Although Dr Nathan Lea’s professional career focuses on the role and governance of information systems and technology in health, his motivation and passion for the somewhat geeky field comes from personal experience. Diagnosed at the age of five as having diabetes, Nathan has seen the technology to monitor and manage blood sugar levels progress from slow, cumbersome and managed largely by health professionals, to being far more patient-centred and friendly, faster and digitised. Patients now send their measures of blood-sugars to their doctors, not the other way, and doctors are now faced with asking patients to minimise the flood of results. It’s hard to cope with the amount of data they are being sent.
This is an example of patient empowerment, and for Nathan, it illustrates what information technology, and big data, can do in health. Health informatics, (a discipline that involves the capture, communication and use of data and clinical knowledge to support health professionals and health systems) is a field that dates back not just decades, but Nathan points out the earliest medical records are found on papyrus. However, it is only at the individual level that health records and information go back thousands of years; in the last few decades health information has incorporated computer science, to become health informatics.
Now, with the addition of big data into health informatics, it is possible to crunch massive amounts of data, enabling the delivery of improved individual care when and where it is needed. Big data is the collection of data at massive population scale, massively detailed scale, that in and of itself requires new techniques for storage and for asking queries of it.
Nathan speaks enthusiastically about the benefits. “The types of advances made with the addition of big data to health informatics range from quick data on the pragmatics of running a health service (patient throughput, waiting times in real time, drug usages, costs). It also enables ‘precision medicine’ and targetted therapies, where the scale of big data gives far greater assurance about how therapies will work especially when you can establish links between genetic sequences and specific drugs for treating different diseases.” All of this has arisen from crunching the massive data sets.
When asked about the integration of data sets to link health data to that of other government departments, he says the future is already here. Using single identifiers, administrative data about a person’s health, education, immigration, finances, can be linked – more readily in some countries than others. For many people, this poses Big Brother risks associated with loss of privacy despite promises of anonymity. Nathan’s response to such fears is that we have to take multidisciplinary approaches to all health information work so that its benefits accrue to the individual patients, without risks to the sacrosanct confidential relationship between patients and their healthcare providers. He stresses the need for patients to participate in conversations about how they want their data used, so there are no surprises when they later realise their data has subsequently been ‘re-used’ for other purposes.
The lack of communication around this whole crucial issue of data ownership and privacy is widely understood to have contributed to the failure of care.data in the UK. Care.data was an NHS England and the Health and Social Care Information Centre programme designed to bring health and social care information from different healthcare settings, such as GP practices, hospitals and care homes. Public trust was lost when the consent and opt-out models were not considered satisfactory, and generally the public had no understanding of how their data was being used. The enterprise has been shut down.
Nathan’s work is looking closely at governance processes to satisfy the public that research is governed by strong ethics, so that risks to individuals are minimised in research that may result in far better, far faster health outcomes. He is exploring what a trusted research platform will look like for health. He believes the conversation about the acquisition of data must start between patients and their medical practitioners. “The challenge is about how this is articulated in a way that is meaningful for people. We get excited about research and think it’s helpful but we need to ask helpful for whom? We mustn’t lie to people – if there isn’t going to be a direct benefit to participants, they have to know that. We also have to get out of the thinking that we can’t get everyone’s permission; people have a right to say no – there is a wealth of common law entitling people to say ‘no’. There has to be a two way discussion about risks, and this discussion leads to empowerment.” While he wants to speed up the protection of people and use of health data to improve health care delivery and health, he also believes the push for increasing use of big data needs to slow down to ensure people understand and consent meaningfully.
Interestingly, when it comes to actually targeting people, to ensure that those who are missing out on technological advances, those less likely to be accessing quality care, less likely to have their rights to health realized, Nathan said we don’t yet have ‘primary intelligence’. We still need qualitative research to actually talk to people to identify why they are missing out. Big Data technology and health informatics could have a role in collating and analysing interviews, but Nathan warns, “health informatics is a refined tool that is only as good as how we use it”, and policy makers are not always good at asking the right questions.
Big Data has brought greater understanding and opportunity to health informatics, but its use requires the public to be satisfied there is overall benefit to them. The role of human rights in the conversation is to promote the active participation of the public, to empower people to demand that big data works for the benefit of all, and especially for those currently not receiving appropriate or quality health care.
Disclaimer: The views expressed herein are the author(s) alone.