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 affect 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:
And all of these disturbances are linked to one's physiology, including one's hormones, brain, genetics, etc.
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 the four types of psychological information above with biomedical (biological/physiological) information is also related to the whole-person perspective of human health because it helps us understand the:
Examples of this mind-body connection include:
Integrating psychological and biomedical to understand the whole-person is important, therefore because, for example:
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
Thus, there are many reasons to integrate psychological with biomedical information for a whole-person perspective.
Whole-Person Health Information Technology for the Consumer
Health 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 are 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:
Protecting the Privacy of Personal Health Information
Although 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:
Evolving the First PHPro
I 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 unique 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 developing 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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