Consumer-Centered Cognitive Support through Clinical Decision Support

Two things have been merging in my mind:

1. A preliminary report released two weeks ago by the National Research Council of the National Academies titled "Computational Technology for Effective Health Care: Immediate Steps and Strategic Directions." In my previous post, I discussed how this report criticizes the bulk of today's health information technologies and offers recommendations for innovative (disruptive) technologies. Included in the report is a call for the invention of a new type of software program that offers "Consumer-centered Cognitive Support (CCS)" (also known as Patient-Centered Cognitive Support (PCCS). CSS consists of computerized methods that assist healthcare providers and consumers in making better decisions and taking more competent actions.
2. A webinar presented last week by the Agency for Healthcare Research and Quality (AHRQ) National Resource Center for Health IT, titled "A National Web Conference on Evaluating Measures of Success Using Clinical Decision Support." The presenters discussed current day "Clinical Decision Support (CDS)" software systems, which are still in their infancy and are designed to assist healthcare providers and consumers in making better decisions and responding more competently.

It seems obvious to me that the next generation of CDS systems should, therefore, be multifunctional programs that focus on fostering CSS.

In an effort to clarify my thoughts, I've begun composing the following PowerPoint presentation defining CSS and CDS, and the intersection between them. I'll have more to say about this in future posts.

Click an image to enlarge it.

National Research Council Report: How to Fix What’s Wrong with Today’s HIT

As recently discussed on The Health Care Blog, the National Research Council of the National Academies released a draft report titled "Computational Technology for Effective Health Care: Immediate Steps and Strategic Directions," which criticized the bulk of today's health information technologies (HIT) and offered their advice. The following quote summarizes the Council's primary conclusion:

In short, the nation faces a health care IT chasm that is analogous to the quality chasm highlighted by the IOM over the past decade. In the quality domain, various improvement efforts have failed to improve health care outcomes, and sometimes even done more harm than good. Similarly, based on an examination of the multiple sources of evidence described above and viewing them through the lens of the committee's judgment, the committee believes that the nation faces the same risk with health care IT—that current efforts aimed at the nationwide deployment of health care IT will not be sufficient to achieve the vision of 21st century health care, and may even set back the cause if these efforts continue wholly without change from their present course. Success in this regard will require greater emphasis on the goal of improving health care by providing cognitive support for health care providers and even for patients and family caregivers on the part of computer science and health/biomedical informatics researchers. Vendors, health care organizations, and government, too, will also have to pay greater attention to cognitive support. This point is the central conclusion articulated in this report.

The path the recommend includes a call for radical change; I quote:

Change in the health care system can be viewed through two equally important lenses—those of evolutionary and of radical change. Evolutionary change means continuous, iterative improvement of existing processes sustained over long periods of time. Radical change means qualitatively new ways of conceptualizing and solving health and health care problems and revolutionary ways of addressing those problems. Any approach to health care IT should enable and anticipate both types of change since they work together over time.

Their conclusion and recommendations are consistent with something I posted previously about predictions the HIT would control healthcare costs and improve care quality, whereas results for the current crop of products show there is much room for improvement. Adoption rates are very low and those using HIT have seen poor to mediocre return on investments.

I fully agree with report's point that a key part of the solution requires radical HIT innovation. I'm not talking creating about variations of conventional products that now crowd the market. Instead of these relying on such unimpressive "me-too" commodities, I'm we ought to be developing and promoting dramatically different types of software applications—a new generation of truly useful tools ("disruptive technologies/innovations")—that enable healthcare consumers and care providers to seamlessly manage health risks and problems through innovative integration of knowledge and technology that enriches healthcare systems.

To be of value, these disruptive innovations should include radical alternatives to the extremely complex interoperability and technology standards, the inefficiencies of XML, and the costly centralized systems that dominate the HIT landscape. In addition, we need radical alternatives to the inflexible software programs that do little to support providers' clinical decisions, to aid consumers/patients in their self-care, to coordinate care across healthcare disciplines, and to enable researchers to generate and disseminate evidence-based guidelines.

These next-generation HIT architectures and programs should be extremely flexible, modular, ever-evolving, easy-to-use, low-cost, and secure. They ought to:

• Help consumers make wise health decisions and understand the impact of their choices on their physical health and psychological wellbeing (see this link)
  
• Help consumers deal with chronic conditions by supporting health education programs promoting effective self-maintenance (see this link)
  
• Allow consumers to authorize health data sharing at a granular level of control for optimal privacy (see this link)
  
• Maximize healthcare value and safety by promoting ever-more efficient and effective care through development and deployment of evolving evidence-based guidelines for treating illness and fostering wellness/prevention (see this link)
  
• Support whole-person (mind & body) care within a patient-centric life-cycle value chain (see this link)
  
• Promote both the continuity of care and the integration of sick-care and well-care (see this link)
  
• Protecting populations with better biosurveillance and post-market drug & medical device surveillance (see this link), as well as supporting first-responder and trauma center staff (see this link).

