When Anil Sethi’s sister was diagnosed with stage four breast cancer, it reinforced to him the lack of control patients in the US have over their own health data. In a fragmented system, where a patient may see many clinicians across different states who are all bound by strict data disclosure regulations, it can be a rigmarole to have to explain each time their current and past medications, the results of recent lab tests, past diagnoses and so forth.

Sethi’s response is Gliimpse. The veteran healthcare entrepreneur is developing an app which aims to digitise health by downloading “health information that is available to [patients] on distributed and fragmented portals”. It will give people an online mechanism for collating essential medical data and converting it into a more understandable format.

The idea is that a patient will be able to connect their data with other apps that could, for example, check a profile to alert someone to an overdue mammogram or monitor blood pressure or glucose levels and prompt a doctor to call when they are too high or low.

Gliimpse is still at a very early stage, with a beta version currently being rolled out, but the immediate benefits of its use in healthcare are potentially huge.

Power of apps

Disruptive healthcare technology is increasingly gaining ground in a world where smartphone health apps and wearable tech are becoming ubiquitous. There are now more than 40,000 health apps available on iTunes alone.

“We very interested in the potential of apps to empower people to look after their own health and to manage their own conditions”, says Dr Maureen Baker, chair of the UK’s Royal College of General Practitioners, adding that health data technologies are “on the threshold” of wider adoption.

At an advanced level, medical researchers could mine patient data to better understand the cause of diseases or the efficacy of particular drugs, according to the Wellcome Trust – information that doctors can then use to improve clinical diagnoses, medical interventions and service delivery. This is something Sethi also hopes Gliimpse will help achieve by allowing patients to donate their data to medical research, making health part of the “sharing economy”.

Making patient records accessible can also serve to identify possible participants for clinical trials and other health research projects. Electronic healthcare records from the UK government-funded Clinical Practice Research Datalink service, for instance, were recently used in a major study to determine if a group of asthma medications are harmful to heart health.

Too much data, too little time

But for all its promises, technology has shortfalls. The hurdle is not in generating healthcare data but in compiling and processing it.

The US federal government and other public bodies have been opening up healthcare data for several years now, including clinical trial data but the industry lags behind other sectors such as retail and banking, according to a McKinsey report. Barriers include data protection concerns but also cultural issues within the medical profession. Many clinicians are less inclined to trust big data and more likely to rely on their own judgment.

Even in the UK where government agencies such as the Health and Social Care Information Centre have made sets of primary care data publicly available, there has been little progress in terms of analysing or using such information, a recent report by the innovation charity Nesta found.

Many records in the UK system are either still in paper format or held in electronic silos, says Adrian Downing, director of healthcare at Concentra Consulting, a technology-focused advisory firm. “That means an individual still doesn’t have a complete electronic or even paper record of their health status. As for any tests or procedures from non-NHS providers or patient-generated data, forget it,” he says.

The market is not without its innovators. Orion Health’s Rhapsody “integration engine” is now being used by a number of UK hospitals to pull in patient data from multiple datasets. Apache Hadoop, meanwhile, provides an open-source framework for storing and processing large quantities of data, such as health records.

Cultural barriers

Even if these technological hurdles can be overcome, breakthroughs in data provision will only make a meaningful difference if medical practitioners adapt. Culturally, medics are accustomed to controlling what data is taken from patients and how it’s used. Little surprise, therefore, that the Royal College of General Practitioners was quick to question government plans last year to link GP records with hospital data.

Again, notable exceptions exist. Time for Medicine, a private healthcare service founded by clinicians, for instance, provides a digital “telehealth” software platform that allows for remote diagnosis. The company, which was spun out of the University of Wales, is commencing a pilot to analyse skin conditions via information and images provided digitally by patients.

For the most part, however, doctors often lack the time or capacity to take on more data. “If you were to say, here are 20 more pieces of information provided by the patient, most clinicians aren’t going to do anything with it, so what’s the point in having it?” says Concentra’s Downing.

Finally, of course, there’s the problem of public trust. Recent revelations that the NHS ignored requests by up to 700,000 patients not to share their data with third parties does nothing to calm public privacy fears. While the failure of the Google Flu system – where the company claimed internet searches could predict flu outbreaks – has dented some of the trust around big data and healthcare.

However Penelope Dash, director in the healthcare systems and service practice at consultancy firm McKinsey, does believe public attitudes could be softening. A former vice-chairman of health think tank The King’s Fund, Dash says there is now a “massive public drive for transparency” in healthcare.

“That is then reflected among politicians who recognise that greater transparency is where we need to be and that we need technology and shared data records to do all this,” she argues.