Care Quality and Cost: Why Poor Quality can Cost More

Two recent posts by Niko Karvounis (see this link and this link) discuss critical issues concerning healthcare quality (care effectiveness/results) as it relates to healthcare costs. I, too, have written extensively (e.g., see this link, this link, and this link) about the challenge of measuring and improving quality and controlling costs, and will now share some thoughts in the context of her interesting posts.

Her first post is about the history of managed care. It discusses the managed care model's original vision, early stages of growth, the trouble it had managing quality, the shift from non-profit to organizations driven by the profit-motive, the focus on managing costs alone, the fallout, and its decline. The second post, which focuses on the challenge of healthcare quality assessment and improvement, overlaps the first in that failure to deal effectively with quality-related issues was a key factor in managed care's demise. It goes on to discuss how low care quality is contributing significantly to the high cost of American healthcare and poor health of its citizens, but is not getting the attention it deserves for some very interesting reasons, including patients' inability to determine what constitutes high-quality care.

These posts reinforce what I've been saying for the past two decades: Unless we make healthcare quality a priority, cost will continue to spiral out of control and the U.S. continues to deliver inferior care compared to many other industrialized countries. After all, low quality means excessive errors and omissions, as well as less effective preventive care and treatment of existing conditions. According to the Business Dictionary, the cost of poor quality is the cost of 'not doing it right the first time,'" which translates to fix then fix it again when it breaks. In healthcare, this waste, redundancy, and ineffectiveness means increased cost to the patient (and society), not to mention increased risk of harm from multiple unnecessary procedures, adverse affects of medication changes, infections from longer hospital stays, progression of diseases caused by delay in receiving the right care, and so on.
High quality, on the other hand, means keeping people healthy through good well-care (including prevention and effective self-management of chronic conditions), as well as the timely and efficient treatment of health problems with effective sick-care leading to more rapid recovery and lass chance of relapse.

Improving care quality starts with doing an effective job measuring quality, as well as promoting decisions and actions that continually improve quality.
There are several ways to measure the quality of care.

• Comparative-effectiveness research, which focuses on comparing the effectiveness of different preventive and treatment approaches, does not take cost into consideration.
• Taking both cost and quality into account, means focusing on care value, which is what cost-effectiveness research does. One way to deploy this is the strategy is to do what Great Britain's National Institute of Health (NIH) does through use of the Quality Adjusted Life Years (QALY) method. The QALY method is used to determine if a healthcare treatment is worth the cost. Another method is to determine the treatment procedures and medications that produce similar outcomes, and then select the ones that cost the least, but generate results as good as the more expensive ones.

Once we evidence about the quality and cost of competing methods, we've got to determine how to analyze, package, and disseminate such data as useful and understandable information that guides decisions and actions in ways that control costs and lead to better outcomes. For more, see this link about improving care quality with evidence-based practice guidelines and this link about using evidence-based decision systems, both on our Wellness Wiki.

Open Source Software and Patents: An Uneasy Journey of Discovery and Understanding

This post and its comments have been moved to http://opensourceandpatents.blogspot.com/2008/09/open-source-software-and-patents-uneasy.html

Defining and Treating the “Whole Person”

In this post, I discuss how the four interacting components of a "whole person"—one's mind, body, emotions, and "spiritual force"—affect human health and wellbeing.

Let's start by considering two articles published in the past few months about mental illness, which bring to light the staggering costs of not treating psychological problems (i.e., problems rooted in the mental and emotional components) because our society consider physical (i.e., body) health to be much more important than psychological health.

In May 2008, an article in Time titled "Tallying Mental Illness' Costs", reported that our country loses about $500 billion a year on mental illness and addiction problems due to lost earning potential, social security payments, homelessness, incarceration, and treatment. Only 60% of Americans with a mental disorder got no treatment for their ailment at all, and only 6.2% of current U.S. health care spending is devoted to the treatment of these disorders. And since these figures are based largely on 2002 numbers, the actual figures are probably greater due to the Iraq war (e.g., on PTSD and brain injury).

Last March, a New York Times article, titled "The Murky Politics of Mind-Body" discussed scientific evidence showing that mental (psychological) problems such as severe depression, addiction, and schizophrenia have a physiological base, including brain abnormalities, problems in brain circuitry, and genetic factors. In the past I've written about this issue at this link to the Wellness Wiki.

So, is there really a connection between mind, body, and emotion, and physical? And where does "spirit" fit in? Well, the following Venn diagram depicts my understanding:



The circle to the left, labeled "Mind," refers to a person's mental functioning, which includes one's thoughts (cognitions), perceptions, beliefs, attitudes, knowledge, imagination, etc.

The circle to the right, labeled "Body," refers to a person's physiolocial functioning, which includes one's voluntary behaviors and involuntary reactions, as well as the functioning of all bodily systems (i.e., the muscular, skeletal, cardiovascular, respiratory, digestive and urinary, reproductive, glandular (endocrine and lymphatic), and nervous system (which includes the brain and sensory organs).

The section in the middle, labeled "Emotion," refers to a person's feelings, mood, affect, which includes both positive emotions (e.g., joy, happiness, love, contentment, etc.) and negative emotions (e.g., depression, anxiety & fear, anger, guilt, shame, jealousy, envy, disgust, etc.). There are several reasons why I used the overlap between mind and body to depict emotion:

• Our feelings (emotions) are created by the interaction between our thoughts (mind) and physiology (body). In fact, one of the most effective forms of psychological treatment, cognitive-behavioral psychotherapy, focuses on modifying a person's thinking (beliefs) in order to lessen one's negative emotions and stress, which then leads to more adaptive behaviors and increased overall health.


• The physiology of emotions is the connection between emotions and body, that is, how our body systems create our emotions, and how our emotions affect our body. The field of psychoneuroimmunology, for example, is demonstrating that stressful life events can adversely affect the immune system. Other researchers are identifying "coronary-prone behaviors" such as feelings of insecurity and a perceived lack of self-efficacy. Still others are finding a connection between optimism, coping skills, and physical health. For example, researchers found that depression is a precursor to heart disease, with certain depressed patients being 50 percent more likely to develop or die from heart disease than those without such symptoms, even though they had no prior history of heart disease. Depression, therefore, likely affects not only the mind but also physical health by being linked to increased blood pressure and abnormal heart rhythms, as well as chronically elevated stress hormone levels, which can increase the heart's workload. And fear can lead to denial and avoidance, resulting in worsening health, as I discussed at this link.

Note, however, that this intersection between mind and body actually includes more than emotions, such as:

• The effects of our beliefs on our physical health, which I've discussed this in an earlier series of blog posts starting at this link.