In the next few weeks I will demonstrate a disruptive innovation I began developing in the early '80s, which shows a unique way to satisfy these daunting requirements.

A Whole-Person Approach to Diabetes Health Education Part 4 of 4

In my last post, I discussed the effect of mental stress and personality characteristics on a diabetic people's ability to control their blood glucose levels. In this post I focus on the role of health information technology in support of health education programs.

The Role of Health Information Technology

What do people with diabetes (and other chronic conditions) need in order to overcome their psychological obstacles and promote healthy living? As previously discussed in this paper, they must have adequate knowledge and understanding, positive emotions, rational attitudes and beliefs, effective coping skills, and motivation. That means they not only have to be aware of their physical health problems and ways to manage them, but they must also be aware of how their mental health (attitudes, emotions and mental stress) affects their blood glucose and how to control it. Achieving this daunting goal requires health coaching and counseling, of course.

The coaching and counseling services can be enhanced through interactions with other people and use of health information technologies. These people may be healthcare professionals, family and friends, and even "virtual acquaintances" through Internet-based social networking (e.g., peer-support groups). The health information technologies include web sites, educational software, psychologically-based self-help software tools, and personal health records (PHRs).[1]

Unfortunately, we are in the "Stone Age" when it comes to most health information technology. Current day PHRs are not very useful to the typical consumer/patient, and could be much more useful to professionals.[2]

What is needed is an easy, low-cost way for comprehensive physiological and psychological data to be transformed into useful personalized information. This information should increase people's awareness of their current health status and risks, as well as provide information that increases their ability to manage their diabetes. Today's PHRs are very immature regarding these types of capabilities.

By way of full disclosure, I've been developing such a health information software program for over two decades, called the Personal Health Profiler™ (PHPro™). The PHPro is a major departure from the kinds of PHRs in use today. It promotes more rapid and complete understanding of a person's physiological, psychological and mind-body functioning and risks; it provides ongoing feedback and instruction; and it helps a person developing effective coping strategies. The information presented by the PHPro comes from analysis of detailed data about the relationships between a person's:

• Internal dynamics—including coping skills, problematic physical signs and symptoms, co-existing illnesses, emotions, mental stress, and cognitions (attitudes, beliefs, expectations, etc.).
• Behaviors—including diet, exercise, alcohol and substance use, sleep, etc.
• External influences/causes—including stressful interpersonal relationships, stressful and unhealthy physical (e.g., work, living) environments, economic pressures, etc., as well as supportive conditions that promote good health.
• Medications—including possible side-effects, drug-drug interactions, and precautions.
• Demographics—including gender, age, ethnicity, socioeconomic status, etc.

In addition, the PHPro provides these essential functions:

• "Pushes" targeted information to consumers and professionals to fill knowledge gaps and increase understanding, instead of requiring that the information be "pulled" by them. This means exceptional "findability;" that is, navigating to and accessing relevant information is a breeze compared to the complex and often convoluted process required to obtain and filter desired information from typical web portals and search engines.
• Identifies key life stressors and health risks, as well as a person's underlying attitudes, beliefs and emotions, which help focus coaching and counseling efforts, and improve self-management.
• Delivers warnings, alerts and other essential feedback, so necessary adjustments can be made to plans of care in a timely manner.
• Uses a structured, personalized coping strategy methodology that helps a person attain more adaptive coping skills.
• Identifies potential medication side-effects, drug-drug interaction, and precautions to minimize prescription errors and manage problematic medication issues.
• Supports well-care/sick-care integration.[3]
• Continually evolves using flexible software modules, data sets and algorithms that are all transparent and easily modifiable.
• Accommodates any current and future data and technology standards.[4]
• Continually feeds a knowledge base with de-identified personal health information to support research efforts for continually improving care effectiveness.

These capabilities make the PHPro a useful tool supporting a whole-person approach to diabetes health education.

International Diabetes Health Education Program
I am honored to be part of an international, interdisciplinary group that has been collaborating for about eight months on developing integrating whole person health information technology, social support, and health coaching and education. Our efforts aim at enabling and motivating diabetic people to manage their condition effectively by developing healthy attitudes and beliefs, emotions, coping strategies, psychosocial relationships, and life satisfaction, as well as gaining essential awareness, knowledge and skills.

