- How can we know if the data being collected are complete, appropriately complex, comprehendible, relevant and useful?
- What has to happen for good data to become useful knowledge that leads to ever-better and more affordable care?
Answering this question requires that we clearly know what do we want to do with these data. That is, we have to determine our goals and objectives for using the data. I suggest that there are two general points of view: Use the data to promote profound and rapid incremental change vs. focusing on slow, minimalist change.
Some people and institutions want to use the data to generate information and knowledge for the radical transformation of our healthcare system through continuous improvement in care effectiveness and efficiency. They a have very different way of answering the first question than those who are content with the status quo or seek minimal change. So, let's compare and contrast the "Radical Transformers" from the "Minimalists."
The radical transformers want to start curing our healthcare crisis in meaningful ways by making profound changes now.  They demand data that ultimately helps consumers and healthcare providers to make valid and reliable decisions, and to reward individuals who implement those decisions in ways that result in higher quality, lower cost (i.e., high-value) outcomes. They want to know about the well-care interventions that help prevent illness and serious psychological distress, optimize well-being and quality of life, and avoid complications. They also want to know about the sick-care interventions that help patients recover more quickly, with fewer risks and side effects, and remain healthier longer. And they want to know how best to integrate sick-care with well-care. 
In other words, they want data that generate sufficient amounts of easily accessible, highly useful information. And they want this information to support the growth of an "evergreen" (continually growing and evolving) knowledge base of valid, reliable and relevant evidence-based guidelines, which are personalized to each patient/consumer's particular health and healthcare needs. This knowledge should enable consumers and providers to have a deep and complete understanding of the most efficient and effective ways to:
- Assess each person's physiological and psychological problems and risks
- Select and implement well-care and sick-care interventions best suited for that person.
The data they need to accomplish these admirable goals are extensive in both their "depth and breadth." That is, they need data from many individuals and a wide diversity of different types of data. Such data include details about:
- Initial signs (vital signs, professional observations, lab test results, diagnostic evaluations, etc.); symptoms (physical and psychological problems experienced and reported by patients); and diagnoses
- Changes in the signs and symptoms following care delivery, including changes in the degree of functionality, mobility, pain and discomfort, emotional distress, overall quality of life, etc.
- Medication side-effects, errors and omissions, mortality rates, etc.
- The specific care rendered, including prescriptions, procedures, therapies, lifestyle change recommendations, supplements used, etc.
- Any evidence-based guidelines used, including aspects of the guidelines that were not followed ("at variance") and why they weren't implemented
- Patient/consumer compliance (adherence) to the recommendations
- Patient satisfaction
- Cost (i.e., administrative/claims data).
Of course, the amount of data required is greater for more serious, complex and chronic problems than for simple, short-term problems (such a sprained ankle).
Anyway, these people understand the complexities of the human mind and body  and are willing to do what it takes to build a healthcare system of the future, including reforming current economic models  and redirecting competition. 
Unlike the Radical Transformers, Minimalists aren't motivated to fix our healthcare system in profound ways. They reject the claim that we need to collect and analyze more comprehensive data. Instead of being driven to build a healthcare system of the future, Minimalists tend to:
- Focus on gaining financially from the economic and competition models that plague the current healthcare system
- Perceive data collection as an onerous and expensive task to be avoided
- Fear that accountability and transparency will make them look bad
- Deceive themselves into believing that there is no knowledge gap problem 
- Reject or minimize the importance of the mind-body connection
- Be closed to complementary and alternative medicines (CAM)
- View guidelines as an infringement on their professional judgment.
Minimalists also contend that we don't need comprehensive clinical data for evaluating outcomes since we could simply rely on administrative (claims) data that are routinely collected when submitting insurance claims. But this is clearly not the case for many reasons. 
And Minimalists tend to look for simple cause & effect relationships and easy explanations when trying to understand health problems, which would justify their minimal data requirements. But the quest for such simplicity often breeds ignorance, self-deception and faulty conclusions, and inhibits the healthcare community from knowing the best ways to prevent health problems and treat them cost-effectively for each patient/consumer.
To exemplify this issue of complexity, take genetic research. According to a recent NY Times article: "To their surprise, researchers found that the human genome might not be a 'tidy collection of independent genes' after all, with each sequence of DNA linked to a single function, such as a predisposition to diabetes or hearth disease. Instead, genes appear to operate in a complex network, and interact and overlap with one another and with other components in ways not yet fully understood." 