• The connection between thinking and doing, i.e., how our thoughts lead to specific actions, which may be healthy and adaptive or unhealthy and maladaptive. In healthcare, this connection includes your ability to describe your symptoms to your doctor, your doctor's ability to examine your body and diagnose a problem, as well as your ability to understand how to manage chronic conditions.

Now to the large oval—the "Spiritual Force" (aka "life-force," "inner-self," consciousness, "soul," "qi/chi")—which encompasses the whole person … mind, body, and emotions. From a philosophical (cosmological) perspective, the spiritual force enables us to have a mind, body and emotions. In other words, this cosmic energy gives us the ability to be aware, to sense and perceive the world around us. It allows us to create, express ourselves, feel, have intuition, remember, speak, move, think, grow, etc. It's the force that builds our bodies from genetic information, and that transforms the electrical activity in our nervous systems into thoughts, emotions, and behaviors. At its most basic (and abstract) level, the spiritual force can be thought of as life itself, which gives us the potential to develop our minds and bodies. Some might even say it is a "piece of God" within each of us.

While certain Eastern (e.g., traditional Chinese) medicines attend to the spiritual force when treating patients, Western medicine mostly ignores it because this force cannot be observed or measured scientifically (see this link for a comparison of Eastern and Western medicine, and this link for more about complementary and alternative medicine).

So, is there a meaningful connection between the three components of the whole person—mind, emotions, and body—in which each components affects the others? YES!

Is there real value in treating the whole person by seriously considering the interactions between these three components? YES!

And, if you want to get philosophical, is it reasonable to conclude that a spiritual force gives rise to all thoughts, feelings, and physiology? YES! As such, might it be beneficial to a better understanding of how this force can be applied to healthcare in the Western societies? YES!

International Collaboration: SaaS and PHRs

I've been collaborating with a fine group of people from Brazil who are organizing a seminar for October 1, 2008 in Brazil, which focuses on increasing understanding of two key technologies--Software as a Services (SaaS) and Personal Health Records (PHRs)--their evolution, and how they can be used together to improve people's health.

Information technology companies, together with colleagues from the University specializing in healthcare and related services, will demonstrate the potential strategic value of using PHRs and SaaS. This international effort, which focuses on Information Systems Action Research, intends to stimulate meaningful interaction between healthcare providers, scholars and technicians since it aims to promote innovations in networks and organizations. The seminar seeks to bring together professionals from around the world who are interested in collaborating in research and development efforts.

I will be presenting a video in which I share a vision of the future of the PHR and discuss where it can intersect with SaaS technology. Other presenters include a SaaS vendor (Coghead.com) and professors from Brazil and other countries who are involved in health-related activities, including chronic conditions and telemedicine.

To view the seminar's flier, go to this link.

Is an Entirely New Model of Care Needed for Chronic Conditions?

There was a very interesting conversation last month at New Talk, in which national healthcare leaders from across the country discussed whether an entirely new model of care is needed for managing chronic health problems. It was summarized this way:

Why overhaul chronic care delivery? For starters, about 75% of health care spending goes toward chronic conditions, and our panelists agreed that the current system is plagued by waste and poor quality.

What can America do about it? Panelists suggested eliminating one primary villain-the fee-for-service approach-in favor of the medical home or other new models that offer coordinated care and continuity of providers. This new paradigm opens the door to a patient-provider relationship marked by a two-way sense of responsibility.

Everyone recognized the potential barriers to implementation: …[including] a "multi-stakeholder approach" as an antidote to the stifling influence of interest groups; [and] regulatory waivers … essential to clearing the way for innovation.

Other challenges brought to the table include: creating incentives for engaging patients in their own health, developing a nationwide system of health care IT, and insuring that new programs dovetail into the larger system of acute and preventative care.

Other tactics proposed by the participants include:

• Rewarding providers for delivering high quality care with minimal waste
• Making tough choices about reducing spending on end-of-life care
• Promoting the use of electronic health records
• Establishing a national center for effectiveness research
• Focusing on improving population health
• Getting patients more involved in managing their own health, including focusing on prevention
• Providing some form of case management.

While their recommendations are consistent with the Wellness-Plus Solution presented on our Wellness Wiki, several key elements were missing, including the promotion of:

• Personalized care [see this link]
• Next generation Personal Health Records [see this link]
• Home care and Telemedicine [see this link]
• Diagnostic decision support systems [see this link]
• Research and delivery of cost-effective complementary and alternative care [see this link]
• Biopsychosocial healthcare that focuses on the whole person and the mind-body interaction [see this link]

I applaud conversations like this because they bring to light how bad our current healthcare system is and how much has to be done to fix it. Yes, we do need radical reform and it's good to hear people talking about it!

The PHPro 2.0 Beta Due for Release in February 2009

I thank everyone who tested the Personal Health Profiler Alpha and provided helpful feedback. I am now working on the Beta version, which will be available for public review in late February 2009. It is the first personal health application to support the Whole Person Integrated Care (WPIC) model.

As with the "Alpha version," the Beta will also be a prerelease version, which is being offered for testing and review purposes, as well as to promote collaboration with companies and individuals able to help expand its contents and evolve its functions. All you need to use the PHPro is Microsoft Excel 2000 or newer.

The unique features and benefits included in this version are:

• A comprehensive self-assessment questionnaire that speeds knowledge-building through a patented process that uses sophisticated branching logic to administer only the assessment items relevant to an individual; it includes a health risk assessment and much more
• Interactive reports providing an integrated view of a person’s biomedical and psychological (body-mind) information
• Personalized desktop portal for easy access to relevant information on the Internet and elsewhere
• Problem-management guides providing coping and problem-solving tools that include gateways to focused information related to troubling issues a person is facing; this process helps avoid overload by supplying information and interpretations in the context of real-life situations
• A method for indexing and categorizing every conceivable piece of health-related information using a numeric classification system similar to the Dewey Decimal libraries use to organize books
• A way to give the individual complete control over the data by enabling him/her to determine whom (if anyone) has permission to view each particular piece of information
• Change tracking in which all data updates and corrections are managed and available for review.

The Beta version expands the Alpha's functionalitiy to include the following:

• Identifies physiological (bodily) and psychological (emotional, cognitive, and behavioral) symptoms that may be caused or exacerbated by medication side-effects, along with recommendations (and time-based exclusions)
• Identifies existing drug-drug interactions and recommendations
• Shows a history of changes in one’s physical and psychological signs and symptoms in tables and graphs
• Imports data from XML-based Continuity of Care Records/Documents, as well as web-based data input forms, and incorporates them into the Profile report
• Enables a “granular” level of control for authorizing sharing of one’s health information
• Automatically retrieves selected documents stored in one’s own computer, as well as linking to web sites
• Offers more extensive “information therapy” (i.e., educational/instructional materials).I'm very confident you’ve seen nothing like this anywhere!

