The Missing Pieces in Healthcare

Much like a puzzle, healthcare is incomplete without continuous patient data. In this month's newsletter, I’ll explore how empowering people to share their health data can help bridge these gaps and transform the healthcare system. By connecting the dots, before diagnosis, during treatment, and beyond, collaboratively we can work toward a more holistic and patient centred approach to healthcare that truly serves every individual’s unique needs.

Bridging Gaps with Patient Empowerment Through Data Sharing

Healthcare has made incredible progress, bringing us lifesaving treatments, cutting edge technology, and longer life expectancy. Yet, for all these advances, something continues to be overlooked or disregarded. We continue to operate in a system that often fails to see the full picture of a persons’ health. One of the most significant challenges in modern healthcare is the fragmented and incomplete data that clinicians rely on to make decisions. While healthcare professionals collect clinical data during a persons’ visit, this information is often siloed and fails to provide a comprehensive picture of a persons’ health. Just like a puzzle, healthcare remains incomplete without continuous, real-time patient data.

?1. The Gap Before Diagnosis

One of the most significant "missing pieces" in healthcare is in disease manifestation initially and post treatment outcomes as experienced by people of all diverse health profiles. Not everyone will experience changes in their health before receiving a formal diagnosis, with a large percentage asymptomatic with vital measurements progressing to a point outside the normal range before being fully affected by a condition. However, there is currently no system in place to track or collect relevant health data during this disease manifestation, leading to a lack of insight into potential issues and missed opportunities for timely intervention.

Consider a person who is starting to present an increase in blood pressure when symptoms are not evident. Without tracking blood pressure regularly, a early diagnosis could be delayed, potentially leading to further complications that have a major impact on that individuals life such as a stroke or a heart attack.

Empowering people today to share retrospective data, if they have access to wearable or home health device data, at the point of diagnosis for consolidation and query could present invaluable insights as to disease manifestation. This knowledge could inform other people on a similar trajectory as to the likelihood of disease manifestation and could inform earlier intervention. There is so much data captured in apps, wearables and other digital health technologies that could be shared to bridge the knowledge gap of disease manifestation. Furthermore at point of diagnosis and treatment commencement, accessing continuous data from these same technologies could increase our knowledge across all health profiles as to outcomes and ill effects of treatment across profiles of people who would not readily be assessed or included in clinical trials.

2. The Lack of Continuous Data

Post diagnosis and the introduction of treatment, we still largely rely on sporadic data points, often gathered only during HCP appointments or emergency visits. However, health is dynamic and constantly changing, so a snapshot taken once a year or during a doctor’s appointment or hospital visit does not provide an accurate or complete view of a persons’ health trajectory.

What happens in between doctor visits? How do we monitor the progression of a condition or the impact of treatments on overall health? With continuous tracking from people compromised with a condition, relevant information on a treatment and outcome can be presented enabling healthcare providers to see a complete picture of progression between visits and allowing a persons’ true health status to be assessed and managed efficiently.

By encouraging people to actively track and share their health data, such as symptoms, mood, medications, sleep quality, and medication adherence, healthcare providers can obtain a continuous, holistic view of their wellbeing. This ongoing data collection empowers clinicians to make more informed decisions, adjust treatment plans faster, and respond to changes in a persons’ health proactively.

Continuous data sharing also makes it easier to detect early signs of deterioration or improvement, which is crucial for managing chronic diseases. Not all treatments are effective for every individual. When a treatment is initiated, how can a doctor determine its limited impact? If a treatment isn't working, particularly in cases where it's crucial to restore vital measurements to a normal range, how can this be identified?

The tremendous value lies in the knowledge gained from assessing populations and communities of people after treatment through people generated health data. Clinical trials typically restrict participation to specific profiles, meaning not everyone with a condition is guaranteed a result. Even individuals who match trial profiles cannot be assured of having the same experience. This raises the question as to outcomes and guarantees. If we aren’t guaranteed an outcome, we need to ensure we know if we are getting one or not.

Imagine having the ability to assess treatment outcomes in detail, specifying exactly what the result was. For example, it could involve symptom control, but with clear identification of which specific symptoms or symptom groups were impacted. Alternatively, it could involve vital measurements returning to a normal range, but with precise details on the percentage improvement from specific doses tailored to individual profiles, based on our current understanding of how to define these profiles.

3. The Influence of Comorbidities

The influence of comorbidities and concomitant treatments when a person has multiple chronic conditions that influence one another, are another critical piece missing from many outcomes generated in trials. According to statistics, approximately 66% of people, in the UK, with a chronic condition suffer from one or more comorbidities. As these people are excluded from the gold standard of clinical trials, evidence is limited as to treatments and outcomes. As a result, healthcare providers cannot guarantee outcomes for these people, leading to the need for more evidence on diverse communities if treatment strategies are to be offered that will optimise treatment outcomes for these populations.

