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Without context, everything is nothing

Dr. Matthias Naab
Dr. Marcus Trapp

Patients seeking medical assistance are usually required to answer several questions about their medical history. Physicians ask these questions to narrow the scope of possible diagnoses. This process, referred to as anamnesis, is an integral part of any medical diagnosis, and the contextual information it contains helps treating physicians or clinicians determine an appropriate treatment as a next step. Contextual information thus creates benefits for various areas of our lives. This idea also forms the guiding principle of the concept for a national health platform presented here.

In the field of medicine as well as everyday life, understanding contextual matters is incredibly useful when it comes to solving specific problems or providing advice to others.  When someone asks us for directions to a particular destination, we need to at least know their current location and the modes of transportation available to them. If someone asks us for relationship advice, it’s important for us to understand the current dynamics of their relationship and situation.

A look at the world of IT that surrounds us makes this point even more clear. When we interact with software systems that lack context, they often seem limited. For instance, basic versions of search engines, which lack context, provide vast amounts of results.  Searching for “restaurant” thus leads, among other things, to explanatory texts that define the term “restaurant.” While this might be the correct result for certain search intentions, most people query “restaurant” when they want to know which restaurants are nearby.

When the search engine automatically takes the user’s context into account, the results are suddenly much more meaningful: The user’s current location leads to suggested restaurants in the vicinity. If the software considers additional factors like the time of day or personal food preferences, the results become even more helpful, narrowing down the options to suitable restaurants that are currently open and align with individual preferences. Alternatively, there’s always the option to manually input contextual information, such as the location or the time of the visit.  While such user inputs would also yield good results, they would also increase the effort required.

Search engines are just one example; there are numerous other software applications that, by incorporating contextual information, provide improved results. Examples include navigation systems that continuously require a user’s current location for reliable guidance, fitness trackers that base recommendations on a full set of observed body metrics, or matchmaking platforms that can only offer promising suggestions when traits and preferences are shared.

The wide range of software applications operating with the aid of contextual information, and thus delivering value, has ensured that the overwhelming majority of users are fundamentally familiar with them. These users willingly share their contextual factors with the software systems in order to access individually tailored offerings.

Features that are perceived as intelligent and particularly helpful almost always depend on the utilization of contextual information and fuel the ongoing growth of user expectations. Those aiming to create new successful services thus focus on increasing automation and enhancing user experience by bringing together existing information and contextual data.

Context is the key to real patient benefits

A central objective of the national health platform is to provide patients with trustworthy health information and services that are selected and tailored to suit their current health situation.

The figure below depicts a streamlined image of the national health platform. The platform envisions a process by which information and service offerings are delivered to patients without explicitly incorporating external contextual information.

The national health platform aims to generate the highest possible benefit for patients by offering reliable health information and services that are as relevant as possible to their current health situation. Achieving this goal would require each patient to manually input the necessary contextual information. This solution is simply not feasible in today’s world, as it would create significant user burdens and thus fail to gain any noteworthy traction.  Nonetheless, patient contexts are essential to determining which information and services are appropriate for a specific individual.

The core concept of the platform proposed here is to harness contextual information that is already available in other IT systems (e.g., office management systems, electronic health records, or health trackers) for the selection of information and digital services on the national health platform. This would allow patients to determine which contextual information about themselves that originates with other IT sources can be integrated into their pathway and thus foster an improved user experience.  The resulting quality in outcomes could constitute a strong unique selling point for the platform.

How contextual information leads to specific patient benefits

Services and information that are provided automatically must be highly relevant to an individual’s situation if users are to embrace them. This is why the national health platform aims to embed information within a structured process of learning and interaction that results in a wide range of personalized patient information pathways (see Discover more, search less – prototype of a national health platform).

A patient information pathway refers to a tailored-to-the patient course of interaction in which the services and information offered are aligned with a patient’s unique situation. The customized assistance they receive is thus perceived as beneficial. Given the vast range of potential information pathways, it is not immediately clear, exactly, how this type of support can be generated automatically. Even for experts, making appropriate selections from an immense pool of information and service offerings can be challenging.

The solution lies in a newly created modeling language that enables experts to create pathway models as templates for the information needs that arise during the course of an illness. These pathway models take into account various aspects such as the course of treatment within a specific healthcare system, as well as different phases of disease management and (legal) issues related to benefits.

Pathway Model Creators

Developing such pathway models requires the presence of yet another role within the digital ecosystem: that of the pathway model creators. These creators are experts who draw on the typical trajectories of a condition, its treatment and its management to describe the anticipated information needs for a specific symptom. Employing a community approach here can help create an exhaustive and rapidly expanding knowledge base for the national health platform.

Processing contextual information is essential to the modeling process, as the envisioned trajectory is linked to information needs that can be expected over time. The situations in which patients find themselves, such as having to decide whether to have an operation or not, will determine which health information and services are presented to them. The expertise and experience of a broad range of actors from various scientific disciplines are thus integrated into the information pathways.