If you are interested taking a test drive, would like an opportunity to offer your input to help guide the development of subsequent versions, and/or might be interested in incorporating your health information technology tools and materials – please go to the PHPro forum at the link below. After registering on the forum, you will have access to the fully a functional software program and will be able to generate you own personal health profile on your computer. You will also be able to post questions, offer comments, discuss your wish list, and communicate with potential partners.

Interesting article about Excel

An recent article by ZDNet--Taking on Excel, and Winning, Sort Of--discusses the value of using Excel spreadsheets for a variety of applications. It's ubiquity, ease of use and functionality are reasons given; here's a quote: "...like the floppy disk icon that never dies, the Excel spreadsheet lives on and on...This ubiquity and staying power says volumes about what users want...and their continued votes in favor of a 20-plus year old user experience should give everyone who believes that the best technology deserves to win a deserved pause. Excel works well-enough for millions of users all day long..."

Following is the comment I posted:

As a self-taught programmer, I’ve been building spreadsheet applications for nearly 30 years--from Visicalc through Lotus 123 and Excel. Many of the criticisms of Excel are due to people’s ignorance of what its engine can do; mathematical computations are just a small part of its capabilities. By combining spreadsheet formulas with VBA macros and Active-X forms, it is also quite competent at database queries; XML consumption; logic-based analysis; pivot tables enabling multidimensional reports; parsing and concatenating text; dynamic presentations that include not only charts and graphs, but also a wide variety of pictures/images; and on and on.

In fact, I've developed numerous macro-driven Excel-based applications in which users wouldn't even realize it's a spreadsheet. And with the advent of Excel 2007, it’s become very a secure technology, which is also able to serve as a large flat file database (although it’s not meant to replace all databases).

I’ve also developed a patented process and use Excel to implement it. This discontinuous/disruptive technology enables loosely coupled peer-to-peer networks of publisher-subscriber nodes to share massive amounts of information with extraordinary efficiency. One such Excel-based application, which I’m about to release for public review, is a unique personal health record. Another is a unique continuity of care record software system, which I’ll be offering to the open source community. A common comment from people is “I can’t believe Excel can do all this!”

Updates: Receiving the Personal Health Profiler / Open Source Progress

The Personal Health Profiler™ (PH Profiler™) will be ready by the end of this week. It runs on Excel 2000 or newer. Click this link for a description of the software.

The PH Profiler is now ready for public review for a limited time. Click here for more.

And here's an update on our open source progress. We've decided to submit to the open source community our CCR+™ prototype within the next two weeks. This interoperable continuity of care record not only manages industry standard data sets and complies with all data standards, but it includes two patented components that enables it to:

• Evaluate in real time abnormal lab test results and symptoms against prescribed medications to (a) identify possible adverse side effects and (b) associate psychological (emotional, cognitive and behavioral) symptoms with biomedical problems
• Display comprehensive blood test results in the most clinical useful format
• Use data files and customizable report templates made of spreadsheets that are able to give all clinicians information tailored to their specialties.

More to come.

Brief Update

I've not been posting to my blogs for the past two weeks because I've been working round-the-clock to get the Personal Health Profiler ready for viewing by next week. In addition to handling a much greater depth and breadth of data than any other personal health record, and giving the person complete control over one's personal information, the PHPro is the only health information technology to offer a Problem Management Guide (PMG). The PMG takes the person's answers to a series of probing questions and automatically:

• Prioritizes the individual's primary life issues in terms of how much problem and emotional distress they cause
  
• Assesses and analyzes a person's coping strategies (how one tries to deal with one's problems)
  
• Shows the connection between one's thoughts/beliefs and one's emotional state
  
• Interprets all this information to foster self-understanding.

After answering a comprehensive set of questions, the person simply double-clicks a button next to the problem area s/he wants to address, and the PMG steps him/her through a series of steps based on a "transactional problem solving" methodology. This process involves helping the person cope with both changeable (controllable) and unchangeable (uncontrollable) situations by reducing one's emotional distress through cognitive restructuring (i.e., modifying one's way of thinking about and reactions to certain things). It also helps the person determine if a problem can be changed, and if it can, it guides the individual through a structured problem solving process that includes solution development, evaluation, implementation, and outcome assessment.

During each step of the coping and problem-solving processes, the person has the option of entering a "gateway" to personalized information and tools from any useful sources. The gateway is a limitless portal designed to grow and evolve continually through massive collaboration. My goal is work with others to expand our information library and tools, so they are tailored precisely to a person's physical and psychological health needs, interests and preferences. This simplifies navigation dramatically and presents materials customized to the person's comprehension and knowledge levels.

Questioning Open Source Motives: Can a Corporation be Virtuous?

This post and its comments have been moved to http://opensourceandpatents.blogspot.com/2008/09/questioning-open-source-motives-can.html

Personal Health Profiler™: Part 3

An article last week in ZDNet Healthcare, titled Creating personal health record value from the bottom up, focused on my recent posts about our Personal Health Profiler™ (PHPro) system. It describes the PHPro as a spreadsheet-based system in which “data is nested so you can drill into the detail. Links and databases can be added automatically so that when someone clicks on a condition the data says they have, they get real advice on what to do. … The goal [is] to link personal data to actionable information so you become a better-informed health consumer.” That’s true.

The article then goes on to say that a major difference between the PHPro and current day personal health records (PHRs) is that we build the PHPro “from the bottom-up, rather than the top-down” and, historically, “…top-down solutions usually get built-out first, because there’s motivation to build them. And bottom-up solutions challenge them later.” While one could argue that the PHPro came first (since its development began over two decades ago), this notion of a top-down/bottom-distinction caught my attention.

Top-Down / Bottom-Up

According to Wikipedia: “Top-down and bottom-up are strategies of information processing and knowledge ordering, mostly involving software … A top-down approach is essentially breaking down a system to gain insight into its compositional sub-systems…[that are] then refined in yet greater detail…until the entire specification is reduced to base elements. … A bottom-up approach is essentially piecing together systems to give rise to grander systems. … In a bottom-up approach the individual base elements of the system are first specified in great detail. These elements are then linked together to form larger subsystems, which then in turn are linked, sometimes in many levels, until a complete top-level system is formed. This strategy often resembles a ‘seed’ model, whereby the beginnings are small but eventually grow in complexity and completeness.”

