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The Role of Human Informatics in Chronic Disease Management

The Role of Human Informatics in Chronic Disease Management


The Role of Human Informatics in Chronic Disease Management:

  • Explain how human informatics can be used to improve chronic disease management.
  • Focus on how data collection, analysis, and visualization can contribute to better care coordination.
    • Utilizing patient-generated data (PGD) from wearable devices to track health metrics and identify potential issues.
    • Applying data analytics to personalize treatment plans and predict potential complications.
    • Using data visualization tools to create comprehensive patient profiles for informed decision-making.
  • Discuss the ethical considerations involved in using patient data for chronic disease management.



  1. Introduction

Today, chronic diseases represent a major global health burden. The WHO has estimated that 60% of all deaths worldwide will be the result of chronic diseases by 2020. The treatment of such diseases is increasingly dependent upon the active involvement of the patient, with patient-centered healthcare and a focus on prevention being at the core of modern-day healthcare practice. Patient-centered healthcare is an approach to planning and delivering healthcare that is grounded on mutually beneficial relationships among patients, families, and healthcare practitioners. This represents an attempt to shift the general focus of healthcare practice from the traditional approach towards an approach where the patient is an informed and empowered decision-maker in their care. This is particularly relevant to developmental disorders such as Down’s syndrome and cerebral palsy, where medical interventions cannot increase functioning, and preventive management is critical. A great example of the focus on prevention is the American Down’s Syndrome Preventive Healthcare Guidelines. This is an incredibly detailed guideline that is aimed at preventing further decline of function resulting from complications of associated health problems, such as hypothyroidism or leukemia. This guideline assumes that regular monitoring and treatment of associated conditions will prevent decline in function. An informed patient or, in the case of childhood disorders, the informed parents, can regularly monitor these conditions, and so it can be said that current and future methods of chronic disease management will rely on the availability of health information to the informed patient.

1.1. Overview of chronic disease management

Summary Chronic diseases are currently the dominant form of health problem in the world. A non-communicable condition is defined as lasting for 3 months or more and generally cannot be prevented by a vaccine or rapidly cured. Chronic diseases can have a major impact on an individual by not only being a major cause of premature death but by affecting the person’s quality of life as they can be disabling, which can result in an inability to perform an activity, thus affecting the quality of life. Activity limitation can be common for people with chronic diseases and can have potential effects on the participation of work and, in some cases, be a reason for cessation of work. The level of severity of a chronic disease can vary from mild to severe and generally people spend a lot of time attempting to manage the disease. The management of chronic diseases will often involve attempts to prevent the condition from worsening, potentially resulting in complications which can lead to an urgent need for medical care. Symptoms or the condition itself can be the cause of a bio-psychosocial state that can be distressing for affected individuals (Murray and Lopez et al, 1996). This ongoing management of the chronic conditions is what would be classified as a complex continuing care case, where an individual would have a health issue that is non-curable and would require long-term assistance. This can vary from attempting to repair an activity limitation state to preventing major complications of the diseases. Often, the more complex cases will require an interprofessional team and can involve monitoring and changes to a person’s health regimen to determine what is the most effective form of long-term management of the condition, in turn attempting to prevent further progression of the disease. This may involve the person changing various aspects of their life in an attempt to find an approach to improve their health (Adams et al, 963). This approach to the assessment of the effectiveness of self-management of chronic diseases is known as the clinical assessment phase. This process must be done in a safe manner with minimum harm to the patient. All of the phases of continually attempting to improve a person’s health status with chronic disease are what is attempted to change the natural history of a disease into a more favorable outcome. This type of care is what is attempting to perform improvement illness care on the illness level, as opposed to acute care which generally aims to perform a cure or prevention of a disease.

1.2. Importance of human informatics

Another reason human informatics is vital to chronic disease management is because of the patient centered care and disease management philosophy of today’s health care organizations. Patient centered care is care designed to involve the patient in the process of medical treatment. It is a highly individualized care system with the goal of changing the patient’s health behavior. This is consistent with the coping process described earlier and is something that is best guided by information. The sinew of patient centered care is the frequent interaction between provider and patient aimed at making the best health decision for the patient. This is an interaction rich in information and the failure to provide the correct information at the right time can lead to a decrease in functional health for the patient and/or wasted time and money for the health care provider. Disease management is a more recent philosophy within the healthcare system. It is less a scheme or a distinct program and more an approach to how health care should be delivered to persons with chronic health issues. The aim of disease management is to increase the general health of those with chronic disease so as to avoid any decline in health and functional ability. This is to be attained through treatment and various health interventions. The first step is to understand the nature of the specific disease and what are the best interventions to improve health. Disease management is highly dependent on clinical research and it is there where evidence based medicine is often cited as a tool for making the best health decisions. Evidence based medicine is the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients.

The importance of human informatics can be pegged to the basic need of a chronic disease sufferer to cope with their disease. Coping is an interactive process involving the person and their environment. Information helps the person modify their environment and/or their interaction with that environment in a manner that better suits their needs. In the case of the chronic disease sufferer, they are seeking to cope with their disease in a manner that allows them to attain their level of desired function whilst minimizing the effects of the disease. Usually they are needing to adapt to a new set of bodily limitations and/or changes to their social and physical environment. This kind of coping process is highly dependent on information and a lack of appropriate information can lead to self-mismanagement and a decline in health. An acute care patient is seeking a fast and effective cure to their ailment. The treatment decision process for acute care is less dependent on information. Fast forward to today’s world of an exploding chronic disease population where 1 in 3 people in the US are dealing with one or more chronic health issues. The decisions chronic disease sufferers make regarding their health and treatment are more complex and involve weighing the costs and benefits of various outcomes over an extended time period.

There are tremendous human and financial costs that result from the mismanagement of chronic diseases. In the past twenty years, the information age has presented us with a variety of tools that can be employed to better manage chronic disease. These “information age” tools are varied and highly sophisticated ranging from telecommunications and the internet to an array of new diagnostics using DNA/RNA and advanced imaging. The common thread with all of these tools is that they are information based. The rise of these information age tools in many ways mirrors the rise of human informatics. Essentially, human informatics is the science of how best to use information to improve human health.

  1. Data Collection in Chronic Disease Management

2.1. Utilizing patient-generated data (PGD)

2.2. Wearable devices for health metric tracking

2.3. Identifying potential issues through data collection

  1. Data Analysis in Chronic Disease Management

3.1. Data analytics for personalized treatment plans

3.2. Predicting potential complications through analysis

3.3. Benefits of data-driven decision-making

  1. Data Visualization in Chronic Disease Management

4.1. Importance of data visualization tools

4.2. Creating comprehensive patient profiles

4.3. Enhancing care coordination through visualization

  1. Ethical Considerations in Chronic Disease Management

5.1. Privacy and security of patient data

5.2. Informed consent for data usage

5.3. Ensuring data confidentiality and integrity

  1. Conclusion

The Role of Human Informatics in Chronic Disease Management

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