A Lifespan Approach: Why We Need Comprehensive Health Data from People

Hi everyone,

As I prepare this new edition of my monthly newsletter, I’d like to reflect on the key themes we've explored so far, each of which has been vital in shaping patient-centric healthcare and improving health outcomes for all.

Looking Back: Past Newsletters

Over my past 6 LinkedIn Newsletters, I’ve focused on key topics driving the transformation of healthcare towards a more patient-centric model.

May 2024 (Issue 1):

In my article, "Advancing Health Through Collaboration," I discuss the vital role of collaboration in healthcare among patients, healthcare professionals, and life science researchers. This collaborative approach is shaping the future of healthcare, ultimately improving patient outcomes and advancing global health efforts.

May 2024 (Issue 2):

In "Shaping the Future of Patient-Centric Healthcare," I highlight the crucial role of Real-World Data (RWD) in enhancing patient care. As CEO of PeopleWith?, I envision integrating data from wearables and home devices to offer earlier insights into condition progression and support proactive health interventions.

June 2024:

In my article, “Harnessing the Power of Clinical Data and Technology for Superior Patient Outcomes,” I demonstrated how digital health platforms are transforming patient care. Clinical data, once siloed, is now accessible and analysed at scale, leading to better decision-making and personalised treatment plans.

July 2024:

In my article, “Next-Generation Registries and the Rise of Home Health Data,” I explore the evolution of patient health data collection, focusing on the shift from traditional registries to next-generation registries powered by smart technologies. Traditional registries rely on fragmented data from clinical observations and manual entry, often lacking real-time insights.

August 2024:

In my August 2024 newsletter, “Building a Sustainable Future for Health Societies through Next-Generation Patient Registries,” I urge health societies and patient advocacy groups to adopt Next-Generation Patient Registries, as traditional registries are no longer satisfactory for modern healthcare needs. Next-Generation Patient Registries create clinical-grade datasets that enhance research, optimise treatments, and generate revenue for sustainability.

September 2024:

In "How Next-Generation Patient Registry Data is Changing the Game," I talk about how patient-generated data from wearables, apps, and digital tools is revolutionising healthcare. Unlike traditional registries focused on specific diseases, at a point in time when people’s health is compromised, Next-Generation Registries monitor health throughout a lifetime, allowing for early detection of issues and proactive interventions. I emphasise the importance of understanding one's "normal" health, and platforms like @PeopleWith are at the forefront of integrating patient data to improve healthcare outcomes through accessing deeper insights.

Understanding health as an evolving journey

While we've delved into the power of real-time health data in recent months, there's an even greater opportunity ahead: requiring comprehensive data collected from individuals over their entire lifespan, understanding health as an evolving journey.

True progress is only possible through collaboration and a patient-first approach

"Building a Complete Puzzle."

Imagine health data as individual jigsaw pieces, each representing vital aspects of a person's well-being. Right now, the pieces we have are limited to what is collected during clinical visits or through trials. But to fully understand a person's health, we need every piece, from daily habits to long-term trends, seamlessly fitting together to reveal the full picture.

Without those crucial pieces, healthcare providers and researchers are left guessing, unable to see the full image of a person’s health. By capturing health data across a person's entire lifespan and integrating it with clinical insights, we can finally piece together the whole jigsaw puzzle. This allows for personalised treatments, early interventions, and more accurate health outcomes.

Just like a jigsaw puzzle can't be completed with missing pieces, healthcare can't be truly patient-centred without comprehensive, continuous data from individuals.

My Next Six Newsletters

Moving forward, I’ll be focusing on the importance of collecting health data across the lifespan. Over the next six newsletters, I’ll explore the reality of why we need more health data from individuals to improve healthcare for everyone. Here’s a glimpse of what’s coming:

The Limitations of Clinical Trials – We’ll look at how the current approach to clinical trials often leaves out critical data from people’s daily lives, limiting our understanding of treatment effectiveness.

Why People Need to Start Looking at Health Outcomes – Understanding how health outcomes are defined and measured is essential, and we’ll dive into why it’s crucial for individuals to play an active role in tracking their own health progress.

The Reality of Treatment Outcomes – Are people actually getting the results they expect from treatments? We’ll examine how gathering data from people can help determine whether a treatment is truly effective.

The Missing Pieces in Healthcare – Much like a puzzle, healthcare is incomplete without continuous patient data. This newsletter will focus on the gaps in the current system and how they can be filled by empowering individuals to share their data.

Real-Time Health Data: The Key to Proactive Care – We’ll explore how gathering data in real time can enable earlier interventions and how this shift can reduce hospitalisations and improve quality of life.

A Collaborative Approach to Data Sharing – To build a patient-centred healthcare system, we need collaboration between patients, healthcare providers, and researchers. This newsletter will outline how we need to break down the barriers to data sharing to create a more connected healthcare landscape.

One thing remains certain, true progress is only possible through collaboration and a patient-first approach. By embracing innovation, shared insights, and a deeper understanding of patient needs, we can shape a future where health outcomes are improved for all. Together, let’s complete that jigsaw puzzle and continue to push boundaries and redefine what’s possible in healthcare.

Thank you for your continued support and feedback and I look forward to sharing these insights with you in the coming months. Let’s keep the conversation going: share your thoughts, spread the word by sharing this newsletter, and join me as we harness the power of health data to shape a brighter, healthier future for everyone.

Best regards,

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. If you wish to hear more about ‘Why We Need Comprehensive Health Data,’ please feel free to reach out to me directly by DM.