Based on these definitions, a top-down approach to PHR development focuses on defining the main components of the overall system and then defining the smaller parts needed to make it work. A convenient way to do this is by examining existing top-down PHRs (and even electronic medical records) to determine what data are typically collected, what user interfaces are typically used, what types of reports are typically generated, what technology standards are typically followed, etc. Differentiating one PHR from another can be done by making modifications to certain parts. The result is that all top-down PHRs closely resemble each other and evolve gradually over time through series of relatively minor changes. In other words, they are “continuous” (“non-disruptive”) technologies offering small incremental improvements to the status quo.

A bottom-up approach to PHR development, in contrast, is a process focusing on defining the fine details first, and then building up from those details to create the complete system. For me, the bottom-up process went something like this:

• The first thing we did was to research, define, organize (categorize), and compile lists of data likely to be necessary for understanding understanding the whole person fully. I reasoned this would be an ongoing process since these lists would have to evolve considerably over time as health science generated new knowledge and healthcare professionals across all healthcare disciplines provided their input. That is, before architecting the PHPro’s technology, I wanted to be sure that whatever the technology would ultimately be, it must be able to:
• Collect every possible piece of information that could help gain deeper knowledge and understanding of how a person’s mind (psychology), body (physiology), and environment (both social and physical surroundings) interact and affect one’s physical and mental/emotional health and wellbeing. The biggest challenge here, by the way, was in the defining the information required for comprehending a person’s psychosocial and mind-body functioning, since understanding a person’s thoughts, emotions, behaviors, social interactions, and environmental influences--and how this all relates to one’s biology and physical health--requires a great deal more information than focusing solely on understanding a particular medical condition.
• Enable people to gain and use this knowledge and understanding to help prevent and treat biomedical, psychological, and mind-body problems.


• As these lists evolved, we began determining how best to present this information, through interactive reports, in ways that increase awareness and understanding, and help support decisions. We reasoned that there would have to be a wide variety of reports, each focused on the knowledge needs and decision needs of people with different roles and responsibilities. That’s because the knowledge needs of people trying to understand and receive support for dealing with an existing health problem or personal life crisis differ significantly from what different healthcare professional needs. In other words, there are big differences in the information needed by a consumer interested in self-help for a stressful life event, a person who is working with a wellness coach for help managing a chronic condition through lifestyle change, a patient looking for guidance in deciding on the best treatment option for a medical problem, a primary care physician trying to coordinate a patient’s care, a medical specialist (e.g., cardiologist or oncologist) treating a particular physical condition, a mental health professional treating a behavioral problem, etc. Thus, the reports generated by the PHPro would have to come in a wide variety of types that would have to evolve considerably over time.
• As the reports were being defined, we began developing technical software processes for collecting, storing and distributing the information in a secure and cost-effective manner, and for generating the reports described above.

One thing this bottom-up approach taught me early on is that the data collected, reports generated, and technical methods used must be able to evolve continually as health knowledge grows, new technologies emerge, and standards change. That meant the PHP had to be a very flexible and adaptive system.

Furthermore, since I began this process in 1981, there was no Internet, the first personal computers were just coming to market, and it was decades before the ideas of a PHR was even being discussed in the healthcare industry. That meant we had to discover an original way to build the PHPro. It also meant that we had to find a very cost-efficient way to operate the system since, back then, computer memory, speed and data storage capacity were tiny compared to today.

Having been intrigued by spreadsheet’s power, efficiency, ease-of-use, and “plasticity” (like molding clay into different forms), we began building the PHPro using spreadsheets in unique ways.

Disruptive Innovation

I've referred to the PHPro as a “discontinuous/disruptive” innovation, This means it uses a radically different technological approach to developing personal health records, compared to existing dominant technologies or status quo products in a market. Unfortunately, disruptive innovations often go unnoticed, or they are ignored for many years. When they are finally recognized, businesses with a stake in maintaining conventional technologies tend to see them as threats and try to lock them out of the market. In fact, my idea of using spreadsheets as the foundation of a PHR application has been ridiculed and dismissed by conventional software developers in the past. This could be because they don’t realize how spreadsheets can be used in novel ways, they are fearful they might lose business to a simpler and less expensive technology, they don’t want to learn a new of developing software, or for other such reasons.

Nevertheless, I’ve persisted … and here’s why …

Why Spreadsheets?

There are many huge advantages to using the spreadsheet for PHRs and other health information technologies, as long as you know how to handle the challenges. Spreadsheets, after all, have been around for decades, making them one of most sound and solid software ever created. They are efficient, low-cost, easy-to-use, and infinitely flexible (i.e., they can be molded into unlimited types of applications). In addition, spreadsheets have powerful data collection and sharing, computation, model-building, reporting, and automation capabilities. In other words, they offer a quick and easy way to obtain, organize, synthesize, analyze, evaluate, distribute, and display information.
On the down side, spreadsheets must be examined and controlled in order to prevent errors and unauthorized changes. The PHPro does all this in innovative ways.

One thing most people fail to realize is that a spreadsheet is much more than just a big electronic grid with charts. The truth is, a spreadsheet application has three major components:

• One component is its electronic user forms that enable a person to input information manually, displaying it, and update it.
• A second component is its code modules (“macros”), which automate processes for such things as:
• Obtaining data from databases (i.e., running “queries”) and sending data to databases
• Extracting data from data streams (transmitted packets of data), from XML documents, and from other text-based files using custom “parsing” modules
• Performing computations
• Formatting (“rendering”) information for presentation
• Transmitting information over the Internet (e.g., using encrypted e-mail attachments)
• Connecting to other software applications
• and more.
• The third component is its sheets (grids) of interconnected spreadsheet cells that work in conjunction with the code (macro) modules. A spreadsheet cell is an electronic “container” that stores, uses and displays numbers, text (up to 10 pages worth), pictures, hyperlinks (to documents and the web sites), mathematical and logical formulas, and more. In addition, the contents of any cells can be copied, shared, moved, sorted and filtered, hidden or displayed, and formatted in many different ways (e.g., the color, type and size of the text and numbers in a cell can be set, as can the color and style of a cell’s interior and borders).

These cells and code modules make spreadsheets excellent vehicles for developing robust health information applications from the bottom up, as I describe next.

Examples of how the PHPro uses Spreadsheets in Novel Ways

To exemplify what I’ve just written about spreadsheets, following are four groups of screen shots showing how the PHPro uses spreadsheet forms, grids and modules in innovative ways that deliver a unique range of capabilities and benefits. They explain these processes:

1. Data definition and collection
2. Data organization and analysis
3. Information storage and sharing
4. Report generation.

1. First comes data definition and collection. As I said earlier, when I started developing the PHPro, my goal was to create a software application able to manage every piece of relevant information over people’s lifetimes. This information would have the potential to help consumers/patients and their healthcare professionals develop a full and deep understanding of the person’s strengths, weaknesses, risks, problems, health trends (changes over time) and preferences, as well as the suitable options for prevention and treatment. I also wanted the information to be “self-actionable” by providing instruction, insight & guidance and warnings & alerts, which would promote a better quality of life by motivating and enabling the person to help him/herself deal with physical, emotional and behavioral concerns.

