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Healthcare: why a data-rich sector is still knowledge-poor

Listening to Nick Guldemond, it’s clear Big Data and analytics have the potential to deliver nothing short of a revolution in healthcare. Advances the world desperately needs if we’re to cope with a fast-approaching crisis due to global demographics and rising healthcare costs. The question is whether the sector can rise above inertia, lack of vision and vested interests to embrace the unprecedented opportunities the digital age has to offer.

Nick Guldemond, Associate Professor Integrated Care & Technology at the University Medical Centre Utrecht, is ideally placed at the intersection of Big Data and healthcare to see how analytics and data intelligence could benefit our health in a wide variety of ways.“Healthcare is an information-driven process. Ideally, in the provision of care, colleagues across different areas — hospitals, primary care, homecare, social care, etc — will share information, decisions, instructions, planning, etc with fellow carers. So essentially the information flow drives and supports the care process within and across organizations.

“In other words, information has always been crucial in care provision, including areas such as quality assessment and monitoring. But now digitalization is also making information available from areas other than just primary medical data, for example government, municipalities and commercial companies. Areas with consumer profile data that’s often highly relevant to the healthcare of individuals and their peers.”

Connecting disciplines

Nick believes that by exploiting the connectivity analytics can provide, we can get a lot closer to that holy grail of healthcare — a truly integrated, inter-disciplinary approach to personalized patient care.

“The healthcare system has always produced lots of information; but in the past getting it from one area of the system, for example from one hospital department to another or to a GP, was time-consuming. However with our increasing ability to collect and connect information via multiple channels, we can now develop much more integrated care for the patient throughout the health continuum, letting us interact with the patient across the different stages of their disease. Particularly with chronic conditions, at each point in the disease’s development you want to be able to meet the patient’s needs in a collaborative rather than mono-disciplinary way, and access the most up-to-date and relevant information on that patient.

“Big Data also provides the opportunity for different stakeholders to collaborate in that process, so you can get a deeper understanding of the cause of the disease and then better support the planning of care; and, with some additional analytics, identify patterns that will reveal where over time that patient’s behaviour or disease may put them at risk.”

Unbelievable waste

For such a knowledge-driven industry, it’s surprising to say the least to learn how bad the healthcare sector is at linking up its various pools of knowledge. Over recent decades knowledge institutions and university hospitals have built up massive databases on everything from chemistry, genomics and life sciences to physiology, human behaviour and risks. At the same time, there is a vast body of knowledge contained in journals, protocols, standards and so on, also digitally available. But unbelievably, hitherto these two great reservoirs of knowledge have remained largely unconnected to daily care.

“Today’s GP still mainly relies on her experience, plus occasional reference to articles. But there’s almost no use of real-time data mining of these available sources that could be translated into tailored treatments and recommendations for the patient.”

As Nick points out, this isn’t really the GP’s fault. “It’s currently difficult for her to practice genuine evidence-based medicine when it takes too long to source the relevant evidence via articles on the internet and then apply it to the context of the patient sitting opposite her during a consultation that she’s expected to complete in 7-10 minutes. But the technology is there to have a richer profile of that patient derived from multiple sources that would allow the GP to anticipate the needs of that patient beforehand and then inform a tailored approach to their care.”

Radically rethinking research

If you expected university hospital doctors to have better access to information than front line GPs, you’d be sadly mistaken. “In the morning a doctor will carry out research using life science databases, in the afternoon work with patients. But knowledge transfer between the two activities occurs very often only indirectly through professional groups, journals and conferences.”

In fact, Nick foresees a radical change in the way research is done. “Moving from the traditional clinical trials and laboratory-based models, we could enhance research by measuring key effects and impact of interventions directly, real-time and continuously with patients in their everyday setting. We’re also seeing some interesting developments in using mobile technology and Big Data to collect information that wasn’t traditionally part of the study protocol. But with easy access to other data on patients, for example socio-economic information, we can deepen our understanding of the impact of treatments on the patient’s life in other contexts; and vice-versa get insights into how other aspects of the patient’s life are affecting their progress with that particular illness.”

The research graveyard

Nick hopes the digital age will see an end to all that knowledge being lost when, following publication, studies are ‘deep-filed’ in the digital graveyards of journal archives and the researcher’s hard drive.

“Big Data and analytics will mean practitioners can far more easily access research knowledge in their daily practices. So certain diagnostics become easier and certain interventions require less expertise. This means some interventions previously only done in a hospital can be done in the GP surgery or other primary care settings; that home diagnostics will become easier; and that as pharmalogical and diagnostic treatments come closer together, so pharmalogical treatments will become more tailored to the individual patient.”

Better informed, better decisions

Nick sees another untapped information source in the data we accumulate as (potential) healthcare consumers in our everyday lives via phones, tablets, etc; and accumulated on us by municipalities, social services, education institutes and other public bodies.

