Disease Information: Making It Relevant To Patients

Author: John Putzke


There is a common look among newly diagnosed patients, the wide-eyed stare of information overload.  Like deer in headlights, it’s all too often associated with a paralyzing freeze, resulting in a missed opportunity to engage and inform patients.  This is the first in a series of articles exploring ways to connect patients to personally relevant information.  This article targets the first step, the efforts of healthcare providers to organize patient-related information and educational materials.  A practical guide is presented along with examples using an epilepsy population.

The Great Flood

The ease of gathering disease-related information makes results from even causal searches daunting.  The depth and breadth of topics is extensive, but is typically spread across multiple, unrelated sources.  Thus, patients must keep track of and ferret through islands of sources, overgrown with repetitive information, to find relevant details.  In addition, numerous factors complicate and add to the flood of potentially applicable information such as:

  • Disease Characteristics
    • e.g., systems involved, symptom variation, disease stage and progression
  • Domains Impacted
    • e.g., physical, social, emotional
  • Treatment Options
    • e.g., surgical vs. medication
  • Stakeholder Interests
    • e.g., patients vs. caregivers 

Taken together, the experience can be overwhelming to patients and all too often associated with a paralyzing freeze, resulting in a missed opportunity by healthcare providers to engage and inform patients.

Navigating these waters involves multiple steps and components, but the home port is a well-organized tool-chest of health-related information and educational materials.  Below is a practical guide for categorizing these materials which can be easily modified and adapted as needed for various disease populations.    

The Bucket Brigade

To gain control over the flood of information an exhaustive range of buckets are needed.  Various models of health and wellbeing domains, the buckets, have been proposed (e.g., here and here).  Although some commonalities emerge (e.g., Emotional and Social Health domains), differences across models are pronounced often making modifications necessary to fit the aims of a specific information classification strategy.  A discussion of the factors associated with selecting a model and what, if anything, to modify was considered beyond the scope of this article.  Instead, the model and related domains are assumed to be in place with the remaining task being how best to organize and categorize the information within each bucket. 

An adaptation from the Epilepsy Foundation model was used as an example (see here).  The domains and a brief description are as follows:

  • Emotional Health
    • Feelings, mood and related behavior
  • Stress Management
    • Learning to respond to life’s stressors
  • Sleep
    • Restful period of relative inactivity of mind and body
  • Diet and Nutrition
    • What one eats and drinks
  • Physical Activity
    • Voluntary body movement and exercise
  • Independent Living
    • Self-met day-to-day needs capacity
  • Social Relationships
    • Climate of exchange and interactions between people (social, physical and verbal)
  • Education and Employment
    • Continued learning and work-related activities
  • Disease Information*
    • Physical and/or diagnostic characteristics of a disease
  • General*
    • Disease centered community involvement and events
  • Treatment and Procedures*
    • Information about various treatments and procedures

Three domains were added (marked with an asterisk*) to ensure the entire range of issues encountered within epilepsy clinical care settings were covered.  This change was made to address the broader goal of leveraging a web-based patient portal (i.e., Studytrax) to dynamically generate and monitor patient use of targeted, personally relevant disease and treatment-related information, and educational materials. 

What’s In The Buckets?

Gathering disease-related information and educational materials is necessary, but not sufficient building systems that deliver personally relevant information to patients.  Certainly disease information (e.g., seizure type) is one component, but characteristics about the patient, as well as the information source itself are also key components.  These later components are general, and thus apply across disease populations.  Recommended characteristics that have worked well are presented below.  Those looking to catalog items can find a template spreadsheet with appropriate pick-list items here.  

  • Type
    • Description: The media type of item
    • Options: Website, Video, Podcast, Text
    • Notes: The “Text” option refers to written information to be inserted into a report. Ideally the text is dynamic, rather than static. That is, the text generated should be logic-driven based on patient data values. For instance, Low, Normal, and High may be used to describe a lab value as appropriate.
  • Domain
    • Description: The item’s relevant domain area
    • Options: Specified by the model adopted and any modifications. In the current example: Emotional Health, Stress Management, Sleep, Diet and Nutrition, Physical Activity, Independent living, Social Relationships, Education and Employment, Disease Information, General, Treatment and Procedures
    • Notes None.
  • Disease Relationship
    • Description: Whether the item is related to a specific disease (e.g., seizure type) or generally applicable across disease populations (e.g., sleep hygiene)
    • Options: General, Disease Specific
    • Notes: Within multi-disease informational systems, this characteristic identifies items that are applicable across more than one disease state (e.g., educational video on “MRI – What to expect”).
  • Audience
    • Description: The target audience of the item
    • Options: General Public, Scientific
    • Notes: Used to identify whether the informational item targets the scientific community (e.g., a journal article) or the general public. The writing style and background knowledge assumptions are typically distinct enough that thought best to present these target types separately.
  • Reading Level
    • Description: Reading level of the item
    • Options: 5Th Grade or below, 6th to 9th Grade, 10th Grade or Above
    • Notes: None
  • Developmental Level
    • Description: The target developmental level of the item
    • Options: Lower School, Middle School, High School or Above
    • Notes: None
  • Access Information
    • Description: How the item is accessed
    • Options: URL, File Path
    • Notes: None
  • Target Person(s)
    • Description: The target person of the item
    • Options: Patient, Caregiver with Adult Patient, Caregiver with Child Patient
    • Notes: None.
  • Access Link or File Path
    • Description: The link or file path of the item
    • Options: None
    • Notes: None
  • Description
    • Description: Item Description
    • Options: None
    • Notes: Summary sentence or two about the item.

Taken together, these characteristics will help further the efforts to successfully connect patients to relevant information.  Forthcoming articles will examine other components and examples from various disease populations.