Health Information Technology to enable patient-centered management of Chronic Kidney Disease and diabetes
Introduction
Patients taking ownership of their Chronic Kidney Disease (CKD) and Diabetes (DM) can allow for a cost-effective method of managing both progression of CKD and the overall maintenance of patient well-being. However, as with medical practitioners, we need to adapt and use the advances made in Information Technology to deliver a platform to patients through which they can share personalized healthcare information, enabling them to take ownership of their CKD and DM. This platform should consist of automated information, advice, and guidance about the progress of their kidney disease and the associated organ-specific complications. Information technology (IT) advances enable this redesign of healthcare processes based on using and integrating electronic communication at all levels. New communication technologies can now support transitioning from institution-centric to patient-centric applications.
The use of mobile IT devices such as smartphones in health care is increasing. For health care practitioners, using mobile IT can bring additional resources to the point of care and change the location of that point of care. This application can focus on serving the user's needs by providing widespread access to relevant information and remote data capture, thus eliminating the need for the user to be physically linked to a network or restricted to a specific geographic location.
HealthCart mobile phone application can deliver patient-focused information and advice, as demonstrated here. With user-friendly displays, patients can share their healthcare information with the appropriate advice delivered parallel to their disease. With chronic kidney disease being a number-driven chronic disease, this application will be able to make clear-cut decisions individualized for each patient, allowing them to take ownership of their chronic kidney disease.
- Patients taking Ownership of Chronic Kidney Disease and Diabetes management
- The use of modern IT applications to bring efficiencies to the delivery of renal and diabetes care
- Bringing home the care of renal disease to the hands of clinicians and patients
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The concepts
From a medical perspective, the underlying concept of Renal and Diabetes Reality (Reality Apps) revolves around a fundamental principle: recognizing that the interactions between patients and healthcare providers at both the primary and secondary care levels are intricate and multifaceted. In this evolving healthcare model, the aim is to transform patients and the general public into active and collaborative participants in the management of their chronic diseases, specifically renal and diabetes conditions.
Traditionally, the secondary care delivery model has been characterized by its high cost and a heavy reliance on relatively limited interactions between healthcare practitioners and patients. These interactions often occur primarily during consultation periods. However, the application of health informatics and modern device platforms offers the potential to reshape the landscape of healthcare delivery. This transformation involves shifting the locus of service delivery from the healthcare facility to the patient's own home.
By facilitating healthcare services within the patient's home environment, this approach empowers individuals to take a proactive role in managing their chronic diseases, contrasting with the prevailing reactive model of care. The current reactive model tends to focus on addressing acute issues during brief consultations, often neglecting the comprehensive, ongoing management required for chronic diseases like renal and diabetes conditions.
Furthermore, this paradigm shift emphasizes the importance of patient ownership of their disease. It represents the final piece in the intricate puzzle of this multi-faceted healthcare interface. When patients actively engage in understanding and managing their chronic conditions, it not only benefits their own well-being but also contributes to a broader awareness of chronic diseases within the public sphere. This increased awareness is especially crucial in identifying and addressing those at risk of developing chronic kidney disease (CKD) and other related health issues.
In summary, Renal and Diabetes Reality embodies a forward-thinking approach that acknowledges the complexities of patient-doctor interactions in the context of chronic diseases. By leveraging health informatics and modern technology, it seeks to empower patients, redefine the location of healthcare services, and foster a sense of ownership over one's health. Ultimately, this approach not only enhances individual patient care but also promotes greater awareness and prevention of chronic diseases in the wider community.
- Public Awareness through Public and Primary Care interaction
- Screening of high-risk patients in primary care through the primary care interface
- Shared Care protocols from secondary care providers and specialists
- Patient ownership through mobile applications in public health
- Information technologies to bring these aspects together within one Concept
Concepts of chronic disease management (CDM)
In the Public Sector, Chronic disease management (CDM): -all about AWARENESS as the primary interaction between potential patients and the primary healthcare provider. Those at risk of CKD and DM are encouraged to contact their GP in primary care for the SCREENING process that includes blood tests and urine analysis. Those patients identified with probable CKD or DM are referred to the Secondary care setting, where they get to be seen by Consultant Physicians. The Secondary interface generates SHARED CARE PLANS communicated to primary care providers and patients. Enabling patient OWNERSHIP of disease through IT channels allows patients to complete the cycle of CDM and awareness in Primary care.
.png "Cycle of CKD management within primary-secondary care interface")
In the Public Sector, CKD-all about AWARENESS as the primary interaction between potential patients and the primary health care provider.
