Delivering Personalised Healthcare in Ireland

Developments in civic participation, EHR and genomics can lead to improved personalised healthcare in Ireland, writes Mary Maguire, Personalised Healthcare Lead, Roche Products (Ireland) Ltd. Mary is also a member of the Irish expert panel for the FutureProofing Personalised Health Index, which is supported by Roche.

The Covid-19 pandemic has transformed Irelandโ€™s health service overnight. Gaps and deficiencies have been harshly exposed, but its inherent innovation, agility and ingenuity have come to the fore.

We must use this time of accelerated change to think about how healthcare is delivered in the long-term, and to consider what kind of health service do we want to build? How do we futureproof it for generations to come?

One area that Roche has been committed to in recent years is that of personalised healthcare. Although the term can be subject to multiple interpretations, ultimately this means moving away from the โ€˜one-size fits allโ€™ approach to healthcare, placing the patient firmly at the centre and offering the appropriate treatment tailored to their individual needs. Personalised healthcare promises not only a smoother journey and enhanced outcomes for the individual patient but embeds efficiencies into the entire healthcare system, as resources are used in a more targeted and effective manner.

The Futureproofing Personalised Healthcare Index is an initiative that seeks to evaluate fundamental components of personalised healthcare: Health Context, Planning and Enablers; Health Information and IT; Health Products and Technologies; and Health Services. The development of the Index was overseen by an independent panel of global health policy experts, in partnership with Roche, and all the data within the Index comes from accredited publicly available sources.

The goal of the Index is to identify best practices, while also highlighting the areas where improvement is needed. While there were some areas in which Ireland performed well, it is perhaps unsurprising that we ranked poorly overall, coming in at 19th out of 34 countries assessed within the Index.

One glaring chasm is our data collection, or lack thereof. Delivering personalised healthcare will require sophisticated data collection and the sharing of data for research purposes. ICT deficits in the health service mean that the data we do collect is often of poor quality, while much of it simply disappears. This regularly precludes Irish patients from having the opportunity to partake in ground-breaking international clinical trials. Weโ€™re losing out on these potentially life-changing developments for patients and on the research attached simply due to lack of infrastructure.

Ireland also suffers from our failure to adopt digital health initiatives โ€“ we still do not have a system-wide electronic health record (EHR) for each patient, despite it being enshrined in legislation some years ago. Capturing data efficiently and effectively and protecting patientsโ€™ rights and privacy while sharing their data for research purposes is a significant challenge. We need to change the conversation to make everyone feel included, focusing on citizen information rather than patient information. Educating the wider public on the value of their data in furthering medical research as well as emphasising its security and the protection provided by the consent process is key to increasing civic participation in healthcare.

Genomic medicine is an emerging field that offers the potential to transform outcomes from serious and rare diseases. Determining the genetic mutations responsible for certain cancers can facilitate targeted treatment, tailored to the individual patient. For example, tumour-agnostic therapies target specific genetic anomalies or molecular features regardless of the type of cancer. To use these in the right patients will require genomic profiling of an individualโ€™s cancer. Yet Irelandโ€™s cancer patients cannot derive the benefits from access to all genomic testing, as โ€“ again - we lack the necessary infrastructure. This area will require huge investment, from laboratories to staff recruitment and upskilling, as more and more of these targeted treatments become available.

One of the cornerstones of personalised healthcare is sustainability. Irish patients currently wait much longer than most of their European counterparts for access to innovative therapies โ€“ the average wait is 500 days2, while for some rare diseases this can be up to 800 days3. New sustainable models of payment and value for medicines need to be explored in Ireland, particularly for rare diseases, as we seek enhanced value for the money we invest in healthcare. This will help to ensure that Irish patients do not have to wait to access life-changing or even life-saving treatments.

Yet Ireland has excellent examples of health policy. The National Cancer Strategy has been a major success story, while our eHealth strategy and Slรกintecare offer the promise of a modern healthcare service fit for purpose. But effective implementation of these policies will require a multi stakeholder approach, with Government, industry, academia, healthcare professionals and, most importantly, patients, working together to ensure they become a reality.

Moving towards a system of personalised healthcare will require careful planning. Trust and transparency will be essential: this new approach to healthcare will require significant buy-in from policymakers, healthcare professionals, and, of course, the public. Advocacy and awareness will be critical components of this approach as we strive to communicate the benefits of personalised healthcare. The Covid-19 pandemic has made us all realise in the harshest of ways how our individual actions contribute to the health of society as a whole. Now is the time to build on that and plan a future where personalised healthcare is the norm.




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