there are people involved, according to Staffan Lindblad.

"If you can hack into NASA's or CIA's computers, you can hack anywhere. What you can do is to make a system as safe as possible," he says.

Another potential security risk with medical apps that should also be considered is the risk that the app itself is badly designed. It is not possible to know how common this is because there are no statistics, but it happens. For example, in 2011 the pharmaceutical company Pfizer was forced to send a letter to all doctors and ask them to delete an app that the company had created to help measure disease activity levels of patients with rheumatoid arthritis. Unfortunately, the app had a faulty design and gave incorrect values, but not in a systematic way.

Quality-controlled apps

The above example shows that medical apps need to be carefully checked before they are released. There is certainly a regulatory framework which stipulates that mobile apps claiming to make diagnoses, influence treatment or have a similar impact in healthcare are classified as medical devices, and must therefore be CE marked. However, the requirement does not demand much more than the manufacturer giving the app a CE label in most cases.