This involvement of an expert community is a cornerstone of quality assurance and generates modeled knowledge that can be verified and explained.  Based on information about a given situational context, the modeled templates are adjusted and expanded over time. The combination of human expertise with technology, rather than the implementation of purely AI-based solutions, should bolster confidence in a national health platform.

If implemented, the national health platform would generate and utilize millions of automatically personalized patient information pathways. These pathways, guided by the pathway models, incorporate concrete and patient-specific contextual information to select the health information and services offered at any given time. These pathway models, which are loaded with professional expertise and experiential knowledge, thus form the missing piece in the puzzle that makes it possible to provide customized information offerings to patients.


What is meant by “context,” exactly?

In this article, so far, we’ve used the term “contextual information” in an abstract manner. However, when it comes to using the term with reference to data and information, there is considerable potential for misunderstanding. On the one hand, the specific nature of the data and information under discussion is rarely specified and, on the other, too little is said about intended uses, emerging benefits and the resulting protection needs.  We therefore elaborate here upon the term “context,” offering clarification.

The concept of “context” is used in this article to refer to any information specific to a person’s situation that is available in IT systems and can be used to customize offerings to their needs. Contextual information can include, for example:

  • Basic personal variables: e.g., age, gender, weight
  • Patient preferences: e.g., preferences regarding information providers, preferences regarding information attributes (language, comprehensibility, etc.)
  • Health status information: e.g., symptoms, medication use, utilization of healthcare services.
  • Current information: e.g., on “events” such as a prescription for a new medication, being admitted to a hospital, situational moods and current well-being
  • Information about interaction with the national health platform: e.g., articles already read, feedback on articles

Other types of pertinent information that are not classified as contextual information include reliable health-related information, such as explanatory articles about specific medical conditions. These resources, made available by providers, lack any association with an individual’s personal details.

Contextual information, in the context of the national health platform outlined here, always serves the direct purpose of enhancing benefits for patients. This objective also informs all efforts to protect this data.

Contextual information in trusted hands

In principle, there are a variety of actors in the market that could establish a digital ecosystem and, with the consent of patients, aggregate and process their specific contextual information within a platform. However, each platform operator will certainly bring their own values to the design of their platform. While conceptualizing the national health platform proposed here, we thus emphasized the need to establish a trustworthy institutional structure that handles sensitive contextual information responsibly. (see Successfully establishing health ecosystems – models from abroad)

Contextual information should always be processed for the sole purpose of delivering better user experiences and improved information and service offerings. This is the core focus of the platform; these pieces of information are therefore not retained indefinitely or used for other purposes. Unless data use has been explicitly authorized for other purposes, the data is only stored for as long as necessary to fulfill its intended purpose.

Patients should retain full control over how their personal contextual information is used through a dedicated consent system. They should be able, at any point in time, to select or determine which providers and sources of contextual information are used.

As a whole, the platform aims to create valuable patient benefits and clearly communicate them to all actors in the healthcare sector. The decisive issue here is that the responsible and transparent use of health data can generate welfare effects and individual benefits. Of course, safeguarding personal data is always a priority.

Context matters

Context is a critical factor in making software solutions useful and enjoyable. This holds true for all sectors and, of course, the healthcare sector as well. While people have long been enjoying these advantages in many other areas, they often encounter fragmented systems in healthcare that either fail to consider contextual factors or do so insufficiently.

Offering personalized information tailored specifically to a patient’s needs, patient information pathways enhance the user experience by saving the patient considerable time in finding the information and services that serve them best.

Authors

Dr. Matthias Naab and Dr. Marcus Trapp, co-founders of Full Flamingo, an eco-tech startup, aim to leverage the power of the platform economy for the greatest possible impact on sustainability.  Before 2022, they held senior executive positions at Fraunhofer IESE, where they played a pivotal role in developing and overseeing the field of “Digital Ecosystems and the Platform Economy.”

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    Understanding information transfer as a process

    Dr. Sebastian Schmidt-Kaehler
    Dr. Inga Münch

    Many health information providers have good intentions. They strive to have a positive impact on the individuals health behaviour, assisting them in managing illnesses and making crucial treatment choices. However, in today’s digital age, a significant portion of this well-intentioned information fails reach its intended audience, who find themselves inundated in the ever-growing flood of information in the ongoing struggle for their attention. Setting up context-sensitive information pathways could thus offer valuable support and mitigate the losses resulting from scattered information.

    When it comes to producing and providing health-related information, it is often assumed that this information is best transmitted from a sender through a channel to a recipient, who then comprehends the information and converts it into new knowledge. Once a message is transmitted, it can influence an individual’s behavior and decision-making process. However, this sender-receiver model, originating from the 1940s, doesn’t accurately reflect real-world practices. The process of acquiring knowledge is far from a one-time occurrence; rather, it’s a complex and multifaceted learning process that is influenced by various factors.

