Tuesday, April 15, 2008

Personal Health Profiler™: Part 2

In my last post, I introduced our Personal Health Profiler™ (PHPro™) software application, a personal health knowledge system giving self-help (problem-solving) guidance and decision-support. I discussed how the PHPro offers a model of where personal health records (PHRs) ought to be heading.

Before I delve more into the particulars of the healthcare consumer and provider versions of our PHPro, I'd like to clarify a main premise I'm making: An abundance of relevant, personalized information about your physical, mental, and mind-body health problems and risks gives you greater understanding of how best to deal with them.

This may sound logical—the more you know and understand, the more effective your decisions and actions—but I've been debating this issue for many years with healthcare professionals who are more concerned about time constraints and information overload, than on comprehensive knowledge and understanding. As I wrote in a series of three posts about information overload and how to avoid it, accumulating massive amounts of health information over a person's lifetime need not cause overload if we deliver it in reports that save time and reduce confusion by:
  • Filtering out irrelevant information, so a person stays focused on what's important
  • "Serving up" the information as needed, rather than requiring a person to search for it
  • Personalizing the presentation, so that the information is tailored to a person's preferences (i.e., it is presented in a personalized manner to minimize confusion, increase clarity, and maximize ease-of-use)
  • Organizing and summarizing the information in a way that enables people to examine the data from different perspectives, as well as to "drill down" from the general to the underlying details
  • Tailoring instruction (education materials) to a person's ability to learn and particular information needs.
The PHPro incorporates all these capabilities.

Nevertheless, this still begs the question: Why do we need so much data? After all, there are health assessment instruments that ask as few as five or six questions (EQ-5D and SF-6D), behavioral health instruments that have as few as 24 or 32 questions (BASIS-24 and 32), and personal health records (including data storage web sites) that are limited to asking a few dozen questions and track a dozen or so types of information (i.e., a person's vital signs, diagnoses, medications, basic lab results, treatment procedures, allergies, inoculations, diet, sleep, activity levels, stress/mood and emergency contact information).

The PHPro, on the other hand, contains thousands of questions (using sophisticated branching logic, so only the questions pertinent to a person are asked), and manages hundreds of different data types (not to mention adding decision support and self-help tools). But why bother being so comprehensive? Isn't it true that "less is more?"

Having written extensively about this issue here and here, let me know say that when it comes to healthcare, the adage "more is less" not only doesn't apply, but less knowledge is dangerous! Healthcare providers and consumers often lack the knowledge needed for making consistently good, well-informed decisions. In fact, a knowledge gap is a key reason we have a healthcare crisis, and why consumers rarely get high-value care. That's because better health-related decisions come from having "deeper" (more complete) understanding of a person's body, mind, spirituality, and environment, which can only come from having an abundance of relevant knowledge. Why? Because the accuracy and dependability of your understandings depend directly on how much you know about a wide variety of important things.

So, when it comes to making decisions about preventing, diagnosing, self-managing, and treating health problems, more complete knowledge results in better decisions and outcomes.