Those at risk of CKD are encouraged to contact their GP in primary care for the SCREENING process, including blood tests and urine analysis.
Those patients identified with probable CKD are referred to the Secondary care setting, where they get to be seen by Renal Specialists.
The Secondary interface generates SHARED CARE PLANS communicated to primary care providers and patients.
Enabling patient OWNERSHIP of disease through IT channels allows patients to complete the cycle of CKD management and awareness in Primary care.
Clinical integration and sharing of information
Patient Ownership of Chronic Disease Management
In many hospital IT systems, patient data is typically stored in fragmented, chronological order. Previous data models have primarily focused on capturing episodic patient encounters as discrete healthcare transactions, often failing to provide a comprehensive view of an individual's entire healthcare journey or ensuring seamless continuity of care. In the modern healthcare landscape, healthcare practitioners are now faced with the challenging task of integrating vast volumes of data scattered across various platforms into a clinically meaningful and coherent format.
The RENAL and DIABETES REALITY software serves as a transformative solution in this regard. It systematically reorganizes and auto-populates data into user-friendly clinical snapshots, facilitating rapid and informed decision-making at the point of care. These clinical snapshots enable what we refer to as "active surveillance," empowering healthcare providers to monitor patient trends and key performance indicators (KPIs). They have become central to patient management, particularly in secondary care settings, where specialized interventions are often required.
However, this data-driven approach has primarily been advantageous for healthcare providers, offering them valuable insights into patient care. To extend the benefits of this approach to patients themselves, a smartphone application, known as HealthCart, has been developed. This innovative application leverages the same RENALREALITY database to generate personalized clinical snapshots for patients. These snapshots not only offer patients a comprehensive view of their health information but also enable them to actively participate in clinical decision-making.
By granting patients access to these snapshots and the associated healthcare data, this approach fosters a sense of ownership over their chronic disease management. Patients are no longer passive recipients of healthcare services but active participants in their own well-being. They can engage with their healthcare providers on a more informed and collaborative level, resulting in a more patient-centered and empowered approach to healthcare.
(Refer to Diagram 2 - Flow of Health Information - Highlighted in Red: Smartphone App HealthCart for visualization of this patient-centric approach.)
The RENAL and DIABETES REALITY software serves as a transformative solution in this regard. It systematically reorganizes and auto-populates data into user-friendly clinical snapshots, facilitating rapid and informed decision-making at the point of care. These clinical snapshots enable what we refer to as "active surveillance," empowering healthcare providers to monitor patient trends and key performance indicators (KPIs). They have become central to patient management, particularly in secondary care settings, where specialized interventions are often required.
However, this data-driven approach has primarily been advantageous for healthcare providers, offering them valuable insights into patient care. To extend the benefits of this approach to patients themselves, a smartphone application, known as HealthCart, has been developed. This innovative application leverages the same RENALREALITY database to generate personalized clinical snapshots for patients. These snapshots not only offer patients a comprehensive view of their health information but also enable them to actively participate in clinical decision-making.
By granting patients access to these snapshots and the associated healthcare data, this approach fosters a sense of ownership over their chronic disease management. Patients are no longer passive recipients of healthcare services but active participants in their own well-being. They can engage with their healthcare providers on a more informed and collaborative level, resulting in a more patient-centered and empowered approach to healthcare.
(Refer to Diagram 2 - Flow of Health Information - Highlighted in Red: Smartphone App HealthCart for visualization of this patient-centric approach.)
HealthCart Smartphone application
This concept of ownership consists of 2 components: sharing information and actively participating in clinical decision-making through well-designed patient pathways – tailor-made for each patient in the context of the patient’s own set of clinical data.
The use of mobile IT devices such as smartphones in health care is increasing. For health care practitioners, using mobile IT can bring additional resources to the point of care and change the location of that point of care. This application can focus on serving the user's needs by providing widespread access to relevant information and remote data capture, thus eliminating the need for the user to be physically linked to a network or restricted to a specific geographic location. HealthCart smartphone application can deliver patient-focused information and advice, as demonstrated here. With user-friendly displays, patients can share their healthcare information with the appropriate advice delivered parallel to their disease. With chronic kidney disease being a number-driven chronic disease, this application will be able to make clear-cut decisions individualized for each patient, allowing them to take ownership of their chronic kidney disease.
Can it be replicated regionally and nationally?
