Better research thanks to shared Health Data

Swiss healthcare researchers are increasingly embracing technological advancements, leveraging vast amounts of Health Data. Sharing Health Data presents opportunities for patients, researchers, and the healthcare system.

The benefits of data sharing are clear— improved healthcare quality, medication safety, clinical and diagnostic tools, and research opportunities. For example, longitudinal Health Data reveals disease patterns and trends that when combined with artificial intelligence (AI) enable deeper research, more accurate predictive models, and innovative treatments. Digitalization and data sharing also can improve early illness screening by flagging potential health issues before symptoms appear, potentially transforming patient outcomes.

Sharing Health Data aligns withleveraging technology to make significant strides in medical treatment and disease prevention, ensuring a healthier future for everyone.

Data is the lifeblood of research, advancing science through evidence-based findings. Researchers rely heavily on data; hence, the importance of data sharing for research cannot be overstated. Sharing data provides researchers with a larger resource to address questions, increasing statistical power and confidence in findings.

Sharing Health Data means more accurate and comprehensive research into understanding diseases better and developing more effective interventions. Sharing also fosters cross-discipline collaboration, which is crucial for a holistic understanding of patient health through merging various perspectives and supporting innovation.

Patient benefits are significant. In particular, understanding the long-term effects of medications allows for timely treatment adaptations, and may also offer lifestyle recommendations or early interventions that could improve health outcomes. Data diversity ensures medical research and health interventions are effective across the entire population, not just a subset.

Researchers use clinical trials as the cornerstone of medical research for new medicine registration. Trials are conducted under strictly controlled, time-limited environments with specific participant criteria, yielding a high degree of certainty about findings, under specific conditions. Health Data, sometimes called real-world data (RWD), on the other hand, includes electronic health records, insurance claims, patient registries, and wearable devices.

Many of us have been collecting and/or sharing Health Data for years. Health Data offers researchers information which is diverse, reflects actual clinical practice, and consists of constant observations. For example, up until 1993, women were excluded from clinical research and trials. 1 This data gap means there is a lack of knowledge about conditions that predominantly affect women or how a disease may affect women differently.

Analyzing Health Data further offers researchers information through constant monitoring about the effectiveness, safety and value of intervention in a patient’s real-life setting, informing decisions in clinical practice. This helps assess treatment impact, supports evidence-based decision-making and can lead to new medical uses or label extensions.

Health Data can help early disease detection and pre-screening decisions. Researchers can better understand diseases, trajectories, and treatments using Health Data because it provides critical early-stage insights into a patient’s baseline health. This understanding can help optimize health outcomes and address health issues earlier.

For approved medicines, ongoing Health Data concerning diagnosis, treatment, usage, side or unintended effects, and lab tests is vital. This data helps identify treatment adjustments and improvements.

Data sharing in Switzerland is currently difficultFor example there are many different data collection systems, data is not always collected in the same way and there are different procedures in different hospitals. Databases that researchers could use sometimes do exist, but processing can take months due to highly bureaucratic efforts. Researchers need to complete these processes every time they ask a new question, even when they want to access the same data. 

Switzerland’s current legal landscape makes sharing Health Data complex. Researchers agree that data privacy and security is paramount, although current regulations pose challenges for researchers and institutions. Data ownership, particularly in complex cases, is often unclear and there are diverging opinions on effective ways to make data anonymous. Legal and regulatory ambiguities deter researchers from pursuing research questions due to the perceived risk they may do something that does not comply.

Researchers can access data from other sources, such as from abroad, but this data is costly and does not reflect Swiss-specific health needs. Another possibility is sharing data, for example between two Swiss institutions. This broadens the data pool, but lacks the statistical power of larger, diverse data pools. 

Despite Swiss public consensus on data-sharing benefits, trust issues persist, in particular concerns about sharing data2 with private-sector researchers in relation to privacy, storage and commercial exploitation. Such issues highlight gaps in Swiss public policy in relation to ethics and security. Switzerland needs an integrated and trust-based approach to data sharing to enhance healthcare research and public health policies.

Sharing Health Data is important to help Roche continually innovate and improve healthcare. With comprehensive, diverse data sources, Roche can accelerate its research and development efforts, leading to more effective healthcare outcomes. Sharing Health Data with researchers in companies like Roche can profoundly improve both patient outcomes and public healthcare innovation. 

A prime example of these benefits in action is the Precision Oncology Program (POP), developed by Roche in collaboration with the University Hospital Zurich and the University of Zurich. This initiative aims to improve the care of cancer patients in Switzerland by analyzing large, personalized datasets. These reports help doctors make decisions and improve patient care. The program shows how Health Data can lead to better medical procedures and better treatment outcomes for patients. 

While data sharing holds immense potential for advancing healthcare and research, it also presents significant challenges that need to be addressed to ensure effective and ethical practices. Roche recognizes a person is behind every data point and ensures that our researchers understand and adhere to ourThese principles address ethical issues including data quality, transparency, accountability, and security. Upholding the highest standards fosters trust and cooperation in healthcare data sharing.

Data sharing in healthcare highlights the need for collaborative efforts between healthcare providers, researchers, and technology developers to maximize the potential of data to advance medical research and patient care. So everyone can work together, we need clear rules and technologies that safeguard data and protect patient privacy

The current laws in Switzerland make it difficult for researchers to gain important insights. Better data sharing could make healthcare in Switzerland more proactive, preventive and personalized.

References

1. Mauvais-Jarvis F, et al. Sex and gender: modifiers of health, disease, and medicine. Lancet. Aug. 22, 2020; 396(10250):565-582. DOI: 10.1016/S0140-6736(20)31561-0

2. A Swiss digital healthcare system: What the population thinks. Digital Health Study. 14. Dez. 2022