“This information on everything from your diet or how you plan your life to your broader socio-economic circumstances can provide real-time intelligence to support your healthcare. If you’re healthy to help you stay healthy; if you’re at risk to help you avoid becoming ill; and if you’re ill to avoid deterioration or additional complications. So this data can help provide a care continuum for a patient at a personal level.”

Dance to a smarter tune

While it’s notoriously difficult to change behaviour at an individual level, Big Data can also be used to influence peer groups or people in a given setting. Not by cajoling them to do this or not do that, but by giving them information to make better informed decisions — an approach vindicated by various studies. Nick gives the example of an App developed by a health advice organization for Dutch Dance Festivals.

The App informs festival-goers about ‘unadvisable’ drink and drugs behavior. Users also enter their basic details (gender, age, etc.) and using GPS the health organization can track patterns. For example in when certain categories of people visit the bar. The App then targets health information to more vulnerable groups to trigger individuals and their peers to modify their own and/or each other’s behavior.

“It’s a simple example, but such social analytics could be applied to, say, the workplace or sports clubs. Empowering the health consumer by making him better informed.

Strategy? What strategy?

At the strategic level, where across economies and sectors analytics has for years been delivering real gains, Nick doesn’t exactly paint a rosy picture when it comes to the healthcare sector. “At that strategic level I don’t think there’s a real understanding of what’s going on. It’s a challenge even to get a decent overview of how the analytics/Big Data area is progressing” Ironic, given that a smart use of analytics would certainly help provide that overview.

“The healthcare system is currently very inflexible, inert. There’s a lack of vision about the steps we need to take to make this ‘digital dream’ come true. Plus most healthcare institutions are of course budget-driven, so for them it’s easier to be reactive rather than think what they could do.”

Rock the boat

None of which helps Nick’s clients in his role as mentor at Rockstart, an organisation that helps start-ups optimise their first 1000 days. The old spectre of vested interests looms large for anyone trying to launch a start-up in the healthcare sector.

The very dominant multi-nationals; the monolithic hospitals; the traditional establishment of specialists, nurses and other practitioners… they all have a vested interest in the status quo. Making it difficult for innovations to penetrate this world.

“Paradoxically, an initiative that can save money and improve patient care is viewed with suspicion, precisely because it might do the job better or more efficiently than the establishment currently does. Sadly, this systematic resistance happens at every level from workfloor to governance. So start-ups will inevitably look to partners outside the healthcare system and — being start-ups — find creative ways to circumvent the healthcare establishment.”

At the same time, the healthcare sector desperately needs to engage with this creativity. Not least because the current system won’t be able to meet the challenges of an ageing population. A challenge facing not just Europe, as is sometimes supposed, but most other parts of the planet, including everywhere from China to Russia and Brazil to the US.

Noblesse oblige

Given its leading global position in terms of traditional healthcare, high-speed digital infrastructure, medical academic know-how and more, Nick is particularly disappointed by the Netherlands’ healthcare sector’s performance in the whole area of Big Data.

“It’s shocking, basically. We currently have a very rudimentary exchange of knowledge and there are even major Dutch companies who prefer to make their major investments in innovation abroad, basically because the Dutch health sector is too difficult an environment in which to innovate. Given our many advantages, apart from anything else I think this country has a noblesse oblige to be pioneering in this field. But if we do one of the first challenges will be to reorganise some of the healthcare processes.”

Success stories

But to finish on an optimistic note, in his work across Europe Nick says he does see lots of exciting initiatives using Big Data and analytics to improve healthcare.

“From Scotland to Spain, Sweden to Italy, there are examples where projects connect information and build intelligence to improve healthcare services. So in Liverpool they’re creating a more digital healthcare environment to give health consumers, particularly from disadvantaged socio-economic groups, access to better information. Creating community cohesion in order to trigger positive behaviour within peer groups.

“In Stockholm they’ve integrated healthcare processes with rich use of genomics data, so that processes and operations are geared to improving healthcare services. While in Tuscany, the celebrated InCHIANTI study gathers genomics, social data and all kinds of mobile data to provide intelligence for improvements to elderly care and risk management for high-risk patients.”

But when it comes to the biggest high-risk patient of them all — the current global healthcare system — let’s hope that sooner rather than later ways will be found to leverage the enormous potential that Big Data and Analytics can offer us all.

About Dr. Nick Guldemond

Dr. Nick Guldemond is Associate Professor Integrated Care & Technology and Senior Policy Advisor at the University Medical Centre Utrecht. He studied both Electric Engineering and Medicine (clinical physiology). His PhD was on orthopaedic complications due to diabetes. Over the years Nick has worked at various universities and hospitals on projects round healthcare innovation, medical technology and eHealth. He is advisor to the Dutch parliament on and board member of the Innovative Medical Device Initiative; member of the commission on the national eHealth implementation agenda; and active on several groups and networks in his fields of expertise.To help progress many of the issues referred to in this interview, Nick is a member of the Big Data Alliance