A patient-centred approach is crucial to successful health data collection, furthering clinical research and developing innovative solutions to real peoples’ needs


Chief Executive Officer, Health Research Charities Ireland, Dr Avril Kennan outlines the value of data sharing for improving care and the furthering of clinical research, and how truly integrating the patient’s perspective throughout the solution will achieve better outcomes. Dr Kennan is also a member of the Irish expert panel for the FutureProofing Personalised Health Index, which is supported by Roche.

You may not realise it, but we are buried under a data tsunami. The increased digitalisation of everything means that the amount of data that exists grows exponentially every day. This data is a veritable goldmine, perhaps nowhere more so than in the area of health and clinical research, where it can help improve patient outcomes and find effective treatments. We know that healthcare is only as good as the research that underpins it, and that clinical research must be an integral component of a fit-for-purpose healthcare system.

Yet Ireland has been historically poor in terms of its data collection and subsequent usage as part of clinical research. For example, we saw with the recent Covid-19 vaccine rollout that there were challenges in identifying patients who qualified as medically susceptible to severe disease. That is due to Ireland’s lack of patient registries – while we have a strong cancer registry and some other notable examples, these remain anomalies despite the growing digitalisation of health. This is a major Achille’s heel as patient registries are a powerful tool when it comes to evaluating health outcomes, instigating research projects and identifying patients for clinical trials or vaccine prioritisation. In particular, patients with rare diseases are losing out because of this failure to collate their data. Clinicians, researchers, patients, and charitable organisations understand the importance of cohesive patient registries, yet there has been minimal financial or practical support for them to date. This is just one area where our European counterparts are light years ahead of us – as highlighted by the Addressing this deficit must be a priority in any reform of our healthcare system and its IT infrastructure.

Indeed, we can only ensure better health outcomes by learning from our past successes and failures, and by integrating the patient experience into the solutions that we put in place. Real-life patient data is a rich seam of information that clinicians and researchers can mine with a view to developing innovative medical solutions.

Core to successful health data collection and use is patient buy-in, for this ultimately must be a patient-centred approach. At HRCI, we know that involving patients and their representatives in the shaping of research will make it more relevant, better quality and more impactful.

Increasingly we find that empowered and informed patients are eager to help further research into their individual conditions. Patients are often willing to share their data because, simply put, they have more skin in the game. Altruism is also a factor; people are generally willing to contribute important information if they believe it will help others like them in the future. However, we must ensure that the benefits of this are adequately communicated; not all patients are necessarily aware that if they take part in a clinical study, they are more likely to receive better care or that they may get earlier access to innovations such as new medicines and treatments. In addition, a robust but accessible and straightforward consent process will help to foster trust in those more wary of sharing their data.

Public buy-in is also important, as we become increasingly aware of the value of our data and the pros and cons of sharing it. We are reminded of this every time we click on a new website. The shift to data collation and harvesting with a view to enabling and ensuring better outcomes for us all may be a hard sell for some, bruised by previous transgressions in terms of privacy within the health service or wider public sphere. All aspects of the collection and use of health data must be done in an ethical and socially-conscious manner to ensure long-term trust by the public. Fostering that culture of trust and transparency will necessitate hard work and a strong commitment.

Indeed, trust and transparency will be the determining factors, and a clear and succinct public health information campaign will be required, one that effectively articulates the value of sharing your data for research purposes, and how a person’s privacy is protected by current legislation. The benefits of data sharing in furthering clinical research and developing innovative solutions to real needs for real people must be communicated effectively; Encouraging this civic participation is essential when it comes to breaking down barriers to truly innovative clinical research.

Lastly, political buy-in is a must. While much of this move towards data sharing has been articulated within the Sláintecare Implementation Strategy, the rub will be in its implementation, given that it represents a sea change in how we have accumulated and utilised patient data to date. Strong leadership is required so that we do not miss the opportunity to make the most of the potential of patient data to improve lives.

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