To accomplish this monumental task, I spent many years researching the healthcare literature and examining health questionnaires. During this process, I built “evergreen” (continually evolving) spreadsheet grids containing lists of questions to be answered by a consumer/patient, as well as by healthcare professionals. The PHPro was then designed to manage people’s answers to these questions, along with data obtained from databases, web sites, data streams and electronic documents (including XML files). Figure 1 (below) shows a small section of one of the PHPro’s Question Grids.

This bottom-up path led to the invention of my patented CP Split™ technology and other “discontinuous/disruptive” innovations, which became key components of the PHPro.

Figure 1 (click to enlarge)
Referring to Figure 1:

• Column A contains a unique ID number for each question.
• Columns B, D and E are used to control the branching logic (when the response to one question determines the subsequent question to be presented).
• Column C is a symbol that identifies the response scale to use (e.g., Yes-No, Yes-No-Uncertain, select one item from a list, select multiple items from a list, use a 1-9 scale, enter unstructured text, etc.)
• Column F contains the text for each question.
• Starting in column G and going to the right are the items a person may select in response to the question.

For example, on row 180, the symbol in column C designates a 9-point scale, with “NOT AT ALL” on one end (as indicated in column G) and “A GREAT DEAL” on one end (as indicated in column H). The “BRL” in column B, the number 4 in column E, and the ID number in column D, all instruct the software to branch (jump to) question “103 01 20 10” if the person response is less than 4 (on the 1-9 scale). Note that some of the cells are colored, which gives developers a visual depiction of the types of content in those cells.

Figure 2 (below) shows a series of screen shot depicting a type of user form the PHP system uses for manual data input. Macros automate the process by which the forms read the Question Grid above and present the questions and response options to the person; they also collect and store the person’s responses.


Figure 2 (click to enlarge)

As with all the PHPro components, this patented data collection process is very flexible:

• New questions are added by simply inserting them as new rows into the Question Grid
• Questions are modified by typing the changes into the Question Grid (and adjusting the ID number accordingly)
• Questions are removed by deleting their corresponding rows from the Question Grid.

Note that entirely new Question Grids can be constructed at any time in the same manner. In fact, entire libraries of Question Grids can be developed for use by people with different roles and in different situations.

In any case, as the questions are answered, the PHPro automatically stores person’s responses in a list containing the question ID (in a cell of column A) and the person’s response next to it (in column B)—which comprise the “raw data” —as shown in Figure 3 (below). Note that data not manually entered (e.g., data queried from databases, extracted from documents, or streamed from medical devices) can be added automatically to the manually input data using custom macros.


Figure 3 (click to enlarge)

2. Next comes data organization and analysis. Once the raw data are collected, the PHPro uses another spreadsheet grid—the Publisher Spreadsheet Grid shown in Figure 4 (below)—whose cells contain an assortment of formulas (which are not visible in the screen shot). A portion of the Publisher Spreadsheet Grid is which, along with its macros, automatically transform the raw data into structured information ready for report writing. Most of the rules (algorithms) for analyzing the data are included in this spreadsheet and others to which it is linked. These rules may contain criteria identifying when certain data indicate the existence of a health problem (e.g., when a lab test is abnormal, when someone’s emotional or state or cognitions reflects a serious psychological concern, when a reported symptom may be due to an adverse medication side-effect, etc.).

Since this involves technical spreadsheet model-building, I’m not going to take the time to explain what exactly is in this spreadsheet. Suffice to say that the data in this publisher spreadsheet are organized and calculated in a predefined manner that corresponds to the PHP reports.


Figure 4 (click to enlarge)

3. Then the contents of the Publisher Spreadsheet Grid are stored and shared. The contents of the Publisher Spreadsheet Grid are now stored in another file, without any macros, formulas or formats. A section of the stored grid, which is called a “Content File,” is shown in Figure 5 (below). The Content File (which can be converted easily to a delimited text file) is encrypted to protect the data inside. It can retrieved at any time the data needs to be updated, and whenever the person wants to view their information. And if they want, people can share any portions of of their Content File with individuals they authorize.
Note that the Content File can be saved in any location the person wants and its security is compliant with HIPPA regulations. This addresses a concern raised in a recent NY Times article, titled “Warning on Storage of Health Records”. The article discusses how the benefits of personal health records stored in Web-based databases is offset by concerns about risk to privacy. One way to diminish this risk is by putting health records directly in hands of the individual to whom they belong; that way individuals have complete control over who (if anyone) gets to see their personal information. The PHPro Content Files enable such protection.


Figure 5 (click to enlarge)

4. Now comes report generation. Figure 6 (below) portrays a piece of the PHPro report, which I discussed in my initial post on the topic. Only this time I’m showing columns B through F, which are hidden in the actual report.


Figure 6 (click to enlarge)

The cells in these columns contain numeric data that have been extracted from the PHPro Content File (described above). Other cells use these data to determine what rows should be visible and how the data should be displayed. For example, the series of blue boxes in cells K352 and K380, which indicate the amount of distress the person experiences in two situations, are created by a formula in those cells that use data in column E to determine the number of boxes to display.
A few other things about using spreadsheets for the PHPro reports:

• In addition to numbers, text and symbols, a PHPro report can contain multiple images (including pictures and charts).
• A report can contain buttons and links that automatically retrieve and display external information from the Web, as well as from electronic documents stored in a person’s own computer or in other computers via networks.
• Changing a report is similar to modifying the Questions Spreadsheet Grid: Add rows, delete rows, and change the words, formulas and formats of any cells in any rows. A wide variety of charts (graphs) can also be easily added and removed.

Web-Enabling the PHPro

The PHPro was originally built as a stand-alone desktop application. We are now in the process of making in web-enabled as well, so anyone with a browser and Internet connection can use it. I will have more to say about this in future posts.

Fertilizing the Seed

The quote from the ZDNet article at the beginning of this post included the statement that the bottom-up strategy often resembles a “seed” model in which an application’s small beginning eventually grows in complexity and completeness. This requires that the “seed” be nourished (fertilized). The PHPro is designed to grow and evolve continually through a collaborative process in which consumers/patients, sick-care and well-care professionals, research scientists, educators, software developers and others provide ideas and content that are incorporated into the system. Because it is built with highly efficient and flexible spreadsheets, uses a library of categorized data definitions (similar to a book libraries Dewey Decimal system), has a modular structure, and can interoperate with most (all?) other software system, the PHPro is able to molded and expanded into ever-more-powerful knowledge tools that are tailored to the needs of just about anyone. And best of all, this can be done for little cost and with little hassle, which is an important consideration in today’s difficult economic climate.