I will discuss more about this exciting collaboration in future blog posts.

Conclusion

Effective self-management of diabetes (and other chronic illnesses) is difficult for many individuals because it involves a complex interaction between both psychological and physiological (mind and body) factors. A whole-person approach to diabetes health education is therefore important. It combines self-care instruction, coaching and counseling, and innovative health information technology tools to build knowledge and competence, establish effective coping skills, and motivate diabetic people's motivation by helping overcome psychological obstacles.

References:
[1] National Guideline Clearinghouse. 2006 May. Available at this link
[2] Beller, SE. Health Information Technology: Past Predictions, Current Reality, and Future Potential - Part 1. 2008 Nov. Available at this link
[3] Beller, SE. Well-Care Sick-Care Integration. Available at this link
[4] Beller, SE. Art of Health Knowledge Creation and Use. Available at this link

A Whole-Person Approach to Diabetes Health Education Part 3 of 4

In my last post, I began an in-depth examination of the psychological factors influencing blood glucose control, starting with the effects of emotional depression and effectiveness of one's coping skills. In this post I focus on the effect of mental stress and personality characteristics.

Mental Stress and Diabetes Management

Health Effects of Stress
Prolonged mental (emotional, psychological) stress can cause persistent high blood glucose levels. Mental stress can be caused by many different things, including problems in one's marriage, job, health, or finances. When people are anxious, angry, guilty or ashamed about such problems, their mental stress triggers the "fight-or-flight response" in their bodies. This automatic response prepares their bodies to take action to deal with a perceived danger by fleeing from it or attacking it, even if those problems pose no real physical threat.

In preparation for the threat, various hormones (including adrenalin, noradrenalin and cortisol) surge through the body. This biological process raises blood glucose levels in order to increase one's energy level to help handle the threat. Since diabetic people have insufficient or ineffective insulin, the glucose piles up in the blood and can result in persistent hyperglycemia. This rise in blood sugar under mental stress almost always happens to people with Type 2 diabetes, although it may be mixed in Type 1 diabetics (i.e., blood glucose levels rise for some and drop for others). Physical stress (such as illness or injury), on the other hand, causes higher blood glucose levels in people with either type of diabetes.

Another way mental stress can raise blood glucose levels is by interfering with one's self-care. For example, any diabetic person (Type 1 or 2) who is under mental stress may drink more alcohol, use illicit drugs, exercise less, forget (or not have time) to check one's blood glucose, fail to plan proper meals, etc.

Mental Stress Reduction Methods
Learning to control one's mental stress is therefore very important. Some people find relaxation therapy helpful. Relaxation techniques may include breathing exercises, progressive relaxation, exercise, and positive thinking. Another way to reduce mental stress is to develop more effective coping skills. And still another is to change some of the things in one's life that are creating stress.
Stress reduction methods can be learned by reading self-help books and listening to recording, meditating, receiving psychological counseling, obtaining assertiveness training, joining a support group, etc. The benefits of stress reduction on lowering blood glucose are clearest with Type 2 diabetes since stress blocks the body from releasing insulin. But even those with Type 1 diabetes can benefit from reducing their stress levels because it can help them take better care of themselves.[1]
Helping people deal with their mental stress in diabetes health education programs is, therefore, another way to improve outcomes.

Personality Characteristics and Diabetes Management

How well a person manages his or her health, including diabetes and other chronic conditions, can be understood in terms of four health personality types: Activists, Wannabes, Inactives and Ignorers/Deniers. Each personality type has its own set of attitudes, beliefs, emotions, motivations, and behaviors.

Activists
Activists' attitudes about managing their health can be expressed by the attitude: "I believe I can do whatever must be done, and I'm willing to do it!" This positive, adaptive way of thinking reflects a joy of living and a willingness to manage one's health competently.
In terms of their character traits, Activists tend to be confident, motivated, aware, rational, and assertive. They seek knowledge about their health status and risks to help them make wise decisions and take responsible action. They try to understand how to avoid health problems and self-manage chronic conditions by using their knowledge to live healthily. Activists, therefore, are rational people who manage their physical and mental health using positive, proactive coping strategies, such as:

• Trying to understand what caused the problems and thinking of different ways to handle it.
• Determining what has to be done to manage their condition and then adhering to an effective plan of care.
• Talking to people about what they are going through and seeking advice or help.
• Viewing their health problem as something that helps them change or grow in a good way.
• Rationally accepting that their condition cannot be cured, which minimizes their emotional distress while motivating them to do what is necessary to avoid complications.

