Why integrated data is critical to personalizing healthcare

In an age where digital music, shopping, and entertainment services cater to our individual preferences, healthcare's one-size-fits-all approach is a stark outlier.

Why, for instance, would a 20-year-old Asian male and a 75-year-old mid-European female receive identical treatments, doses and dose or treatment intervals, when each undoubtedly has distinct health needs? This uniform approach not only leads to inefficiencies but also fails to deliver optimal patient outcomes.

At a time when we're navigating complex global health challenges, from pandemics to chronic diseases, the fusion of technological breakthroughs and a rich tapestry of valuable, sometimes silent, data opens a vital gateway to a model of care that's as finely tuned to individual needs as the rest of our digital interactions.

Personalized healthcare thrives on a comprehensive understanding of the patient, which is often compromised by the fragmentation of health data. T

his issue is vividly illustrated, for instance, by a study of hidradenitis suppurativa (HS), a chronic inflammatory skin condition characterized by painful abscesses, cysts and tunnels under the skin, in Germany.

The study suggests significant differences in patient experiences as reported on social media compared to those documented in traditional health insurance claims.

These findings highlight the disparities in patient-reported outcomes versus clinical data and underscore the immense value of integrating broader and previously overlooked data sources with conventional medical records.

Weaving together information from social media and traditional healthcare systems, we gain a more complete and nuanced view of the patient experience, as well as of conditions like HS, paving the way for precision medicine.

Data silos in healthcare create a fragmented landscape of vital health information, hindering a comprehensive understanding of patient health and journeys. To overcome this and advance personalized approaches in healthcare, a multifaceted strategy is required:

Diverse data types from research, registries, electronic health records, clinical trials, social media and patient app data each offer unique, yet limited perspectives. Social media data, for example, can reveal patient experiences and challenges that are often unspoken in clinical settings. On the other hand, there is claims data, for example, which details the diagnosis a healthcare professional has made and accordingly billed.

According to the study of HS in cooperation with digital health company Temedica, data pointed to a significant (almost 50%) rate of misdiagnosis. While social media data indicated a high rate of misdiagnosis from the patient perspective, insurance data provided insight into what those misdiagnoses were, specifically the conditions that were most commonly and incorrectly coded as comorbid with HS.

The synthesis of these data sources helps create a more comprehensive understanding of the patient experience and the accuracy of HS diagnoses.

The synthesis of these data sources not only leads to more accurate patient profiles and improved early detection but also empowers health insurers, for example, to use this comprehensive information. They can proactively identify at-risk patients and offer early intervention, ultimately enhancing patient outcomes and efficiently deploying healthcare resources.

The journey to personalized healthcare is built on the interconnectivity of health-related data, requiring not only technological innovation but also a shift in data governance and culture. This transformation requires strict privacy standards, interdisciplinary and cross-industry collaboration, and a steadfast commitment to patient-centric values.

The positive response to transparent data sharing in patient companion apps indicates a growing patient readiness for this evolving healthcare model, highlighting the importance of integrity and transparency in data use.

Healthcare's future lies in integrating health-related data into patient-specific narratives, much like crafting a garment tailored to fit one individual perfectly. This integration requires a diverse array of data sources, from patient-reported experiences on social media or patient companion apps to detailed clinical data, to be effectively combined.

With well-crafted incentives as the driving force, the time is ripe for healthcare stakeholders to unite and collaborate, generating and utilizing these insights for care that is not only individualized but also efficient and effective.

As we progress towards a future where healthcare reflects the uniqueness of every health journey, the importance of unsilencing data becomes ever more significant. By giving a voice to a multitude of data sources, we ensure each patient receives the best possible care tailored to their unique needs.

This is not just a goal; it's a collective imperative. Our actions today will shape the health and well-being of generations to come. Let us embrace this challenge and transition from merely collecting data to using it to personalize healthcare.