My hope is that these posts will help motivate people from all groups to join our team of collaborators and grow the seed we’ve been nourishing into a complete, diversified personal health knowledge system that has a positive impact on the health and wellbeing of all people.

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.

Personal Health Profiler™: Part 1

In these next series of posts, I’m going to delve into the details of a truly next-generation personal health record (PHR); well, it's actually, more like a personal health knowledge system. As I discussed in my last post, one key component of a better healthcare system is a very cost-efficient and easy-to-use way to gain and use valid knowledge to improve outcomes and control costs. This is where I've been focusing much of my professional life for almost three decades. I'm now going to write about a paradigm-busting software technology I've been developing over this period. Some may see this as self-serving, but my deepest hope is to develop good collaborative relationships and help bring social good. First, some background.

Twenty-seven years ago, I began a career as a licensed clinical psychologist. That same year, 1981, was also the time that the personal computer (PC) became available and I was intrigued. As I began learning about computers, the power of spreadsheet software caught my attention. I wondered if there was a way to use spreadsheet technology to manage patient information in a way that would:

• Help clinicians/practitioners of any type develop better treatment plans, deliver better care, and develop professionally through ongoing feedback about the progress and results (outcomes) of the care rendered.
• Help consumers (i.e., patients, clients and others utilizing well-care and sick-care services) to make better decisions and take more responsible actions--when dealing with health problems and other difficult life situations--through increased their self-understanding, knowledge of options, and structured guidance.
• Help researchers and policy-makers develop, validate, and disseminate best-practice guidelines.

A key question that came to my mind was this: How can a computer help an individual and his/her healthcare professionals understand how the person’s health, wellbeing and quality of life are affected by his/her:

• Thinking processes (one’s beliefs, attitudes, perceptions, etc.);


• Emotional processes (how one feels in different situations and why);


• Behavioral tendencies (including how and a person act in self-defeating ways);


• Coping strategies (how one tends to deal with life problems and the benefits one receives) ; and


• Mind-body interactions?

My quest to find an answer resulted in a two and a half decade journey of creative discovery.

Before I present and discuss the details of my radical innovation, I’d like to reiterate my full-disclosure: The software to which I’m referring is the Personal Health Profiler™ (PHPro™) application, which is owned by my company (National Health Data Systems, Inc.) and incorporates processes I patented in 1998. My intention here is to gain exposure for my invention with the goal of stimulating dialogue about new directions for personal health records, as well as sparking creative collaboration projects aimed at transforming our current healthcare system.

Now that the brief background and disclosure are out of the way, this post will focus on one of the many unique abilities of the PHPro: Its comprehensiveness and personalized navigation. In other words, the PHPro software handles a much greater depth and breadth of health data than any other PHPro. It presents this useful information--via web-based or desktop (stand-alone) applications--in interactive reports for consumers and health professionals. A simple mouse-click process enables an individual to “drill-down” from high level views (showing only the data category headings) to increasingly detailed views and self-help modules that are tailored to a person’s particular needs.

The image below (which can be expanded by clicking it) shows the least detailed ("highest" level) view of the PHPro’s Whole-Person Health & Wellness Profile (note that clinical profiles for healthcare and wellness professionals are also available). Included in a personal health profile is information derived from:

• Data entered manually by an individual via an intelligent "branching logic" process that I will demonstrate in a future post. Depending on the situation and type of profile being generated, the data may be entered the consumer/patient, a caregiver, and/or an authorized health professional.
• Data obtained from external databases, such as healthcare provider's electronic medical records (EMRs).
• Documents and other sources, including sick-care (treatment) and well-care (preventive & self-maintenance) guidelines, links to pertinent web sites, etc.

As you can see by the data category headings, the PHPro data are divided into five major (“first-level”) categories of data (in red). Within these main categories are 29 "second-level" categories (in yellow). Also notice that there are grey buttons in the right column with a down-pointing arrow.
click to enlarge image

Although the PHPro application does not look like it's a spreadsheet grid (see below), it is one, and it takes advantage of a spreadsheet's powerful, flexible computational and automation (macro) capabilities. In the screenshot above, for example, each data category heading "resides" on its own row of spreadsheet cells.
click to enlarge image

What you don't yet see (but will shortly) are the many additional rows beneath each heading row, which contain the person's actual health data. In the following image, I enabled the spreadsheet's column letters (top) and row numbers (left) to be visible temporarily, so you can see how many of the rows are hidden from view. For example, 77 rows of data related to possible symptoms are hidden between rows 139 and 216. This report, in fact, has about 1,400 rows of headings and data, of which only 34 rows are currently visible.

As shown in the image below, a person simply double-clicks an arrow next to any data category heading to reveal its details by displaying the rows beneath them. In this example, the button next to the Distressing Life Events heading is being clicked ...
click to enlarge

The PHPro then displays the pertinent information as shown below. In this example, the person has reported some degree of distress concerning eight life events (out of a possible 19 in the current assessment), with health problems being the most upsetting and stressful.

Note that the other 11 life events, which are not problematic for the person, remain hidden since they are not distressing. Also note that there are buttons in the left column on every data row showing an open lock symbol. If the person wants to share his/her information with certain healthcare professionals, clicking those buttons enables him/her to authorize access to certain individuals, while preventing access from others. This gives the person complete control over the privacy of his/her personal health information. click to enlarge

As per the image below, let's say the person double-clicks the down arrow next to “Having serious medical problems."
click to enlarge

This next image shows some of the details about the way the person thinks and feels about his/her medical problems. It also has an orange button labeled: “Manage this Problem.”
click to enlarge

Clicking that button launches the Coping & Problem Solving module, which starts with a brief interpretation of the person’s thoughts and feelings about the medical problem, as shown in the screen shot below. [Note that the screen shots below, unlike the ones above, are built with spreadsheet program's "user forms" instead of spreadsheet grids.]

No matter which distressing life event is selected, the person can then click the green “Solve It” button to be guided through a comprehensive “transactional problem solving” process that helps him/her deal with the problem.
click to enlarge

After clicking the Solve It button, the Introduction window appears, as shown below.
click to enlarge

Clicking “Next” brings up the first Coping & Problems Solving screen, as shown below. Note that this window has a yellow “See More” button.
click to enlarge

Clicking the “See More” button displays an analysis and interpretation of the person’s coping strategies.
click to enlarge

I’m going to stop here, but the Coping & Problems Solving process continues through a series of instructional and action steps that guides the person in:

• Changing maladaptive thinking and reducing self-defeating emotions (from a Cognitive-Behavioral and Rational-Emotive therapeutic framework),


• Building and evaluating possible plans of action to solve (or at least control) the problem,


• Implementing the best plans,


• Assessing the results, and


• Trying to solve it again, if it is wise to do so, or learning to tolerate it better if it cannot be solved.