And what about the complexities of the mind-body connection? Here are two telling graphics:
As reflected in the images above, "psychosomatic disorders" add greatly to our country's healthcare costs. According to Thomas Pautler, M.D., a physician and lecturer specializing in psychosomatic disorders:
If we define psychosomatic illnesses as those involving a disturbance of physiology related in some way to situational conditions but without actual permanent end-organ damage (for example, migraines, functional bowel disease, and types of chronic pain), then we may account for as many as 25% of all outpatient visits. If we expand our definition of psychosomatic illness to include conditions such as hypertension, peptic-ulcer disease, hyperthyroidism, asthma, and chronic skin disorders where actual pathological changes are apparent as well as significant psychological factors, we can easily expand our ambulatory care percentage to the 50% range. Lastly, if we include serious physiological disorders such as disturbances in autoimmunity and the tendency for these disorders to appear or flare up with significant life changes and stress, we may continue to widen the magnitude of the psychosomatic problem . . . Even if we limit ourselves to the conditions that are purely psychosomatic - without demonstrable permanent end-organ changes - this 25% of illness may occupy a full 50% of the clinician's time in their management."An enormous amount of clinical data and related information is required before mental health disorders can be precisely diagnosed, appropriate treatments can be empirically determined, and interventions can be delivered with maximum efficiency and efficacy. The necessary data and information are lacking, however, partly due to the complicated and multifaceted nature of psychological problems. Mental disorders are extremely complex because every person and every disorder have their own unique set of symptoms and levels of dysfunction.  Furthermore, there are thousands of psychological and psychobiological symptoms, each of which can be associated with many types of functional impairments. Thus, certain mental disorders exhibit severe symptoms that are manifested in every aspect of a patient's life. They affect a patient's physical, behavioral, cognitive, emotional, interpersonal, and occupational functioning. Other mental disorders have fewer or less severe symptoms that cause less dysfunction. Nevertheless, all psychological difficulties are painful and create some degree of behavioral disruption, loss of productivity, somatic difficulties, and social conflicts. This complexity has made it very difficult to achieve a precise, detailed assessment of patients' symptoms and levels of dysfunction.
The data-gathering and analysis process is further strained by the wide range of possible underlying causes (i.e., etiologies) of each mental disorder symptom.  This situation has further complicated the information acquisition process. Assessing symptom etiology is difficult because psychological and psychobiological symptoms may be caused or exacerbated by many factors, including: current psychosocial stressors, childhood traumas, dysfunctional cognitive attributions and appraisals, erroneous beliefs, disturbing memories and mental images, psychological defenses, skill deficits, conditioned behaviors, neurotransmitter imbalances, and genetically predetermined temperament factors. In addition, a wide variety of biomedical illnesses and traumata, substance abuse, and medication side effects may present as or exacerbate patients' symptoms. Despite the complexities of symptom etiology, this information is often critical in making effective treatment decisions. For example, a patient experiencing depression due to an endocrine disorder should receive a different treatment than someone who is depressed due to an interpersonal problem. Understanding symptom etiology is also critical for effective prevention programs; one must know what causes mental health problems so they can be prevented. Thus, in addition to obtaining information about the nature and severity of patients' symptoms and levels of dysfunction, treatment-relevant information regarding symptom etiology must be objectively assessed.
In my next post, I will discuss how the validity (accuracy) and reliability (dependability) of information are tied directly to the completeness of the data upon which the information is built. I will also begin answering the second question: What has to happen for good data to become useful knowledge that leads to ever-better and more affordable care?
 Curing Healthcare Blog: Do we need profound changes now?
 Wellness Wiki: Well-Care Sick-Care Integration
 Wellness Wiki: Biopsychosocial healthcare
 Curing Healthcare Blog: Making sense of the complexity and keeping perspective
 Wellness Wiki: Reforming Current Economic Models
 Wellness Wiki: Redirecting Competition
 Wellness Wiki: The Knowledge Gap
 Wellness Wiki: Pay for Performance
 The Health Care Blog: QUALITY: Performance measures only have a little of the answer
 Modern Healthcare Online: Quality reporting initiative may be too cumbersome
 Wellness Wiki: Using Claims Data
 Caruso, Denise. A Challenge to Gene Theory, a Tougher Look at Biotech. NY Times (7/1/07).
 Pautler, T. (1991). A Cost-Effective Mind-Body Approach to Psychosomatic Disorders. In Anchor. K. N. (Ed.), Handbook of Medical Psychotherapy: Cost-Effective Strategies in Mental Health. New York: Hogrefe & Huber.
 VandenBos, G. R. (1993). U.S. Mental Health Policy: Proactive Evolution in the Midst of Healthcare Reform. American Psychologist 48, 287.
 Coie, J. D., Watt, et al. (1993). The Science of Prevention: A Conceptual Framework and Some Directions for a National Research Program. American Psychologist, 48, 1013-1021.
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