By Dr Vivek Muthu, Director of Marivek Healthcare Consulting Ltd.
In this blog, Dr Muthu makes the case for viewing data as an equally important resource compared to other innovations in cancer care – such as new treatments and diagnostics. He describes how data are essential to understanding areas for improvement in healthcare systems, allowing us to re-design more efficient care pathways and thereby improve patient outcomes.
The term “healthcare innovation” often conjures thoughts of new treatments and diagnostics. We tend not to think of innovation as harnessing the power of data in our health systems. In part, I think this is because it is harder to articulate what this entails and what benefits it delivers. New diagnostics and therapeutics are discrete, and we can easily picture the benefits accruing directly to ourselves or to our loved ones. Harnessing data, on the other hand, is about improving the infrastructure of health. It is a process, not an identifiable product. Its benefits all too easily sound diffuse, bureaucratic, and impersonal.
Why should we care about harnessing data in healthcare – about the move to what we might call a “data-enabled health system”? In a nutshell, because it is key to solving to the problems that threaten the very viability of our health systems, and because it will deliver substantially better health outcomes for each and every one of us.
As has been described by All.Can and others, our health systems are under pressure. In OECD countries, the cost of healthcare has been increasing at a rate that exceeds economic growth, while demand for health services is also increasing. As a result, it is becoming ever harder to ensure equitable access to optimal healthcare and to the technologies and services that support it.
A major driver of the cost of healthcare is wasted resource. It has been estimated that 20%-30% of the money spent on healthcare in Europe gets wasted on, among other things, ineffective treatments and services, inefficient care processes and avoidable complications of healthcare.,, Unwarranted variation is a major contributor to this waste: care processes and outcomes vary unaccountably (and sometimes vary a lot) when they should not, between regions and between healthcare providers. Poor care continuity is also widespread. This is underlined by the All.Can patient survey conducted in 2018-19, and is something that many of us may have experienced. Poor care continuity is exemplified by poor or untimely communication, leading to appointments being cancelled or missed, or information or test results not getting to the right place at the right time. Other than wasting resources, the consequences are inconvenient at best, and life-threatening at worst.
All these problems have a lot to do with the quality, quantity, and flow of data within our health systems. Currently, in our health systems, relevant data is not always captured, or may be captured incorrectly, or the data might be of poor quality. Data might not cross between different information systems: if data doesn’t flow, it can’t be tapped. Without flows of good data and good data analytics, healthcare is effectively a black box. We can’t see what we spend money on; what we deliver in terms of patient benefit, or how and why processes and outcomes vary. This means we can’t address issues of poor resource allocation, ineffective care or unwarranted variation. Similarly, without better data infrastructure, we can’t guarantee that relevant information will be available to the right people at the right time when delivering care, so we can’t address issues of care continuity. Without comprehensive, high-quality data, we can’t address the causes of waste in our health systems. We need to invest in the data infrastructure of our health systems: the alternative is to respond to the mounting financial pressure on health systems by limiting access to services, treatments and innovation – a solution that will hurt all of us.
A data-enabled health system not only fixes these problems, but it also enables a radically different and better kind of health system. Millions of us interact with our healthcare systems each year. Each interaction yields information, from our symptoms, our health records, our scans, our lab tests, our genetic data, our treatments and our outcomes. If we could collect all this information systematically, bring it all together and analyse it effectively, it would be a treasure trove for making better decisions for each and every patient, for improving the efficiency of our health systems, and for accelerating innovation. We could rapidly assess what works, what doesn’t, how diseases progress, what needs are being systematically unmet. We could identify and prioritise preventive strategies and treatments more effectively and make better decisions about how to allocate precious healthcare resources. As well as being informed by clinical trials, medical education and personal experience, our health systems and healthcare decisions would be informed by the continuously accumulating wisdom of millions of daily real-world interactions and experiences codified within the data.
A data-enabled health system is a health system that not only delivers better care and is financially sustainable, but also becomes its own engine of research, development, learning and iterative improvement. It powers greater access to services, it powers better understanding of health, and disease. It powers innovation and better-informed decision-making. It leads to greater transparency and greater accountability of our health systems for the services and outcomes that they deliver.
Implementing this transformation will require better data generation and collection and better data curation. We will need data systems to be able to talk to each other, and we’ll need analytical capability to transform data into insight, and governance structures to ensure probity. This may sound like a mountain to climb, but it is very do-able provided there is the political will and investment, and we as citizens buy into and support it. Indeed, many of the technologies already exist, and there are already major initiatives already underway in many countries and regions. We can accelerate this transformation if all of us; patients, providers, health policy makers, payers, and industry, take up the cause.
Harnessing data in our health systems is an urgent priority. It is a tide that floats all boats. Knowledge is the enemy of disease. Just as clean, clear water once revolutionised health, we now need clean, clear knowledge, borne of good data and evidence-based analytics, to revolutionise health once more.
Data turns health care into better health. Data enables equity, access, and sustainability. Data-enabled healthcare fosters innovation. Data saves lives.
ABOUT THE AUTHOR:
Dr Vivek Muthu is a Healthcare Consultant serving various roles, including with the European Bank for Reconstruction and Development, and advising several healthcare start-ups. Prior to this, Dr Muthu worked as a doctor in the UK National Health Service, before joining the British Medical Journal where he helped to develop and lead a team examining the clinical value of drugs and devices. He then went on to found Bazian – a company dedicated to developing and servicing the needs of value-based health internationally, which was then acquired by The Economist Group. Dr Muthu is a founding member of All.Can International, and actively participated in the development of the recent All.Can report, Harnessing data for better cancer care.
 OECD. 2015. Fiscal Sustainability of Health Systems. Available from: https://www.oecd.org/health/health-systems/Fiscal-Sustainability-Health-Systems-Policy-Brief.pdf
 Panagioti M et al. 2017. Preventable Patient Harm across Health Care Services: A Systematic Review and Meta-analysis. Available from: https://www.gmc-uk.org/-/media/documents/preventable-patient-harm-across-health-care-services_pdf-73538295.pdf
 All.Can. 2019. Patient insights on cancer care: opportunities for improving efficiency. Available from: https://www.all-can.org/wp-content/uploads/2019/07/AllCan_international_patient_survey_findings.pdf
 We have only just begun to translate genomic insights into health benefit. The task of harnessing genomics is made exponentially harder by the fact that it’s almost always the interactions between many genes and the environment that matters for our health. So, if we want to tap the revolutionary potential of genomics, we will need to examine genetic data at scale, mapped against disease and other external data, and we will need high-powered analytics to help us derive insights from the data.
 This includes issues of confidentiality, data protection, trust and cybersecurity.
 Quote adapted from Sir Muir Gray, former Chief Knowledge Officer, UK National Health Service.