RENAL and DIABETES REALITY (RdR) represents an innovative web-based database that functions as a pivotal point for intercepting and consolidating hospital data. In our healthcare network spanning the central Midlands region, Éclair serves as the standardized hospital storage system for blood test results. Given that Chronic Kidney Disease (CKD) management heavily relies on monitoring blood test results, the implementation of RENALREALITY is poised to bring about significant advancements in patient care.
One of the notable outcomes of deploying RENALREALITY is its synergy with the smartphone application HealthCart, which is tailored to cater to the specific needs of patients within our region. As various District Health Boards (DHBs) also adopt RENALREALITY as their "intercept" for healthcare data, it sets the stage for the expansion of HealthCart's regional availability. What's more, this synergy extends beyond regional boundaries, potentially allowing the HealthCart application to be utilized on a national scale.
By unifying renal data from multiple sources into a single, web-based repository facilitated by RENALREALITY, the smartphone application becomes a valuable tool accessible to healthcare providers and patients alike throughout the country. This centralized approach to renal data not only streamlines access but also paves the way for the analysis of regional and national trends in CKD management and patient outcomes.
In summary, RENAL REALITY, acting as a data intermediary, is positioned to enhance the efficiency and effectiveness of CKD management by leveraging standardized hospital data systems. This, in turn, enables the widespread use of the HealthCart smartphone application regionally and potentially nationally, with the ultimate aim of improving patient care and gaining valuable insights into renal healthcare trends at various levels of healthcare delivery.
Patient Participation
Previous research in the realm of mobile information technology devices, including Personal Digital Assistants (PDAs) or cellular phones, primarily focused on collecting data from patients with the primary aim of aiding healthcare professionals in their decision-making processes. While there have been some applications designed to offer real-time decision support to patients, the broader landscape has predominantly adhered to a traditional model of healthcare decision-making.
In this traditional model, patients are cast in the role of passive recipients of medical instructions rather than active participants in the management of their own health. The emphasis is on the healthcare provider as the central figure in decision-making, while patients are expected to follow prescribed interventions without substantial engagement in the decision-making process.
Unfortunately, this approach often assumes patient compliance with recommended interventions but lacks mechanisms for comprehensive follow-up to assess whether and how patients have adhered to these recommendations. This oversight means that the patient's perspective and involvement in their own care are frequently neglected, with limited opportunities for patients to express their preferences, concerns, or challenges in following through with prescribed treatments or lifestyle modifications.
The shift towards patient-centric applications acknowledges the need to rectify this imbalance. These patient-centric applications recognize patients as active participants in their healthcare journey rather than mere recipients of directives. They empower patients with information, tools, and resources to make informed decisions about their health.
In such patient-centric applications, the focus extends beyond merely delivering medical instructions; it encompasses shared decision-making, personalized care plans, and continuous engagement. These applications facilitate ongoing communication between patients and healthcare providers, allowing for the tracking of patient progress, addressing barriers to compliance, and making necessary adjustments to treatment plans based on the patient's input and experiences.
In essence, patient participation in healthcare decisions is pivotal for achieving patient-centered care. It ensures that the patient's voice is heard, preferences are considered, and healthcare is tailored to meet their unique needs and circumstances. This shift from a one-sided, directive approach to one of shared decision-making and active involvement empowers patients to take control of their health and fosters a more collaborative and effective healthcare ecosystem.
In this traditional model, patients are cast in the role of passive recipients of medical instructions rather than active participants in the management of their own health. The emphasis is on the healthcare provider as the central figure in decision-making, while patients are expected to follow prescribed interventions without substantial engagement in the decision-making process.
Unfortunately, this approach often assumes patient compliance with recommended interventions but lacks mechanisms for comprehensive follow-up to assess whether and how patients have adhered to these recommendations. This oversight means that the patient's perspective and involvement in their own care are frequently neglected, with limited opportunities for patients to express their preferences, concerns, or challenges in following through with prescribed treatments or lifestyle modifications.
The shift towards patient-centric applications acknowledges the need to rectify this imbalance. These patient-centric applications recognize patients as active participants in their healthcare journey rather than mere recipients of directives. They empower patients with information, tools, and resources to make informed decisions about their health.
In such patient-centric applications, the focus extends beyond merely delivering medical instructions; it encompasses shared decision-making, personalized care plans, and continuous engagement. These applications facilitate ongoing communication between patients and healthcare providers, allowing for the tracking of patient progress, addressing barriers to compliance, and making necessary adjustments to treatment plans based on the patient's input and experiences.
In essence, patient participation in healthcare decisions is pivotal for achieving patient-centered care. It ensures that the patient's voice is heard, preferences are considered, and healthcare is tailored to meet their unique needs and circumstances. This shift from a one-sided, directive approach to one of shared decision-making and active involvement empowers patients to take control of their health and fosters a more collaborative and effective healthcare ecosystem.
