How Next-Generation Patient Registry Data is Changing the Game: Consolidation of Current and Future Patient-Generated Data
Consolidation of Current and Future Patient-Generated Data

How Next-Generation Patient Registry Data is Changing the Game: Consolidation of Current and Future Patient-Generated Data

The early bird catches the worm. The early bird is the person who knows their own normal. What is yours?        

In today’s fast-paced world, healthcare is being transformed by data, and knowing your normal is a crucial step in empowering individuals to take charge of their health. What used to be a by-product of medical care is now a powerful resource that can shape how we approach patient health, research, and broader healthcare systems. With more and more people using wearables, apps, and other digital tools to track their health, the challenge now is figuring out how to bring all this information together in a way that makes a real difference. Enter next-generation patient registries platforms, a game-changer for healthcare.

More than just tracking diseases, Next-Generation Patient Registries are now key to monitoring health over a lifetime, capturing data not only when illness strikes but also when people are well. The early detection of declining vital signs enables earlier interventions, saving lives and reducing the cost of healthcare by pre-empting severe conditions. By aggregating data from wearable devices, apps, and other health platforms, we create a clearer picture of normal health variations across diverse communities. This can allow us to intervene long before symptoms present, offering an entirely proactive approach to healthcare management.

The Traditional Approach In the past, patient registries have been vital for healthcare systems. They were set up to collect information about specific diseases or treatments, helping doctors and researchers understand what works and what doesn't. However, these systems often required a lot of time and effort, relying heavily on doctors for input and leaving out much of the day-to-day information patients could provide about their own health. They miss vital pieces of information that uncover deeper insights. The Burden on healthcare professionals is testament to this.


Offering a real-time picture of a person's health

The Shift to Next-Generation Patient-Generated Platforms

Things are different now. With wearable devices, mobile health apps, and digital platforms, we have a constant flow of information from patients themselves. Devices that track heart rate, sleep, and activity, along with apps that monitor mood or medication use, offer a real-time picture of a person's health. This data can provide insights that were previously unimaginable.

But there's a catch. All this data often exists in silos, scattered across different apps and platforms. Without a way to bring it all together, we miss out on the full potential of what this information can do to improve health outcomes.

Overcoming the Challenges

Using patient-generated data isn’t without hurdles. First, we need to make sure the data is accurate, reliable, and relevant. While we’re gathering more information than ever, not all of it is helpful in a clinical setting. For example, while a step count from a fitness tracker might be useful, it may not be as critical as monitoring blood pressure or glucose levels in a patient with specific health conditions.

Next-Generation Patient Registries need to filter and prioritise the most useful data—information that can lead to better healthcare decisions. Another challenge is that health data comes from many different devices and systems, each with its own format. To get the full benefit, we need to find ways to integrate this data into a single, standardised format that healthcare providers can easily access and use.

The Opportunity

Despite these challenges, the potential of Next-Generation Patient Registries are enormous. By gathering real-world data directly from patients, healthcare can become more personalised. Continuous tracking of symptoms and behaviours allows for earlier detection of health issues, better management of chronic conditions, and more tailored treatment plans. This can lead to better health outcomes and lower costs by understanding disease manifestations that are so diverse for the variant patient profile.

How Next-Generation Patient Registries Benefit Us All

By aggregating data from multiple sources, Next-Generation Patient Registries can provide a more comprehensive understanding of patient diagnoses, treatments, and outcomes.

Some key features of Next-Generation Patient Registries include:

  • Data standardisation: Using standardised data formats and terminologies to ensure that data is consistent across different systems and organisations.
  • Anonymisation and encryption: Using advanced privacy and security measures to protect patient data, ensuring that it remains confidential and secure.
  • Data aggregation: Aggregating data from multiple sources, providing a larger and more diverse patient population than traditional patient registries.

The benefits are numerous, including:

  • Empowering Patients: These new systems put patients at the centre of their care. When people can track and share their health data in real-time, they feel more engaged and empowered, which can lead to better health outcomes.
  • Better Clinical Decisions: With access to real-time data, doctors can make more informed decisions. Whether it’s adjusting medication or spotting trends, having a complete picture of a patients health allows for more personalised care.
  • Advancing Research and Public Health: Large-scale data from patients can help identify trends, fill gaps in care, and improve understanding of disease progression. This data complements traditional research, speeding up the development of better treatments.
  • Reducing Healthcare Costs: By allowing for early interventions and better management of chronic conditions, next-gen registries can reduce the need for HCP visits and treatments.

Next-Generation Patient Registries have the potential to transform healthcare by providing a more comprehensive understanding of patient data, improving patient outcomes, and accelerating the development of new treatments.

Comparison of Traditional vs. Next-Generation Patient Registries

Comparing traditional patient registries with next-generation patient registries. Highlighting the differences in data source, input methods, types of data, patient involvement, integration, impact on care, and cost implications.

What’s normal’?

Knowing your own "normal" health (not just during illness but also when you’re well) is key to empowering individuals to manage their well-being. People will see the values created by treatment and inspire them to continue taking medications as scheduled. Early detection of declining health signs enables timely interventions, saving lives and reducing healthcare costs. By aggregating data, we can create a clearer picture of health trends across diverse populations, allowing proactive healthcare management. This approach improves outcomes, empowers patients, and emphasises acting on health insights earlier rather than waiting for illness.

Leading the Way

Companies, such as PeopleWith, have harnessed the power of Next-Generation Patient Registries to help health societies make the most of patient-generated data. The platform makes it easy for patients to track, record, and share their health data with healthcare providers, ensuring that this information is fully integrated into the broader healthcare system. With a focus on interoperability and meaningful insights, PeopleWith aim to help health societies improve outcomes, reduce costs, and build more resilient healthcare systems.

As healthcare continues to evolve, companies like PeopleWith are dedicated to closing the gap between patient data and actionable insights, empowering both individuals and healthcare providers. The future of healthcare is data-driven, and by embracing the potential of platforms, you will access next-generation patient-generated data, to create a healthier, more informed world for everyone.

Mark

I hope you find this newsletter informative! Join the conversation! Comment with your thoughts, share this newsletter with your colleagues or 'like' to show your support. 'Follow' me on LinkedIn or 'subscribe' to my ‘Healthcare Collaboration’ Newsletter, or if you wish to hear more about the power of Next-Generation Patient Registries, please feel free to reach out to me directly by DM.

Next-generation patient registries are poised to transform clinical trials by providing real-time, patient-generated data that enhances participant recruitment and retention. Integrating data from wearables and health apps offers deeper insights into patient experiences and outcomes, allowing for more tailored trial designs.? This continuous monitoring can lead to earlier detection of adverse events and a better understanding of treatment effects over time. What changes do you anticipate in clinical trial methodologies with this data-driven approach?

Stefan Turnwald

Founder, Speaker, Customer Engagement Enthusiast

2 个月

Very informative

Paddy Devlin

Proprietor at Devlin Associates

2 个月

Very interesting article, access and use to all that readily available raw data must be of real value to health professionals as they seek ways to optimise patient health & associated services.

James Rose

Head of Digital Projects and Transformation, Solutions Architect | SaaS, Salesforce PM, ERP & CRM Specialist, Shopify Plus, Ecommerce, and Digital Creation

2 个月

excellent article, highlights the pace at which this digital transition is moving ?? Dont get left behind people on old legacy systems - FUTURE-PROOF, NOW !

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