NAMI of Indiana Conference
I just returned from a wonderful conference about mental illness at NAMI of Indiana. NAMI—the National Alliance on Mental Illness—founded in 1979, is the nation's largest grassroots organization for people with mental illness and their families with affiliates in every state. Their mission is "to eradication of mental illnesses and to the improvement of the quality of life for persons of all ages who are affected by mental illnesses" by providing support, education, and advocacy. One memorable event was a poignant and enlightening keynote address about the journey to recovery from schizophrenia by NAMI board member Frederick J. Frese, Ph.D.
The session in which I participated was a panel discussion about health information technology for persons with mental health problems. Following is an expanded version of my contributions.
Understanding Mental Health Problems from a Whole-Person Perspective
Mental health problems range from severe psychiatric disorders (such as schizophrenia, bipolar disorder, PTSD, etc.) to a very wide range of less severe psychological disorders adversely affecting one's social and emotional life (such as phobias and anxiety disorders, depression, eating disorders, compulsions, family strife, learning disabilities, substance abuse, and numerous other problems).
Viewed from a whole-person perspective, all mental health problems can be understood by grouping them into these four categories of disturbance:
- Disturbances of sensory perception. This refers to hallucinations, such as seeing or hearing things that do not exist.
- Disturbances of cognition (thoughts, attitudes, beliefs). This ranges from psychotic delusions and thought disorders to neurotic, irrational, self-defeating ways of thinking that just about everyone has at times (such as exaggerating things, being narrow-minded, having faulty opinions, making poor judgments, etc.)
- Disturbances of emotion. This refers to excessive, deficient, and inappropriate emotions, including emotions that feel good for a while (e.g., manic euphoria), painful emotions (e.g., deep depression and chronic anxiety), and lack of emotion (alexythimia).
- Disturbances of behavior. This includes irresponsible and self-destructive actions (e.g., not managing one's health, abusing drugs or alcohol, and attempting suicide); excessive passivity/avoidance; excessive aggression; etc. Such behaviors tend to be closely related to one's perceptions, beliefs, and emotions.
Since everything in interconnected, it's why I call it a whole-person perspective.
Benefit of Integrating Psychological with Biomedical Information
The benefit of integrating these four types of psychological information (above) with biomedical (biological/physiological) information is also related to the whole-person perspective of human health. This is because it helps us understand the:
- Interplay between biomedical and psychological factors
- Link between mental/emotional/behavioral problems and many physical problems.
- Disturbances of physiology that are related in some way to situational/psychological conditions, but without actual permanent end-organ damage, such as migraines, functional bowel disease and types of chronic pain
- Disturbances where actual physiological and psychological pathologies are evident, such as hypertension, peptic-ulcer disease, hyperthyroidism, asthma and chronic skin disorders
- Serious physiological disorders that tend to appear or flare up with significant life changes and stress, such as disturbances in autoimmunity
- Mental health problems caused by biomedical factors such as delirium, dementia, organic hallucinosis, and organic delusional, mood, personality and anxiety syndromes
- Illnesses such as coronary heart disease and cancer that may be helped with adjunctive treatments which promote changes in patients' behaviors (e.g., improve eating, sleeping, and exercise habits) and psychological states (e.g., reducing resentful anger and stress-proneness)
- Emotional difficulties often associated with medical illnesses and procedures such as AIDS, bone marrow transplants, severe burns, heart or liver transplants, end-stage kidney disease entailing dialysis, hip fracture, open-heart surgery, and plastic surgery
- Maladaptive behaviors and attitudes that have obvious deleterious health effects on oneself and/or others, such as substance and alcohol abuse, anorexia, bulimia, excessive eating, smoking, unsafe sex, recklessness, suicidal tendencies, and abusive behavior toward others.
- People with severe mental illness are more prone to die from things such as heart disease and complications from diabetes due to smoking, poor diet, inactivity, failure to follow doctor's orders, etc.
- Up to half of all primary care physicians' cases are either accompanied by, or constitute, psychological problems.
- Psychological problems cause, exacerbate, or impede healing of many physical illnesses.
- Psychological and psychiatric treatment mental health problems helps improve people's physical health and thus reduces overall medical costs.
- People who manage their physical and mental health more effectively are more focused and productive, tend to live longer, have a better quality of life, and enjoy a greater sense of wellbeing. [See this link for more]
It is important for people with mental health problems, along with their caregivers, to understand how specific maladaptive cognitions and emotions lead to irresponsible behavior and worsening health. And they should be helped to use knowledge of the whole person to make positive changes in their lives by making more informed decisions and acting more responsibly. This includes adhering to evidence-based treatment plans designed to reduce symptoms and improve overall health & wellbeing. It also includes better "self-maintenance" (i.e., taking better care of oneself), which promotes wellness by (a) avoiding new health problems and complications and (b) preventing existing chronic conditions from worsening.In addition, since side-effects from psychotropic (and other) medications can be annoying, debilitating, or even deadly, it's important to know how any medication being taken may
be causing or exacerbating a person's physical and psychological symptoms.