Note that a person can discuss his/her problem-solving plans with others and even share the details of his/her Coping & Problems Solving steps with a wellness coach, counselor, or therapist.

I’ve barely scratched the surface. In subsequent posts, I will:

• Show the details of other categories of data
• Discuss how the information supplied by the PHPro can be used by coaches/counselors/therapists to help break through consumer's inertia and promote positive lifestyle change for better overall health & wellbeing and self-maintenance of chronic conditions
• Discuss the Coping & Problem-Solving process in more detail, focusing on how it can help consumers help themselves, as well as assisting their coaches/counselors/therapists Demonstrate how a person can authorize different people to view particular pieces of information and prevent other data from being accessed
• Describe the processes for:
• Manually inputting data using sophisticated branching logic
• Modifying, updating, and tracking changes over time
• Obtaining data automatically from external databases
• Storing the Profile data in "individual record files"
• Using computational algorithms (rules) to analyze the data
• Developing, updating, and modifying reports
• Sharing a data file securely
• Accommodating any current and future data standards
• Expanding, modifying, and validating data sets
• Working in conjunction with other software technologies
• Building research knowledge bases
• Incorporating "information therapy" materials
• Supporting centralized, decentralized (peer-to-peer), web-enabled, and asynchronous desktop architectures/platforms
• Explain many of the unique yet simple technical methods that make all this possible.

I plan to have a fully functional version of the PHPro application available sometime this month, so collaborators can obtain their own profile and offer feedback.

I welcome your questions and comments.

My next post focuses on the need for much greater knowledge and the role PHPro can play.

The Whole-Person Integrated-Care (WPIC) Wellness Solution: Part 6

In the first five parts of this series on the Whole-Person Integrated-Care (WPIC) Wellness Solution, I discussed how particular personality characteristics -- i.e., one's cognitions (thoughts), emotions, knowledge, and coping strategies -- determine whether or not people take good care of their health. On one end of the spectrum are the self-motivated "Activists" eager to attain and maintain excellent health. On the other end are the "Ignorer/Deniers," who strongly and consistently resist self-managing their health for many reasons.

I now begin to answer the question: What's necessary for people to change how they think, feel, and act in a way that promotes healthy living?

I assert that AWARENESS is the place to start. People have little incentive to change if they are unaware that they have health problems or risks or are managing chronic conditions poorly. These people first need greater awareness of their health status and probable future, whether due to ignorance or self-deception. Understanding their health problems, risks, and poor self-management tends to give rise to fear. This fear is based on their belief that they will experience pain, become disabled, or die. For some, such fear is a motivator. For others, the fear leads to denial, so it's wise for them to "reframe" the situation in terms of the "joy of life" rather than the "fear of death," as I discussed in an earlier post. Nevertheless, awareness is essential.

Things that can promote self-awareness are other people, media, and information technology. These people may be sick-care professionals (e.g., doctors, nurses, and therapists); well-care coaches and counselors; family and friends; and even "virtual acquaintances" through Internet-based social networking (see Web 2.0). Media include websites, TV, movies, newspapers, books, etc. Finally, information technology includes health information systems, such as personal health records (PHRs) and online health data repositories.

In this post, I will focus on good and bad health information technology for consumers since there is great debate about its usefulness. See, for example, this recent article in Business Week about Google and Microsoft's Internet-based products for electronic healthcare information storage and access and the Robert Woods Johnson blog for their Project HealthDesign PHR development initiative.

We are in the "Stone Age" of health information technology. But, unfortunately, current-day products are not very useful to the typical consumer and could be more helpful to professionals. That's because the most valuable information is not obtained by simply having a place to store personal health data. Instead, value comes from using these data to help consumers, and their healthcare professionals prevent physical and mental health problems, treat acute illnesses, and self-manage chronic conditions.

So, what about search Internet engines such as Google? Well, they're not of great value either since only 16 percent of online consumers find what they were looking for since search engines tend to focus on breadth rather than on content quality, which means they usually provide an overwhelming number of generic "hits" that are often of questionable validity. This is particularly true for searches on health topics such as alternative medicine, herbal and nutritional supplements, prescription drugs, disease cures, and nutrition. In fact, 70 percent of scientific studies show that the quality of online health information is a significant problem.[1]

Things have been improving, however, with websites such as Helia Health, Organized Wisdom, Revolution Health, and WebMD. The problem is that they all focus on providing general rather than personalized information. This means people must scan through pages of information and links, most of which have nothing to do with their needs. And when they finally navigate to where relevant information is located, it tends to be generic, not specific to each individual, which can lead to information overload, knowledge underload, and inaccuracies.

What's needed is an easy, low-cost way for data from healthcare providers and consumers, no matter where they are stored, to be transformed into useful information. This information should increase people's awareness of their current health status and risks through comprehensive, holistic assessments. It should also provide targeted, personalized information that increases their knowledge and understanding of the most cost-effective ways to deal with troubling health-related issues. These issues may include coping with a stressful life situation, changing unhealthy lifestyles, adhering to one's care plan, making valid diagnoses, and deciding wisely about which treatment option and insurance plan to choose. As discussed in a previous post, these capabilities go beyond data storage and access and enter into personalized, holistic (mind-body-spirit) decision-support and self-help assistance. Unfortunately, today's PHRs need to be more mature regarding these capabilities.

I've long been recommending the creation of disruptive (radical, discontinuous) technologies that can achieve the lofty goals I described above. By way of full disclosure, I've been developing such a system, called the Personal Health Profiler™, for over two decades. It is a significant departure from the kinds of PHRs and websites in use today in that it promotes rapid and more complete understanding of a person's:

• Current physiological, psychological, and mind-body functioning and risks
  
• Wellness interventions and self-management plans
  
• Sick-care treatments
  
• Changes in health status (trends over time)
  
• Clinical outcomes and costs of care received.

This information is presented in a personal health profile. It yields a better (more profound and broader) understanding of a person's problems and needs, improving diagnostic and treatment/intervention decisions. It comes from analyses of detailed data about the relationships between one's:

• Internal factors include problematic physical signs and symptoms, illnesses, emotions, cognitions (thoughts, attitudes, perceptions, beliefs, "self-schemas," attributions & appraisals, expectations, memories, etc.), and knowledge & understanding.
  
• Behaviors including diet, exercise, alcohol and substance use, risky activities, sleep, mobility, etc.
  