Other Mobile Health Promotion and Wellness applications
Patient-centered mobile healthcare applications have traditionally focused on specific medical conditions such as asthma, diabetes, and chronic obstructive pulmonary disease (COPD). These applications are tailored to provide support and resources for individuals managing these chronic health issues.
Concurrently, mobile health promotion and wellness applications have primarily concentrated on areas such as smoking cessation, dietary management, and vaccination reminders. It's noteworthy that while there is anecdotal evidence in popular media, there is a lack of comprehensive scientific literature on how mobile devices, including MP3 players and iPods, could potentially be harnessed to promote wellness activities and facilitate patient education.
As highlighted by Moen and Brennan, consumers often employ intricate strategies for managing their health information. These strategies encompass practices like storing health-related information in various locations within their households, recording data using different media formats, and organizing information based on perceived urgency and relevance. In the realm of mobile information technology, we now have the opportunity to incorporate these consumer-driven strategies into the design of healthcare management applications.
This means that mobile IT solutions for health management can take into account the diverse and adaptable ways in which individuals manage their health information. By offering user-friendly interfaces, flexible data storage options, and tools that align with consumers' established practices, these applications can enhance patient engagement, data accuracy, and overall health management.
In essence, this approach leverages the evolving landscape of mobile technology to provide patient-centered solutions that align with how individuals naturally handle their health information, thus promoting more effective healthcare management and engagement.
Concurrently, mobile health promotion and wellness applications have primarily concentrated on areas such as smoking cessation, dietary management, and vaccination reminders. It's noteworthy that while there is anecdotal evidence in popular media, there is a lack of comprehensive scientific literature on how mobile devices, including MP3 players and iPods, could potentially be harnessed to promote wellness activities and facilitate patient education.
As highlighted by Moen and Brennan, consumers often employ intricate strategies for managing their health information. These strategies encompass practices like storing health-related information in various locations within their households, recording data using different media formats, and organizing information based on perceived urgency and relevance. In the realm of mobile information technology, we now have the opportunity to incorporate these consumer-driven strategies into the design of healthcare management applications.
This means that mobile IT solutions for health management can take into account the diverse and adaptable ways in which individuals manage their health information. By offering user-friendly interfaces, flexible data storage options, and tools that align with consumers' established practices, these applications can enhance patient engagement, data accuracy, and overall health management.
In essence, this approach leverages the evolving landscape of mobile technology to provide patient-centered solutions that align with how individuals naturally handle their health information, thus promoting more effective healthcare management and engagement.
benefits of patient ownership of chronic diseases
- Summary of benefits The smartphone application, HealthCart, when integrated with the existing Reality APPS platform, offers a multitude of invaluable benefits:
- Enable Self-Management: HealthCart empowers patients to take ownership of their health by sharing clinical information in a manner that facilitates collaborative clinical decision-making. (Refer to diagram for illustration.)
- Tailored Disease Management: Patients receive personalized disease-specific advice and self-management protocols, precisely aligned with their condition and its progression.
- Risk Reduction: Particularly relevant for asymptomatic conditions like Chronic Kidney Disease (CKD) and Diabetes Mellitus (DM), HealthCart's ability to quantify disease staging and progress enables early awareness and contact with renal services. This proactive approach reduces the risk of disease progression and associated complications.
- Visual Awareness: Timelines and graphs serve as visual cues, preparing patients mentally for potential future interventions like dialysis. This reinforces the concept that proactive disease management can deter or slow down disease progression.
- Timely Interventions: HealthCart facilitates timely preventive actions and interventions, especially for critical parameters such as blood pressure, blood sugar levels, and urine proteinuria. The early provision of information empowers patients to actively participate in kidney care.
- Enhanced Referral Awareness: Push notifications alert both patients and primary care providers to the timeliness of referrals to secondary care. The combination of the smartphone application and patient ownership raises awareness of renal diseases within the broader population and promotes early screening in primary care.
- Reduction in Unnecessary Medical Interventions: By focusing on home-based care through the appropriate IT platform and virtual consultations, HealthCart minimizes the need for costly consultant reviews in secondary care. This approach also slows disease progression, reducing the need for expensive medical interventions, such as dialysis, resulting in significant cost savings.
- Optimizing the Health Workforce: Patients who take ownership of their disease become valuable contributors to the healthcare workforce. Health professionals can assess patients virtually through the REALITY application, efficiently managing both individual and group evaluations.