A more comprehensive measurement of treatment outcomes that is contributed to from distinct profiles that includes information on comorbidities, medication regimens, and lifestyle factors would provide healthcare providers with a deeper understanding on how best to treat. This information allows clinicians to create more personalised treatment plans and account for how multiple conditions and medications may affect each other, leading to better health outcomes.

"A stitch in time saves nine"

Empowering Patients to Bridge the Gaps

One of the most powerful ways to address these missing pieces in healthcare is by empowering patients. When people are encouraged to actively participate in their healthcare and share their health data, they contribute valuable insights that go beyond what clinicians can gather during formal appointments.

Patients can utilise wearables, such as smartwatches, fitness trackers and smart rings, health apps like PeopleWith, and other monitoring tools, such as blood pressure monitors, smart weight scales, pulse oximeters and continuous glucose monitors, to offer real-time insights into their health. For example, devices like smartwatches and fitness trackers can monitor a range of factors, including heart rate, sleep patterns, and physical activity, delivering ongoing data that enables clinicians to gain a more detailed understanding of a patient's condition.

This shift from a passive to an active role for patients means that healthcare professionals can make more informed decisions and tailor treatments more effectively to each persons’ unique health profile. It also allows clinicians to track changes in a persons’ condition over time and adjust care plans accordingly, improving the quality and precision of healthcare delivery.

The Value of Comprehensive Data

The more data healthcare providers have, the better equipped they are to make informed decisions. By collecting continuous and comprehensive patient data before, during, and after diagnosis, clinicians gain a more complete understanding of a persons’ health. This has the potential to lead to better diagnoses earlier, more effective treatments, and improved patient outcomes.

“The power to transform healthcare doesn’t lie solely in the hands of doctors or hospitals, it lies in the hands of people. When individuals actively participate in their health journey, they provide insights that no medical test or hospital visit could ever capture”.        

Here are a few key ways that comprehensive data can enhance healthcare:

1.?Apply Interventions Sooner

Early identification of health issues allows for early intervention. The earlier a disease is understood, the sooner treatment can begin, which often leads to better outcomes. This approach aligns with the adage, "A stitch in time saves nine." By filling the gap in data before a diagnosis, clinicians can intervene sooner, potentially preventing diseases from progressing to more severe stages.

2.?Tailor Treatment Plans

Every person is unique, and treatments that work for one person may not work for another. Comprehensive data, including information about comorbidities, lifestyle, and previous treatments, allows healthcare providers to tailor care to each individual. A customised treatment plan that addresses a persons’ specific health needs is more likely to be effective and result in better outcomes.

3.?Track and Monitor Progress

Ongoing data collection enables healthcare providers to track the progress of treatments over time. This continuous monitoring can help clinicians assess whether the treatment plan is working or if adjustments need to be made. As patient health evolves, so too should their care plans.

Addressing Limitations in Healthcare

The absence of continuous, comprehensive data presents significant limitations, including:

• Early Identification of Patients at Risk: Without regular monitoring, it’s challenging to identify people at risk for severe health issues before they become critical.
• Understanding Treatment Efficacy: Incomplete data makes it difficult to determine which treatments are working best for individual people, which hampers the optimisation of care.
• Tracking Health Outside Clinical Settings: Many health behaviours and conditions unfold outside of clinical appointments. Without patient-reported data, healthcare providers may miss crucial information that affects a patient's health.

By empowering people to contribute more data, we can overcome these limitations, enabling healthcare providers to make more responsive, personalised decisions that lead to better health outcomes.

“The real value lies in gaining a deeper understanding of a persons’ condition, which allows for more informed decisions regarding future research and product positioning. This ensures that individuals receive the right medication at the right time and in the right context along their journey, despite each person having a unique profile”.        

A New Era in Healthcare

The missing pieces in healthcare aren’t just about gaps in data, they also concern how we interact with and support people throughout their entire health journey. By empowering individuals to share their health data, we create a more complete picture of their conditions, which leads to better diagnoses, personalised treatments, and improved outcomes.

One thing is certain, true progress is only possible through collaboration and a patient-first approach. By embracing innovation, exchanging insights, and deepening our understanding of patient needs, we can shape a future that improves health outcomes for all. Together, let's complete the puzzle and continue to push the limits of what’s possible in healthcare. Let’s put patients at the core of healthcare, with their data driving better decisions, earlier interventions, and more personalised treatments. By closing these gaps, we can transform healthcare delivery, making it more responsive, comprehensive, and effective in meeting the unique needs of each individual.

Thanks for reading.

Best regards,

Mark

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