• External influences/causes including stressful interpersonal relationships, stressful and unhealthy physical (e.g., work, living) environments, economic pressures, etc., on the one hand, and supportive conditions that promote good health on the other hand.
  
• Medications and abnormal lab test results to identify possible interactions (e.g., how certain drugs being taken may be causing one's white blood cell count to drop and interfering with one's sleep).
  
• Mind and body, such as medication side effects and physical illnesses that present as mental health problems and physical symptoms that may be due to (or exacerbated by) stress.

In addition, this next-generation application provides these essential functionalities:

• "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;" 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 stressful/distressing life issues and health risks, which help focus wellness-counseling efforts.
  
• Identifies how a person's underlying beliefs (cognitions) and related emotions foster or hinder healthy behaviors and wellbeing, which also helps focus counseling efforts and helps break through resistance and denial.
  
• Delivers warnings and alerts essential to effective prevention.
  
• Delivers ongoing feedback to the consumers and professionals on their progress, so any necessary adjustments to the wellness plan can be made efficiently, and good continuity of care can be maintained.
  
• Uses a structured, personalized coping & problem-solving methodology that helps a person achieve positive results as quickly as possible by targeting the most problematic situations first and applying a proven method for resolving them.
  
• Supports well-care / sick-care integration.
  
• 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
  
• Continually feeds a knowledge base with de-identified treatment and outcomes data to support research efforts.

These capabilities increase consumer awareness and cut the time the health professionals have to spend trying to understand a person's problems, needs, and cognitive-emotional blocks, speeding the creation and improving the accuracy of their care plans. And the targeted information, self-help tools, warnings & alerts, structured coping & problem-solving methods, and continuous knowledge base feeds offer a cost-effective way to help improve outcomes, including better health, wellbeing, and overall quality of life, increased productivity, and workplace safety.

Note that such a paradigm-busting disruptive technology need not make conventional technologies obsolete since they can work together.

In subsequent posts, I'll explain how the Personal Health Profiler™ works and offer collaboration opportunities in its continued evolution.

---

[1] "Health Information Search Engines Emerge; Growing Consumer Demand for Health Information Increases Need for Better Quality, More Personalized Searches, Says Expert at 11th World Congress on Internet in Medicine." Internet Wire (Oct 18, 2006).

The Whole-Person Integrated-Care (WPIC) Wellness Solution: Part 5

In my last post [click here for the first of the series], I discussed the personalities, coping strategies, and health-related needs of the third type of individual, the "Inactives." I now conclude this series by examining the fourth and most resistant group: the "Ignorers/Deniers."

Simply put, Ignorers/Deniers just don't focus on their health. This is for a variety of reasons, which I'll be discussing. First, 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 mindset they adopt, which includes thoughts such as:

• "I do not accept there's a problem with my health" – despite convincing evidence.
• "I 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!" – a 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 a distorted measure of self-worth.

Ignorers/Deniers, therefore, differ from the other personality types in essential ways; for example:

• The three other types of individuals think about their health, and when confronted with a health problem, many question whether they can make good decisions and help improve things, which may make them anxious due to self-doubt. Nevertheless, despite their anxiety and doubt, they are willing to learn and act wisely. Many Ignorers/Deniers, on the other hand, are so terrified by the notion they may have (or get) a severe illness that they avoid thinking about their physical and emotional 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 will probably die from their health problems; to them, the thought of being or being ill is too great to consider. Although this self-deception may keep their fear in check for a while, their inaction and ignorance make them vulnerable to worsening health and personal problems.
• If Ignorers/Deniers did think about their health, many would feel hopeless and helpless, believing they cannot deal with serious illnesses or personal problems. And those who portray an air of invincibility are likely covering up great self-doubt and fear, or they may be delusional.
• While other types of individuals may have valid concerns about finding a competent healthcare practitioner, some Ignorers/Deniers are so distrustful of the healthcare profession that they won't even consider seeing a doctor, even if they are in pain or distress, often until it's too late.
• While health problems may cause other types of people to become sad or even depressed, for a time, they can 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, living longer in chronic emotional pain isn't motivating. And when confronted with the knowledge that their health risks can kill them, many Ignorers/Deniers deny the facts because the idea of dying is also too emotionally painful for them to acknowledge; the threat of death, therefore, isn't a motivator. In fact, the odds are great that such a person will fail to make substantial lifestyle changes, even if facing probable death. This prevents them from having the drive and focus needed for constructive action.
• While other individuals are willing to get help when needed, 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 "avoidance" coping strategies as the Wannabes and Inactives; that is, they may:

• Try to feel better by doing enjoyable or interesting things rather than gaining knowledge and developing a plan of action
• Act as if nothing has happened or trying not to think about their problems
• Resign themselves that nothing can be done to improve the situation, even though they lack adequate understanding and fail to exert sufficient effort.

As I discussed in my previous posts, these coping strategies are maladaptive in the long term since the inertia (inaction) they promote allows their health risks to emerging as serious problems and their existing health problems to worsen.

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! Consider the following:

• There are compelling discoveries in cognitive science, linguistics, and neuroscience about how "reframing" serious health-related issues can help motivate resistant people to change. For example, instead of trying to break through the denial of Ignorers/Deniers through threats they will die, it may be much more helpful to reframe the issue in a way that focuses them on a vision of "joyful living" rather than a "fear of dying," since joy is a more powerful motivator than fear [reference]. This kind of reframing changes the mental structures that shape one's view of the world; it typically requires months of psychological counseling to break through the thoughts and feelings that block Ignorers/Deniers' awareness and motivation to change.
• When cultural influences create a "machismo" attitude, in which Ignorers/Deniers perceive getting help as a sign of personal weakness or failure, cognitive-behavioral counseling can combat that belief. In addition, innovative self-help software that guides the person toward healthier behavior and thinking can be helpful. One focus would be reframing the situation from (a) getting help revealing weakness to (b) receiving help when needed and using it to improve one's life is a sign of wisdom and personal strength, whereas refusing help is childish and self-destructive.
• Dealing with a person's lack of trust may require the intervention of a wellness coach who takes the time to establish a close, positive relationship with the Ignorer/Denier and has the knowledge and experience to gain the person's confidence.
• As for Ignorers/Deniers with addictions or compulsions, lengthy counseling (and possible medications) may be needed before they acknowledge their problems and have the will to confront them.

Regarding wellness programs, the Ignorers/Deniers are the least likely to participate. Engaging them is critical, such as offering meaningful incentives to take a self-assessment and speak with a wellness coach. The initial goal of such wellness counseling should focus on understanding and helping reframe their beliefs and perceptions. This will enable them to be more open to gaining awareness about their health situation. Innovative technologies that help focus and entice people to break through their negative mindsets and resistance would 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.