Importance of valuing our precious health data, and utilising it fully for the betterment of healthcare
A patient-centred approach to personalised healthcare is fundamental to its successful implementation, writes Dr Derick Mitchell, PhD, Chief Executive Officer, IPPOSI. Dr Mitchell is also a member of the Irish expert panel for the FutureProofing Personalised Health Index, which is supported by Roche.
The paternalistic “doctor knows best” model of healthcare is thankfully a thing of the past. In recent years, healthcare has moved towards a model that sees the end user – the patient – placed firmly at the centre. Shared decision-making is the order of the day, with the patient having input when it comes to their treatment and outcomes.
As healthcare becomes increasingly tailored to the individual, this approach becomes even more crucial. Personalised healthcare, or providing the right treatment for the right patient, relies on information – the patient’s data – to provide tailored treatment with a view to ensuring better outcomes and more efficiency for our stretched health systems.
Yet Ireland has been historically poor at gathering patient data, despite the proven advantages of utilising this information for the betterment of healthcare. The data we do have is patchy, poor quality and held in siloes; indeed, most of it is never collected at all, simply disappearing into the ether. This is nothing less than a travesty – this information is invaluable when it comes to improving health systems, furthering clinical research and discovering new therapies and treatment approaches, all geared towards the individual patient.
This was made further evident when looking at country comparisons in the FutureProofing Healthcare Personalised Heath Index. The quality of the data in the Irish system hasn’t come up to a certain minimum standard in order for it to be interoperable or shareable between systems.
Save for a few notable examples – cystic fibrosis, for one – we do not have up-to-date and appropriately funded patient registries. These databases would also allow us to monitor the real-world effectiveness of medicines, which is a crucial piece – Irish patients wait far longer for access to innovative medicines than our European neighbours^1, and proof that a medication is safe and effective for patients is a solid argument for its reimbursement.
Underpinning all of this would be a national systemwide Electronic Health Record (EHR) solution, which would provide high quality, reusable data. This is an initiative that is enshrined in an ambitious eHealth policy but has lost momentum in recent years. Not only does it require political impetus, it will also necessitate significant financial investment. The business case for this has already been made; exemplars such as the use of EHR to great effect in maternity care, as well as individual ‘lighthouse’ projects in areas such as epilepsy, have shown that this is the gateway to unprecedented efficiencies within our health service. A properly implemented and resourced EHR would allow for a seamless patent journey throughout the healthcare system, between doctors and departments and facilities, from primary to secondary to tertiary care and back again.
But patients must be on board with this. Granted, the international evidence shows that patients are willing to share their data, not only for the enhancement of their own care, but for its secondary use in treating other patients with that condition, for furthering clinical research and invoking change across the wider health system.
But our data is precious, and by its very nature health data is extremely personal and private. Reassurance must be provided by way of transparency – how is my data being used? Why is it being used? And what does it mean for me and society at large? Information governance, security and consent are just some areas that will require a significant education piece when it comes to asking people to share their data. Meaningful dialogue with patients must be a cornerstone of any such move, whereby the individual and personal benefits of sharing this information are communicated effectively, and any concerns listened to and acted upon. We need to create a situation where informed and empowered patients are the drivers of their own data.
The promise of personalised healthcare may not be an obvious sell. But as we move away from “one-size-fits-all” medicine and towards a system where tailored solutions are devised that meet the individual’s needs and ultimately improve their outcomes, personalised medicine also means planning for the health service we will need in the future.
Despite the massive disruption to our health services caused by the Covid-19 pandemic, it has been a learning curve in terms of the role that technology can play in care delivery and even care improvement. Teleconsultations and mHealth and eHealth initiatives have allowed clinicians keep in touch with their patients, even when non-urgent care was cancelled. Over one million of us have the Covid-19 tracker app on our smartphones^2, logging our symptoms or lack thereof, and helping to track the spread of the virus. The power of this data in our pockets is something we can all appreciate.
Ireland must formalise its data-gathering approach across the health system and commence a massive upgrade of our existing data, to ensure that it reaches the minimum standard for use. Significant investment is needed, not just in our IT infrastructure, but in the trust and relationship between the users of our healthcare services and those who run them. Strong leadership must drive this. Above all, meaningful dialogue with patients will be a key building block of any data sharing initiative.