For example, only after analyzing a considerable amount and diversity of information can we gain the knowledge we need to all the following:
  • Determine relationships between the medications a person is taking and how their side-effects (or drug-drug interactions) may be causing or exacerbating the person's symptoms and abnormal lab test results
  • Determine relationships between a person's medical conditions, stress levels, diet, metabolic functioning, and environmental influences, and the person's symptoms and abnormal lab test results
  • Predict if one's health is improving or being maintained, or if risk factors are likely to become illnesses due to aging or deteriorating health
  • Discover what types of treatments and preventive interventions work best for particular types of individuals with particular health conditions.
And when it comes to diagnosing complex or multifaceted medical conditions, and problems with a psychological component, a substantial amount of information is also often necessary. For example, it is important to assess the nature, severity, and etiology (causes) of the depressive symptoms in light of a person's current life-events, past experiences, and personal demographics. This means using a vast data pool that measures such things as:
  • The intensity, frequency, duration, and cyclical time occurrences of the depression
  • The etiology of the depression, including family history, current psychosocial and biomedical problems, medication side-effects, and psychoactive substance abuse
  • The nature and degree of dysfunctional cognition associated with the depression such as thoughts of helplessness, hopelessness, suicidal ideation, self-deprecation, and existential/spiritual dilemmas, as well as cognitive slowing, rigidity, and focusing problems
  • The nature and degree of concomitant (co-occurring) physiological symptoms such as lethargy versus agitation, changes in sleeping and eating patterns, and physical complaints
  • The nature and degree of behavioral disruptions such as social alienation versus clinging dependence, and occupation or education dysfunction
  • The nature and degree of coexisting emotional problems such as anger toward self, anxiety, guilt, and shame
  • Demographics, such as age, sex, ethnicity, and socioeconomic status.
Even health status and risk appraisals used by wellness coaches often require extensive data for establishing, implementing, and evaluating well-care plans. This data pool includes such things as a person's:
  • Background information (demographics)
  • Health exams and interventions
  • General health status
  • Attitudes about health
  • Symptoms
  • Existing health problems/conditions
  • Biometrics (weight, blood pressure, cholesterol levels, vital signs)
  • Health risk factors
  • Psychological/emotional quality of life
  • Distressing life events
  • Personal achievement & success, personal power & influence
  • Self-esteem, self-competence & confidence
  • Life purpose & meaning , goodness of life. life satisfaction
  • Interest, involvement, and enjoyment of your daily activities
  • Stress and trauma
  • Work-related issues
  • Caregiver responsibilities
  • Social relationships
  • Emotional state, mood
  • Coping strategies
  • Physical activity & exercise
  • Nutrition
  • Sleep
  • Energy levels
  • Wellness coaching preferences
  • Areas to address with coach.
Here, too, the PHPro manages all this information, and much more.

Up to this point, I've been focused on the importance of comprehensive knowledge to an individual's health & quality of life. This issue, however, extends to the quality of our entire healthcare system. Here, for example, is a link to an explanation of Sir Muir Gray, Chief Knowledge Office of Britain's National Health Services, about how the lack of adequate healthcare knowledge is preventing us from solving the following "magnificent 8 problems:
  • Errors and mistakes
  • Poor quality healthcare
  • Waste
  • Unknowing variations in policy & practice
  • Poor patient experience
  • Overenthusiastic adoption of interventions of low value
  • Failure to get new evidence into practice
  • Failure to manage uncertainty.
He continues:
[We are currently in a] third industrial (and therefore, healthcare) revolution [that] is driven by citizens, IT and knowledge. Professionals are by and large two decades off the zeitgeist and this is not restricted to healthcare, it's seen across all professions.
Knowledge is the enemy of disease, the application of what we know will have a bigger impact than any drug or technology likely to be introduced in the next decade. I'm talking about three types of knowledge here Statistics, Evidence and Mistakes [italics added] we need to be able to deliver these as simply and abundantly as we deliver clean water… What we're introducing in NHS bodies is a Chief Knowledge Officer--because you need energy to make knowledge appear everywhere….We should be thinking systems rather than structures, recognizing the network that runs alongside every bureaucracy is responsible for innovation.
While I would argue that his three types of knowledge don't cover all bases, I fully agree that we need to do a much better job in generating, sharing, and using a great diversity of knowledge focused on fixing our healthcare system and improving outcomes all each patients/consumers.

While current day personal health records do little, if anything, to address these global, systemic problems, the PHPro is designed to do support the kind of research that generates the knowledge needed to solve the magnificent 8 problems.

So, the vision I'm espousing—which focuses on improving people's health and wellbeing through the development, sharing and use of wide-ranging knowledge—spans from the individual patient/consumer, sick-care provider and wellness coach to the entire healthcare system. My sincere desire to help turn this vision into a reality has kept me motivated for over 25 years in evolving the PHPro.

Click here for the last post in this series.

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