Researchers at Imperial College London have designed a new app to help sickle cell anaemia patients keep track of their condition.

Sickle cell anaemia (SCA) is an inherited blood disorder, in which the oxygen-carrying blood cells develop abnormally, so patients have trouble pumping enough oxygen around their body.  People with the disease experience lethargy and breathlessness, particularly after exercise, and sometimes have episodes of severe pain caused by abnormal cells blocking blood vessels.

13,500 people

According to NHS figures up to 13,500 people in the UK have sickle cell anaemia. It’s most common in people of black African or Caribbean descent, but can also affect people of Middle Eastern, Asian and eastern Mediterranean background.

Medical records go mobile

health

SCA patients have to take different medication at many times a day, as well as remaining adequately hydrated, and avoiding or planning ahead of physical triggers, such as heat or cold, which may affect their condition. Some even take daily antibiotics to protect themselves from possible infections. Patients have blood transfusions and blood tests, which can sometimes be as regular as one every two weeks. All of this calls out for better disease management.

The new app, called SiKL, looks to allow patients to manage their medical records better, keeping track of and engaging actively in their own treatment using a smartphone. Currently, most patients record all their procedures, check-ups and appointments on paper records, which suffer from limitations such as the amount of information they can record, being lost by patients or worn out over time.

“Most people have smartphones and always carry them. They will never run out of space and there are lots of potential things you could do with that information in the future, for example, exchanging, sending it by email or printing it,” Dr Kit Huckvale, one of the creators of the app, says.

The disease is less common in developed countries like the UK, and so clinicians are often unaware of the condition. The app also provides information about new treatments, which patients can send to their doctors.

SiKL should also be useful in developing countries, where sickle cell anaemia is more prevalent. “The app is available globally right now, so anyone who has an interest could pick it up and use it,” Dr Huckvale adds, “but I think there probably would be work to do develop and further refine it for particular needs and particular settings.”

To test the app, the team worked with the Sickle Cell Society, patients from Imperial College Healthcare NHS Trust clinics and participants from the TalkLab Initiative, a collaborative project bringing together clinicians, parents and young patients to improve healthcare in North London. More than 300 people have downloaded the app so far. Patients have given positive feedback and ideas for new features, such as medication reminders.

Patient confidentiality

Dr Huckvale says the team put patient confidentiality at the top of their agenda. “At the moment, everything that you put on the app stays on that person’s device and we were very clear from the start that although there might be uses in having the data connected and synced to the cloud, it opened up some risks that we didn’t feel comfortable about.” A pin protects the patient’s data inside the app, and the data is wiped off completely if the incorrect pin is entered too many times.

For years, there has been a push to get patients involved in their treatments. “Medical records can fulfil lots of different purposes,” Dr Huckvale says. ”They were originally intended as something doctors and other healthcare professionals could use to manage their own thought processes, and also for legal reasons. I guess what apps introduce is that they can serve uses for patients as well.”

But Huckvale does not believe that apps can entirely replace traditional medical records. “The question of how do you bridge between patients and clinicians still needs to be explored in a bit more detail.”

Dr Huckvale worked alongside a team of researchers and clinicians, including Professor Azeem Majeed, Head of Primary Care and Public Health, Dr Josip Car, Director of the Global eHealth Unit, and Dr Mark Larsen, Research Associate in Primary Care and Public Health at Imperial.