Does big data deliver on its promises – and what does the patient really think?
Over the past 20 years, big data has exploded with larger, more complex and new data sets to analyse and turn into actionable insights. Healthcare is no exception to the rule – the NHS for instance has been collecting Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs) for the past 10 years but are we getting the full benefit from them?
“What if we could work in partnership with patients to easily capture their own feedback about their experiences and outcomes?”
The promise of big data
As recent as the early 2000s, fax machines were heavily relied upon by the NHS – and still are to some extent, although they’ve now finally been banned by Matt Hancock. Widely used electronic Patient Administration Systems (PAS), were exactly that; systems used to administrate patient appointments only. PAS have evolved and are now often part of integrated Electronic Patient Record (EPR) systems – with a greater focus on collecting clinically relevant patient data.
The much-maligned National Programme for IT (NPfIT) Government initiative, launched in 2002, may not have delivered the panacea it set out to, but the £10bn spent certainly moved digitisation along, with a large number of hospitals adopting EPR and radiology picture archiving and communication system.
Although we’ve seen some great leaps in the quality of patient real-world examples of how this data improves healthcare outcomes, data is still very siloed to individual hospitals and other care providers. This makes it a challenge to manage health across populations including primary, secondary and social care and gives patients the impression of a very disjointed experience as they navigate between providers.
The Secretary of State for Health and Social Care Matt Hancock has announced the launch of NHSX through his Tech Vision, building on the NHS Long Term Plan launched in early 2019. The overall aim of NHSX is to improve health outcomes for patients, free up time for NHS staff to focus on patients, and explore how technology can also help both service users and staff of social care – all through leveraging technology better. Sounds familiar? Is this a re-run of the failed NPfIT programme? Not necessarily; this programme sets out to promote integration and data exchange between existing systems such as EPR, rather than setting about to replace them all with one new system.
If a success, this will absolutely help drive improvements, both directly at the frontend for patients and health providers, for instance patients could have a complete view of their end-to-end journey of care through all care givers, and also for more strategic transformation of care and treatments through better analytics based on much richer datasets.
Life changing data
The value of this data has also transformed in line with the improved quality and the volume of data collected. Analytics are evolving from basic descriptive reporting on what has happened, to the world of predictive analytics, where machine learning, data modelling and artificial intelligence (AI) techniques are helping to predict the likelihood of an outcome, based on patterns in collected data.
This clearly holds a lot of promise in a clinical environment, where early diagnosis and accurate intervention can mean the difference between life and death or at least a speedier positive outcome for the patient.
We are entering an exciting new world of true patient centric care and personalised medicine. Health and social care providers have the ability to collect more data than ever before, through a variety of clinical systems and devices. However, these are all data points we can measure. What if we could work in partnership with patients to easily capture their own feedback about their experiences and outcomes, and what if we could structure this feedback in a way that would provide a new perspective?
There are plenty of examples where healthcare, life sciences and health technology industries have become very good at collecting and using non-identified, patient-level data to improve health outcomes. Despite NHS policies to have patients at the centre, patient experience is not systematically captured. Engaging directly with patients and carers to garner their thoughts and experience will not only further engage them in their own care, it will also provide valuable insights to health commissioners and providers, life sciences and health researchers alike. This works both from an interventional perspective, where healthcare professionals can proactively act upon feedback from patients, and also from an observational perspective, where services, treatments and therapies can be improved based on the evidence provided by patients.
The value of PREMs and PROMs is immense. It’s a unique opportunity to get first-hand feedback on experience and outcomes from patients during treatment, involved in research or as part of a clinical trial. A combination of relevant Patient Reported Outcome (PRO) instruments, such as EQ-5D Quality of Life, or more disease specific ones, and other outcome and experience measures, will help bring patients and pharma closer together, build trust, inform how to drive further improvements in treatment, reduce the cost and burden of care and even avoid illness. Triangulating this data with observations and feedback from physicians and relatives, not to mention the vast amounts of patient data already collected, provides further insights yet.
Despite these obvious benefits, PROMs and PREMs are often not used to their fullest extent, if at all. Barriers include the quality of the feedback collected and the cost and timeliness of collecting the data in the first place. New digital methods of collecting PREMs and PROMs – commonly referred to as ePRO – are now able to help to tackle these concerns. Next-gen electronic patient data capture platforms, such as IQVIA’s Patient Data Capture platform, recognise the importance of keeping the patient engaged and ensuring they continue to provide feedback throughout the scheduled period and beyond the first few data collection points. This is done by making data capture flexible and simple, while providing the patient with real-time feedback based on their responses. This approach helps patients to better manage their condition and treatment and provide further relevant insights – making them feel confident in the knowledge that someone can intervene if necessary.
Real time insights
From a study management perspective, it’s immediately apparent if PRO data isn’t being provided to the required schedule and automated interventions can be triggered as necessary. PRO instruments can be presented in easier to complete formats, while ensuring these formats are validated and approved by the licence holder. This also means that data is available in real-time to pharma at a higher quality, delivered at lower cost.
As a population, we’re surviving longer and are living with more complex diseases than ever before. Continuing to improve data integration and quality, enhance AI algorithms to spot more issues and provide earlier diagnosis using big datasets, are all critical steps to meet the longevity and disease complexity issues we face as a society. These challenges require improved access to care and personalised medicine and will no doubt improve quality of life for generations to come. However, if we truly want to make medicine patient centric, we must embrace real-time PREMs and PROMs, coupled with closer alignment and trust between healthcare providers, patients and the pharma industry.
Hans Solgaard is Director, Healthcare, IQVIA.
Go to http://www.iqvia.com