Cluster headaches are excruciatingly painful. SAP employee Richard Posthuma is looking for a way to make life more bearable for himself and his fellow sufferers.
Nothing compares with this journey to hell and back — nothing. Sufferers describe the pain that strikes them on one side of their head as cripplingly aggressive, “like someone boring a screwdriver into your eye.” Over and over again. Sometimes for hours at a time.
“Cluster headache” disorder, also known as Bing-Horton’s neuralgia, is still something of a mystery to the medical profession. Its causes are not fully understood. The condition is incurable, and the best that sufferers can hope for is relief from the symptoms. On a scale of one (no pain) to 10 (worst imaginable pain), cluster headaches – so-called because the symptoms usually occur periodically and in groups of attacks, or “episodes” – are rated at between nine and 10. At self-help groups, participants often refer to “suicide headaches,” and many patients speak of wanting to end their lives rather than continue living with their condition.
Richard Posthuma, Head of Business Operations EMEA North in SAP GCO, has been a cluster headache sufferer since 2009. The pain struck him, quite literally, like a bolt out of the blue. And it has been a frequent and very unwelcome visitor ever since. To begin with, Richard suffered attacks on one or two days a week. “On a bad day, I would suffer up to eight episodes in the space of 24 hours,” he says.
There were days when he was fine; and others when he was anything but. Until, that is, about two years ago, when he discovered a study on the Internet that pointed to possible links between cluster headaches and environmental conditions. After reading the study and consulting with his physician, Richard began collecting data about his affliction in the form of an electronic “attack diary.” As a result, he observed that he was more susceptible to an attack when a thunderstorm was approaching ‒ due to the attendant drop in air pressure.
He also discovered that, during an attack, his blood pressure was significantly lower than usual. This meant that he now knew some of the trigger signals to look out for. What’s more, he found that taking Vitamin D supplements seemed to alleviate his symptoms. Armed with all this new information, Richard has been able to drastically reduce the frequency and number of attacks he suffers. “The last six months were the best for a long time,” he says.
But he’s not content to leave the matter there. “I want something positive to emerge from my illness,” he says. He began by setting up a foundation ‒ known as the “Stichting Clsuterhoofdpijn Nederland” ‒ in his native Netherlands to raise public awareness of cluster headaches. This was a vital first step, because many people are completely unaware that the agony they are suffering is caused by Bing-Horton’s neuralgia and that help is available. It can sometimes take years for the condition to be correctly diagnosed.
It also rankled with Richard that so little is known about cluster headaches. He could see why though. Because, having transferred the data from the Internet study into an Excel spreadsheet, he realized that there simply wasn’t enough data available to identify medical patterns with any reasonable degree of reliability.
Using Technology to Aid Therapy
Richard has long been toying with the thought of creating a clinically tested and certified app that cluster headache patients and their physicians could use to track and analyze the condition’s development. The app, he envisions, would be based on an integrated and open real-time platform and would collect both patient information ‒ including biometric data transferred from the sensors that are built into wearables ‒ and GPS-derived mass data about environmental and climate conditions. It would then transform that raw data into actionable smart data and make it available in a standard format.
Clinics and research laboratories could use the material to develop more effective treatments, and users of the app would benefit directly from the experience of their fellow sufferers. But Richard is aware that cluster headache victims will only use the smart app in the numbers required to produce sufficient mass data if it is simple to operate. Because, as he knows only too well, there is no way that anyone in the throes of a cluster headache episode can possibly enter data in an app that isn’t intuitive. And that is chiefly where existing applications fall down. Not to mention the fact that they do not integrate data from external sources, are not certified, and are usually not directly applicable to cluster headaches.
Richard anticipates that implementing his app would involve three phases: the first would consist of the basic app and back-office support, followed by data exchange features and back-office extensions, and ‒ finally ‒ Big Data analysis. Actually building the app is not a problem, he says. Despite not being a developer, he’s confident that even he can design the specifications. “We have all the components we need. We just need to see whether they can provide the right foundations.”
The real challenge, he believes, is to bring together the right partners. “Winning the physicians over to our cause is the key to the entire project,” says Richard. Because they act as both multipliers and advisors to potential app users. To get this key group on his side, Richard speaks at medical conferences and approaches renowned experts directly. He has already managed to gain the support of some prominent members of the medical profession. But he also needs the backing of health authorities, pharmaceuticals companies, and technology partners if he is to get the project off the ground and turn a business case into a sustainable business model.
Richard’s efforts have resulted in some promising links with a number of pharmaceuticals giants. And, with the help of his SAP network, he has made good progress on transforming his vision into reality. He has also received encouragement from the SAP Innovation Center in Potsdam to continue with his plans. With SAP increasingly targeting the healthcare sector as a market for SAP HANA, there are valuable potential synergies to be exploited here. For example, findings from the cluster headache environment could well form the basis for developing more effective treatments for migraine, which affects millions of people all over the world.
Richard might not have the power to stop the attacks ‒ but he may at least be able helping to slow it down.