Exploiting the Potential of Personalised Medicine for Patients


Healthcare services must build public trust and develop the data infrastructure needed to deliver on the opportunities being generated by innovative therapies, writes Mary Harney, Independent Director and Business Adviser, Former Deputy Prime Minister and Minister for Health in Ireland. Mary is also a member of the Irish expert panel for the FutureProofing Healthcare Index, which is supported by Roche.

 

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There are reasons to be more positive about the future of healthcare globally. There are now greatly improved prospects for major improvement in outcomes for many diseases and chronic conditions. For example, medical research and innovation in the field of gene therapy promises significant advances in the case of hitherto intractable conditions. Innovation in pharmaceutical products and in medical devices has accelerated sharply in recent years and the expectation is that this will continue.

Big challenges remain in order to make this optimism a reality for patients. Public trust, a comprehensive, resilient data infrastructure and innovative pricing mechanisms are some of the pressing issues for all stakeholders in this modernising transformation of healthcare. Organisational change will be a necessary part of this future – many silo-like systems will inevitably be replaced by patient-focused models of delivery that facilitate personalised medicine and yield better outcomes. Delivery of the right treatment at the right time and in the right place could be the mantra for good healthcare.

The performance of healthcare systems across European countries presents an uneven picture. As a member of the expert panel for the FutureProofing Healthcare initiative, I have participated in a country-by-country review of the performance in relation to specific disease areas over the past number of years. The results were incorporated in Indices allowing comparison of data and information across countries so that examples of best practice, learnings and innovation can be identified. The most recent study looked at preparedness for implementation of personalised healthcare in different countries. My own country was scored at about average of the 34 countries involved, reflecting a relative underdevelopment of infrastructure for personalised medicine. While hospitals and other healthcare delivery entities in Ireland do collect masses of information, it is not by any means used to its full potential. Some hospitals have conducted excellent pilot programmes transferring data to digital portals with considerable success, but a national framework is still in its infancy. As the transformation process underway is advanced it is vital that it encompasses a modern integrated IT infrastructure that includes electronic patient records and patient disease registries (in addition to the existing cancer registry).

At EU level, the European Commission has been working towards the creation of a “European Data Space”, the idea of which is to enable the sharing of health data right across the EU, to improve treatment outcomes and boost research. The FutureProofing Index gives clear evidence of the urgent need for this, showing as it does a wide disparity among EU countries in their capacity to optimise the use of health data sharing. The EU can only be at the forefront in the application of emerging innovation in healthcare if all of its member states step up their investment in the relevant data infrastructure.  The benefits will be Europe-wide, but the main responsibility lies with member states. Pressure on national budgets will inevitably characterise the post Covid-19 situation but the link between public health and a healthy economy has been strongly underlined by the pandemic.

The sense of solidarity and societal cohesiveness that has been the dominant hallmark of the response to the Covid-19 pandemic will go some way to creating a realisation of the kind of health service we envisage for the future. Surely, as the crisis and its broader effects on society persist for much longer than expected, voices of discontent are being heard. Nevertheless, great positives emerged. The extraordinary speed with which vaccines were developed showed the value of commitment, and collaboration among scientific institutions and pharma companies with the support of public authorities. Another example was the speed with which healthcare services adapted to apply available resources in new ways – for instance, the use of telemedicine became the norm for many interactions with patients. Certainly, this could not have been expected to be a story of universal success, but the positive lessons will hopefully be drawn to improve the future of healthcare.

Data protection and privacy concerns naturally arise around the use of health data and ‘real world evidence’ for research, development and application of personalised healthcare. Scepticism, informed or otherwise, is to be expected. Open, sympathetic and reliable communication on the part of developers, regulators and healthcare policymakers will be important as these innovations are brought into use. Anonymisation methods to treat data for research purposes has been shown to be reliable and acceptable to data protection authorities.  The public, in particular patients and their families, must be convinced that sharing their data for use safely and securely within a genuine research context, will ultimately help to improve treatments and outcomes for patients, as well as future generations. Good communication is key.

Public trust is at the same time valuable and fragile – very much worth working hard to achieve but too easy to lose. Recognising wholeheartedly that the public are stakeholders in the process of development of personalised healthcare is a challenge and responsibility for policy makers and developers.

Application of well-designed digital and other technologies to traditional healthcare systems can yield transformative and long-term health benefits to us all.  Openness to change could be a major positive side effect of the Covid-19 pandemic.

 

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