The more a diabetic person's character traits resemble an Activist, the more likely he or she is to manage the condition effectively.

Wannabes
A second group of individuals is the "Wannabes" (want-to-be). Wannabes think and talk about improving their health and wellbeing, and are willing to learn about healthy living, but they never seem to act on it, or do so half-heartedly. This is because they tend to have attitudes and beliefs such as:

• "I may be able to do what's required to improve my health, but I'd rather not deal with it right now."
• "I'm not sure what to do."
• "I'm just not ready."

As a result, Wannabes tend to be aware—or are willing to be aware—of their health problems and risks, but they lack the self-confidence and motivation they need to actually do something about it. Their self-doubt and lack of drive may come from the belief that they may not be able to do things the way they should. This uncertainty, in turn, may cause them to avoid making decisions and changing their behaviors for fear of failure; they don't want to be ashamed or embarrassed if they try, but do not succeed.

Wannabes, therefore, tend to cope with their doubts and fears through avoidance. For example, they may:

• Try to feel better by doing enjoyable or interesting things, rather than focus on managing the health problem.
• Act as if there is no problem, or try not to think about it.
• Express negative emotions by yelling or crying, taking it out on others, or avoiding certain people, rather than doing something constructive.
• Hope a miracle will somehow make things better or that one's wishes or prayers would be answered, rather than gaining knowledge and self-managing their health problem.
• Resign themselves that nothing can be done, even though this is an erroneous assumption.

While some of these coping strategies may alleviate their emotional distress temporarily, it is a maladaptive in the long-term since it fosters procrastination. Their inaction, in turn, allows their health to deteriorate. Nevertheless, there are several positive aspects of the Wannabe personality.
Since Wannabes think and talk about improving their health and wellbeing, they may be willing to participate in a whole-person diabetes health education programs that help them gain knowledge about their health problems and risks, as well as help them understand how to manage their diabetes. And they may be agreeable to wellness coaching and counseling offered through the program, which focuses on overcoming their self-defeating psychological obstacles and developing more adaptive coping strategies. Useful health information technologies would also help them gain the knowledge and skills they need. The goal is to help them become more like the Activists, so they will be motivated, capable, and psychologically prepared to manage their diabetes.

Inactives
A third personality type is the "Inactives." They think about their health on occasion, but do not believe they should or can do anything to manage their diabetes. This is because they tend to have attitudes and beliefs such as:

• "I doubt I'll be able to do what's required to improve my health and prevent complications, so why even bother."
• "I don't deserve to be sick…it's not my fault…so why should I have to be the one to do anything about it"—or—"I do deserve to be sick…Illness is my punishment…I'm just getting what I deserve."

Inactives, therefore, doubt that they can deal effectively with their health risks and problems. Some of them also believe they do not deserve what has happened to them, which makes them feel resentful and angry. The mental stress this causes not only distracts them from focusing on constructive health improvement activities, but it can actually raise their blood glucose levels as discussed earlier. Some Inactives, on the other hand, may believe they deserve to be sick due to self-loathing, or there is no hope and they are doomed.

The result is that the Inactives, like the Wannabes, lack the self-confidence and motivation they need to improve their health and manage their diabetes. What makes Inactives less likely to change their unhealthy lifestyles is that:

• Their self-doubt is stronger because it comes from the belief that they are not able (rather than may not be able) to do what is necessary to manage their health effectively.
• Their inertia (inaction) may be exacerbated by (a) fear that they will be shamed if they try to manage their health but fail, (b) the belief that there is no good way to manage their health, and (c) despair related to the belief they deserve to be ill.

The end result is poor management of their diabetes.

The way Inactives attempt to cope with their pessimism, fear, anger, resentment, and despair is similar to the negative avoidance strategies the Wannabes use. And, as with the Wannabes, the maladaptive coping strategies of the Inactives may alleviate their emotional distress temporarily, but hurt them in the long-term since their inaction allows their health problems to worsen.
Nevertheless, since Inactives think about their health and wellbeing on occasion, it is possible for them to become more focused and motivated through the help of wellness coaching, counseling, and useful health information technologies. They may, for example, be willing to gain greater knowledge about their problems and learn constructive strategies for dealing with them. And they may be willing to get help to use the knowledge they gain to self-manage their diabetes by helping them:

• Overcome their inertia, changing their self-defeating psychological obstacles (including self-doubt, fear, anger and shame)
• Replace their negative avoidance-based coping strategies with the positive strategies of the Activists.