    One field that is dedicated to the complexities associated with acquiring knowledge and skills is education science. Pedagogy experts have long since questioned simple sender-receiver models and resisted approaches to learning that attempt to forcibly convey or “funnel” knowledge into learners. Instead, the field of education science sees learning as a process in which learners organize knowledge in their unique ways. The acquisition of knowledge and skills is never seen as a one-time snapshot, but rather as an ongoing, manageable process that takes place in equal parts on the cognitive and emotional levels.  This process is best described as a learning path or information pathway, and it provides advices as to which information is likely to be needed at any specific moment.

    “Knowledge can never be transmitted as such from one person to another. The only way an organism can acquire knowledge is by constructing and configuring it for itself.”

    Ernst von Glasersfeld (1987)

    Selective information processing

    Human attentional resources are limited. In other words, we do not consciously absorb and process all of the information that comes our way.  In fact, to capture our attention, information must hold some relevance to our circumstances and correspond with the context in which we find ourselves. This principle holds especially true for health information, as patients go through various phases of illness over time and face shifting informational needs along the way.

    These phases can be described in terms of an individual treatment pathway. The path often begins with acute care and an initial diagnosis, which usually prompts a patient’s need for basic information about their condition. The next phase involves making decisions with regard to treatment and possibly also choosing a specialist for further care. During the rehabilitation or medical aftercare phase, patients typically shift their focus away from diagnostic and treatment procedures, and instead prioritize obtaining information and support on effectively managing and living with their specific condition.

    The findings on the influence of different phases on selective attention can be related to the classical model of coping with illness. According to this model, when a patient is diagnosed with a serious illness, the first phase they enter is one of fear, anxiety and sometimes even denial of the diagnosis itself. This initial shock often leads to anger, followed by despair and a profound sense of personal vulnerability. After passing through a process of inner self-negotiation, the patient enters the final phase in which they accept the illness. The phases described here, as well as the emotions associated with each phase, can play a significant role in how information is received and processed.

    Health information is often generated with the aim of minimizing risky behavior and exerting a positive influence on individual health choices. In the quest to determine which information is important at what moment, one useful tool is the “Stages of Change” model used in the field of health sciences to understand patient behavior. These models postulate that people undergo a process of development involving several different stages on the path to changing their behavior.

    Between the ideal and the reality

    The stages of change models, commonly applied in the realm of health sciences, underscore the significance of employing a well-structured and process-driven approach to information transfer, particularly in the pursuit of promoting informed decision-making and enhancing individual health literacy. These models suggest that patients be offered only information that is actually relevant in each respective phase of illness, coping and care.

    In reality, however, the situation is much different. Patients are often confronted with an overwhelming flood of information from diverse sources, each of varying quality. They navigate through medical consultations, explore search engine results, find themselves lost in information bubbles and social media echo chambers, read pamphlets from health insurance companies, and receive enthusiastic advice from friends and family. This usually takes places simultaneously and without any coordination.

    “Searching for information on the internet is like asking for a glass of water and being served with a fire hose, all the while not knowing where the water is coming from.”

    Michael Scholz (WHO) 2003

    The uncoordinated provision and dissemination of health information as practiced to date lacks promise as a strategy to empower individuals in making well-informed decisions related to their health, particularly in light of the information overload prevalent in our contemporary digital era. In 2019, the National Action Plan Health Literacy emphasized the need for establishing a systematic method of information management that spans the entire course of an illness. Following this thought, the provision of health information should be embedded into a structured learning pathway that meets patients’ needs, depending on the specific situational and support context (see Discover more, search less: prototype of a national health platform).

    Bibliography

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    Authors

    Dr. Sebastian Schmidt-Kaehler serves as the co-director of the Healthcare Program at the Bertelsmann Stiftung. Before this, he held the position of managing partner at Patientenprojekte GmbH, a consultancy focused on organizational management with a specialization in patient communication. From 2011 to 2015, he assumed the role of national director at Germany’s Unabhängige Patientenberatung (UPD), an independent provider of evidence-based consumer health and patient information. He is also currently a member of the expert committee for the National Action Plan Health Literacy in Germany.

    Dr. Inga Münch studied Public Health and leads the “Trusted Health Ecosystems” project at the Bertelsmann Stiftung.  Most recently, she has been involved in various projects that merge patient-centered care with digital health solutions. Her PhD thesis centered around the concept of health-literate organizations. Through her work on a variety of scientific projects, Inga Münch has conducted research in areas encompassing health education, patient-oriented care and health systems.

    Recommendations

    Discover more, search less – prototype of a national health platform

    The core service of the national health platform outlined here is to provide personalized information pathways that adapt to changing information needs and have the capacity to facilitate the handling of health-related information. To illustrate our concept, we have developed a prototypical design that shows what this platform might look like one day. Increasingly, patients are using the internet to gather information from sources beyond the traditional healthcare system. Currently, they rely primarily on major search engines for this task.

    Find out more

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    To contact our project team, please use our form. We look forward to your message and will get back to you as soon as possible.