- Economic Sustainability: RENALREALITY and HealthCart demonstrate their ability to deliver sustainable and cost-effective services, a crucial consideration in light of the increasing demand for End-Stage Renal Disease (ESRD) treatments, particularly dialysis. This economic impact has already been proven in our District Health Board (DHB).
- Patient ownership in chronic disease management offers additional key benefits:
- Empowerment: Patients become active participants in their healthcare decisions, leading to a sense of empowerment and control over their health.
- Improved Self-Management: Patients are more likely to adhere to treatment plans, medications, and lifestyle changes, resulting in better disease management and health outcomes.
- Early Intervention: Patient ownership encourages proactive monitoring of health, leading to early detection of issues and timely intervention to prevent disease progression.
- Reduced Healthcare Costs: Engaged and informed patients are less likely to require costly medical interventions and hospitalizations, leading to potential cost savings.
- Enhanced Communication: Patient involvement fosters better communication between patients and healthcare providers, facilitating personalized care plans and treatment adjustments.
- Healthier Lifestyle Choices: Patients who take ownership of their health are more likely to make healthier lifestyle choices, such as improved diet and increased physical activity.
- Quality of Life: Active involvement in disease management can enhance patients' overall quality of life by reducing symptoms and complications.
- Population Health: Patient ownership can contribute to better population health outcomes by promoting preventive measures and early disease management.
- Reduced Healthcare Disparities: Patient-centered care can help address healthcare disparities by tailoring interventions to individual needs and preferences.
- Long-Term Sustainability: Engaged patients are more likely to sustain their efforts in managing chronic diseases, leading to long-term benefits for both individuals and healthcare systems.
Patient Participation
In the past, research focused on utilizing mobile IT devices like PDAs or cell phones primarily for data collection, aimed at aiding clinicians in their decision-making processes. Some applications also offered real-time decision support to patients.
However, despite the recent shift toward patient-centric healthcare applications, a majority of the applications discussed in the literature still adhere to the traditional model of healthcare decision-making, where patients are passive recipients of instructions rather than active participants in their care. These applications tend to assume patient compliance with prescribed interventions, with limited follow-up to assess adherence and effectiveness.
To enhance patient engagement and foster a sense of "ownership of CKD disease" among individuals with renal disease, the adoption of patient-directed self-management tools on mobile platforms is imperative. These tools can play a pivotal role in increasing patient participation, facilitating proactive involvement in disease management, and ultimately empowering patients to take charge of their own health.
However, despite the recent shift toward patient-centric healthcare applications, a majority of the applications discussed in the literature still adhere to the traditional model of healthcare decision-making, where patients are passive recipients of instructions rather than active participants in their care. These applications tend to assume patient compliance with prescribed interventions, with limited follow-up to assess adherence and effectiveness.
To enhance patient engagement and foster a sense of "ownership of CKD disease" among individuals with renal disease, the adoption of patient-directed self-management tools on mobile platforms is imperative. These tools can play a pivotal role in increasing patient participation, facilitating proactive involvement in disease management, and ultimately empowering patients to take charge of their own health.
Conclusions
From a cost perspective, dialysis stands out as a highly expensive treatment for end-stage Chronic Kidney Disease (CKD). Information Technology (IT) holds immense promise in contributing to the improvement of patient health outcomes on a population scale, ultimately with the goal of reducing the reliance on costly dialysis.
RenalReality, the software application employed at Taranaki Base Hospital, has already demonstrated the cost-effectiveness of this fundamental principle. However, this proposal takes IT to the next level by advocating for patient ownership of disease and the self-management of chronic conditions through the exchange of shared clinical information.
The introduction of the smartphone application, HealthCart, has the potential to revolutionize the landscape of CKD care. It can shift the paradigm from being institution-driven, which tends to be costly, to a more patient-centered approach. The inclusion of patients in the renal care workforce itself is a cost-effective measure.
When combined, RenalReality and HealthCart form a powerful duo that has the potential to close the loop in the multifaceted primary-secondary healthcare interface. The final step in this progression is raising public awareness. Importantly, this innovative combination is scalable and can be applied in other District Health Boards, making it a model that can serve as a national exemplar.
By investing in this proposal, HealthInformatics New Zealand is contributing to a cost-effective strategy for reshaping the healthcare paradigm in Taranaki and Northland District Health Boards. Moreover, this model has the potential for regional and national implementation, marking a significant step toward a more patient-centric healthcare system. In summary, this investment not only promises substantial cost savings but also holds the potential to bring about a transformative shift in healthcare delivery.