Ignorers/Deniers
"Ignorers/Deniers" just don't focus on their health. These people "close their eyes and ears" to information about healthy living. They refuse to acknowledge or accept they have health problems or risk factors; or they refuse to do anything about it. These maladaptive behaviors are a consequence of a self-destructive mindset that includes attitudes and beliefs such as:

• "I do not accept there's a problem with my health" – despite convincing evidence to the contrary.
• "I'm fine the way I am … It doesn't matter what others say" – even though their health is deteriorating, relationships are crumbling, and overall quality of life is suffering.
• "I'm different … I'm special … I'm not like those other people … Nothing's going to happen to me!" – false sense of security and invincibility.
• "I don't trust doctors" – an attitude based on gross overgeneralization.
• "Getting help is a sign of weakness ... A strong person handles one's own problems" – an irrational belief driven by pride and based on distorted measure of self-worth.

Ignorers/Deniers, therefore, differ from the other personality types in important ways. Following are some examples:

• The three other types of individuals think about their health and, when confronted with a health problem, many question whether they are able to do what is necessary to improve things, which may make them feel anxious due to self-doubt. Nevertheless, they may be willing to learn and act responsibly despite their anxiety and doubt. Many Ignorers/Deniers, however, are so terrified by the notion that their diabetes may lead to serious complications that they avoid thinking about their health—preferring, instead, to pretend everything is all right. As a result, Ignorers/Deniers may refuse to accept the reality of their situation, even when confronted with the threat that they are likely to die from their health problems, because such possibilities are just too painful to consider. Although this denial and self-deception may keep their fear in check for a while, their inaction and ignorance makes them very vulnerable to worsening health.
• If Ignorers/Deniers did think about their health, many would feel hopeless and helpless, believing they are incapable of managing their illness effectively. And those who portray an air of invincibility are likely covering up great self-doubt and fear; or they may even be delusional.
• Some Ignorers/Deniers may also be so distrustful of the healthcare profession that they won't even consider seeing a doctor, often until it's too late.
• While health problems may cause other personality types to become sad, or even depressed, for a time, they are able to get themselves motivated and begin to take constructive action because they want to live and be happy. Ignorers/Deniers, on the other hand, may be so lonely and depressed that they believe they have nothing for which to live. For them, the prospect of living longer in chronic emotional pain isn't motivating. This prevents them from having the drive and focus needed for constructive action.
• While other individuals are willing to get help when they need it, Ignorers/Deniers may have been so influenced by their cultures that they believe seeking assistance for personal problems is a sign of weakness.
• Unlike the other personality types, Ignorers/Deniers may have physical addictions or powerful psychological compulsions that prevent them from focusing on healthy living until they reach "rock bottom," which, unfortunately, may be too late.

What this means is that Ignorers/Deniers rely on some of the same maladaptive coping strategies as the Wannabes and Inactives.
Because these thoughts, feelings and reactions are so deeply ingrained in their personalities, getting through to Ignorers/Deniers is very difficult. However, all is not lost! Through wellness coaching, counseling, innovative self-help software, they may be influenced by the "reframing" methods discussed earlier.

Dealing with a person's lack of trust may require intervention by a wellness coach or counselor who takes the time to establish a close, positive relationship with the Ignorer/Denier, and who has the knowledge and experience to gain the person's confidence.
As for Ignorers/Deniers with addictions or compulsions, lengthy psychotherapy (and possible medications) may be needed before they acknowledge their problems and are willing to deal with them.

In diabetes health education courses, wellness coaches and counselor should begin by focusing on helping Ignorers/Deniers understand and reframe their maladaptive beliefs and attitudes. This will enable them to be more open to gaining knowledge and awareness of their diabetes. Innovative health information technologies that help focus and entice them to break through their negative mindsets and resistance would also be helpful. Once Ignorers/Deniers stop deceiving themselves, have a stronger desire to live and enjoy life, gain trust, are more aware and open to receiving help, and are no longer controlled by their addictions/compulsions, they can be treated as Inactives or Wannabes as appropriate.

In my next post, I discuss the role of health information technology supporting innovative diabetes health education programs.

References
American Diabetes Association. Stress. See http://www.diabetes.org/type-1-diabetes/stress.jsp
Patrick Ober, M.D. How Does Stress Affect Diabetes And How Can I Better Manage Stress? See http://abcnews.go.com/Health/DiabetesLivingWith/story?id=3845034