Health and Healthcare Systems

Why integrated data is critical to personalizing healthcare

Doctor Holding Cell Phone. data

Data silos in healthcare create a fragmented landscape of vital health information, blocking more personalized healthcare Image: National Cancer Institute/Unsplash

Gloria Seibert
Founder and Chief Executive Officer, Temedica
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Health and Healthcare

This article is part of: Centre for Health and Healthcare
  • Personalized healthcare thrives on a comprehensive understanding of the patient, which is often compromised by the fragmentation of health data.
  • To overcome these data silos, a system that allows for seamless data sharing among healthcare stakeholders is vital, while patients must be empowered with control over their data.
  • Integration of data from a diverse array of sources is also needed, from patient-reported experiences on social media or patient companion apps to detailed clinical data.

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.

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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.

A collaborative data system for 360-degree patient understanding

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.

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The challenge of data silos in healthcare

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:

  • Establishing an interoperable system: fostering a system that enables seamless data sharing among healthcare stakeholders (including healthcare professionals, patients, researchers, life sciences entities, medtechs, payers and regulators) is pivotal. Enhanced interoperability opens up opportunities for more nuanced and tailored patient care. Integrating insights from various perspectives not only enriches health outcomes but also steers healthcare towards a more patient-centric model.
  • Incentivizing the participation of stakeholders: establishing a win-win scenario for all parties in the healthcare system is equally critical. Developing incentives for stakeholders – be they financial, time-saving or reputation-building – is crucial to this approach. Ensuring that each group perceives clear benefits from their participation drives collaboration and contributes to the shared objective of personalizing healthcare.
  • Implementing robust data governance frameworks: developing data governance frameworks that protect patient privacy and ensure ethical data use is essential. These frameworks must balance the need for data security with the benefits of data sharing, promoting responsible data usage and building trust across the healthcare sector.
  • Empowering patients in health data management: informing patients and empowering them with control over their data reinforces their trust in the healthcare system. This active participation not only enriches the overall dataset but also ensures that healthcare solutions are more accurately aligned with individual needs and preferences, truly reflecting each patient's unique health experience.

Overcoming blind spots in healthcare data

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.

Patient conversations on social media
Patient conversations on social media Image: Temedica GmbH
Insurance claims data
Insurance claims data Image: Temedica GmbH

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.

Paths to personalized healthcare

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.

Image: Temedica GmbH

A unified vision for future healthcare

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.

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The views expressed in this article are those of the author alone and not the World Economic Forum.

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Health and Healthcare SystemsEmerging Technologies
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