Thus, there are many reasons to integrate psychological with biomedical information for a whole-person perspective.
Whole-Person Health Information Technology for the ConsumerHealth information technology focused on the whole-person must take into account all aspects of an individual. And if it is designed for the consumer, it must useful and inexpensive. So, a cost-effective health information technology able to manage a huge diversity of information over a person's entire lifetime, and to delivery this information in an understandable and helful manner is essential.
The type of technology I'm describing—a Personal Health Profile (PHPro) —is related to Personal Health Records (PHRs) since it is for the consumer, as opposed to Electronic Medical Records (EMRs), which are designed for the healthcare professional. There are important differences, however, between a PHR and PHPro:
- A PHPro is more comprehensive (complete) than a PHR. PHRs typically track immunizations, allergies, lab tests, medications, doctors' information, office visits and hospitalizations, physical exams, living wills and advance directives, insurance information, emergency contact information, and other similar information. A PHPro, on the other hand, extends the information it manages to include detailed psychological information about a person's emotional state, along with a wide range of behaviors, perceptions, and cognitions. It also adds a person's physical symptoms, risk factors, wellness activities, coping strategies, motivation and confidence, environmental influences, and more. In other words, a PHPro truly focuses on the whole-person by pulling together all the information related to the interplay between mind, body, emotions, behaviors and environment. As such, a PHPro is more like a personal health encyclopedia due to the depth and breadth of the information it contains.
- The PHPro is also more useful. Now I'm not saying PHRs aren't useful; they do manage certain health information, and may allow health data to be exchanged. But a PHPro goes well beyond accessing and sharing basic health information. That's because it also focuses on enabling deep self-understanding and promoting responsible action by increasing awareness and better self-care. It does this by providing actionable information & instruction that help the person gain practical knowledge and use it to prevent physical and mental health problems, as well as to move toward healing and recovery. How does a PHPro do it? By, for example:
- Comparing people's symptoms to the possible side-effects of their medications, identifying the symptoms that may be caused or exacerbated by each medication being taken, and advising them what to do about it.
- Using interactive, personalized, coping and problem solving guides, including ones that help people deal with stressful situations through a systematic process of evaluation and guidance, such as the process depicted in the "Stress and Coping Process Model" flowchart overview at the end of this post.
- Giving people constructive feedback in ways that inform and motivate.
- Providing warnings, alerts and reminders.
Protecting the Privacy of Personal Health InformationAlthough a great deal has been done in recent years to improve the security of information stored in remote databases "in the cloud," (i.e., in the Internet), many people feel more confident that their personal health information would be kept private if they could:
- Input sensitive information about their mental and physical health into their own computers and have it stored in a securely encrypted data file that stays there locally, in their computers, rather than in a remote database containing health records of thousands or millions of other people …
- And at the same time, if they had the option to retrieve basic and less sensitive medical information from remote places (such as their doctors' EMRs, Google Health, Microsoft Health Vault, etc.), and have this information added automatically into their locally stored data file …
- And, when it comes to sharing their information, if they could select the specific pieces of data they wish to share and the specific people they authorize to receive it.
Evolving the First PHProI envision that most PHRs will evolve into whole-person focused PHPros over the next few years. Currently, there is only one PHPro; it is our PH Profiler™, a next-generation software tool we've been developing off and on since the early 1980's. I have written about the PH Profiler on this blog in a series of posts starting at this link. It is currently being prepared for next-stage beta testing, and we are forming alliances with universities and consumer organizations to evaluate it and provide feedback that will guide its continued evolution.
I say this because people with special needs—including people with severe mental illness, the elderly, and persons with physical disabilities—would benefit from specially constructed instruments that meet their particular needs. For any consumer-facing information technology tools to be truly useful, grassroots organizations serving these individuals, such as NAMI, must have considerable input into their development. That is why I am committed to working closely with such organizations in order to develop multiple versions of the PH Profiler, which are tailored to their needs.
And collaborating with academia is so important because researchers are the ones who develop evidence-based guidelines that promote high-value care for the consumer. Being able to provide researchers with a wealth of aggregated, de-identified data (to protect everyone's privacy) about symptoms, causes, treatments and outcomes (results) provides and ongoing "feedback loop" that generates ever-increasing knowledge, which leads to ever more cost-effective care through better decision support systems (see this link for a continuous quality improvement feedback loop).
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