Personal Health Application

In this post, I propose the development of a Personal Health Application (PHA). It is a next generation consumer-centric information system that helps improve healthcare delivery, self-management and wellness by providing clear and complete information, which increases understanding, competence and awareness.

PHAs would:

• Incorporate sick-care data currently found in Electronic Health Records (EHRs) used by healthcare providers and Personal Health Records (PHRs), and add well-care data focusing on prevention, self-management, and emotional well-being


• Give a high-definition, big picture, whole-person view of a person's physiological & psychological risk factors, current health, health trends, and projected health status.


• Reveal the interventions that are effective for an individual by integrating and analyzing a lifetime of data about health status & quality of life, conventional and complementary & alternative medicine (CAM) treatments received, and the clinical outcomes of that care.


• Enable the exchange of patient data with providers' EHRs, as well as obtaining data directly from lab, pharmacy or hospital systems.
  

Whereas today's PHRs present narrow views of a person's general health information, PHAs would provide clear, comprehensive views of the whole person-mind, body, spirit and environment-showing risk factors, current health status, health trends, and projected one's future health status. Revealing such trends and predicting one's health condition under different scenarios can be powerful motivators for health living, as well as offering important clinical insights for healthcare providers.

Furthermore, PHRs do little to inform a person about treatment efficacy and the value of CAM approaches. PHAs, on the other hand, would provide this information by collecting and analyzing a lifetime of detailed health data to show what works for the person and what doesn't.

PHAs also bridge well-care and sick-care:

• Sick-care focuses on the treatment of diagnosed physical & psychological problems


• Well-care focuses on preventing serious illnesses and complications, and increasing people's well-being and quality of life through self-management and healthy lifestyles.

The objectives of a PHA are to inform, empower and enable consumers to make better decisions and act responsibly. This includes enabling consumers to:

• Be helpful and proactive in managing their health, rather than passive and reactive.


• Make wise decisions when agreeing to specific treatment options and living health lifestyles


• Carry out strategies for remaining healthy longer


• Comply with plans of care when ill to speed recovery, avoid complications, and achieve the best possible quality of life


• Deal effectively with personal problems and life stressor to maximize one's overall well-being.

Informing and empowering the modern consumer

My previous three posts discussed the daunting challenges facing today's "modern consumer." This post focuses on what is needed to inform and empower consumers, so they make good decisions and act responsibly when it comes to selecting the best treatments and adhering to them.

It's obvious that consumers need valid, understandable information about the risks, benefits and costs of different treatment options. But often that's not enough. Consumers also need the motivation, resources and skill to comply with chosen plans of care. In other words, they must be mentally, emotionally and physically able and willing to carry out their healthy living strategies, and do it effectively and efficiently.

Obtaining the needed information can be difficult because information found on different web sites, instructional pamphlets and expert opinions often offer conflicting, inadequate, irrelevant, unclear, and/or invalid information. Only 16% of online consumers searching for health information find what they were looking for. Although general search engines perform satisfactorily for generic searches, they may not do well for health queries. [1]

For example, much available information focuses only on conventional treatment options and ignores CAM (complementary and alternative medicine) interventions. Some information sources lack objectivity because they are influenced by advertisers sponsoring them. Some offer general information that is not adequately personalized for an individual's particular situation. And it's tough to find clear-cut information that lays out all reasonable options in terms of cost; risks (e.g., adverse side-effects, mortality rates, quality of life impairment, etc.); likely benefits; patient responsibilities; and so on. In addition, an individual's personal preferences tend to be overlooked.

Another problem is that the mind-body connection is often ignored, even though up to 50% of all visits to a primary care physician are for conditions with affected by psychological factors, and the relationship between emotional stress and physical disease is well established.[2] So, if a person is diagnosed with a physical problem, related emotional/psychological issues are rarely addressed, and visa versa.

Furthermore, consumers can be overwhelmed by having to navigate through web sites with hundreds of links, or read search engine returns that can easily total in the tens of thousands to hundreds of thousands.

And one more thing, consumers often need to have conversations with subject matter experts-including knowledable peers and professionals-in order to have their questions answered and to receive hands-on guidance and encouragement. Sometime reading written materials, listening to tapes, or watching videos isn't enough.

I suggest, therefore, that the best way to give consumers what they need is to implement a consumer-focused strategy with the following tactics-and do it in an easy, secure way that protects personal privacy:

• Perform comprehensive, lifetime health status and risk assessments that examine the "whole-person," including psychological and biological factors, environmental influences, and personal preferences and abilities.
• Use the results of the assessment to provide personalized "information therapy" that gives a clear explanation of people's existing conditions and risks, offers a risk-benefit analysis of both conventional and CAM treatment options, and gives instructions for adhering to healthy living strategies.
• Offer targeted, interactive, decision-support and problem-solving tools that assist people in making good choices and dealing with troubling issues likely to prevent treatment compliance, in order to replace stress, denial, depression, anxiety, etc. with effective coping skills and proactive behaviors.
• Focus on well-care (illness prevention, health optimization, recovery from health problems, and health self-maintenance).
• Connect people with vetted peers and professionals who share experiences and ideas, ask and answer questions, and give emotional support.
• Take the time to examine motivational issues and offer meaningful support and incentives.
• Offer alerts and reminders to increase awareness of what to do and when to do it.
• Make sure care is coordinated when multiple providers are involved (e.g., primary care and specialists).

What we need, then, are collaborating networks of peers and professionals who use a next-generation Personal Health Application (PHA), which differs considerably from today's personal health records (PHRs) and health information web sites. My colleagues and I are developing such networks and prototypes of such technologies; I'll have more to say about this in future posts.

[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).

[2] WellnessWiki

Jake's Deadly Dilemma

My two previous posts about the plight of the modern healthcare consumer focused on Jane’s exasperating treatment decision and John’s health insurance ordeal. This post examines a life-threatening scenario any of us could face in a disaster.

As he regained consciousness after the explosion, Jake found himself pinned under a beam, unable to move; he was trapped in his office building. To make matters worse, he kept loosing consciousness. Thankfully, 1st responders (fireman, police, and emergency medical units) were arriving outside. Unfortunately, they didn't know where in the building victims were located, or which stairways, hallways and rooms were safe to enter.

Several 1st responders reached Jake eventually. Sadly, there were two "men down" from serious injuries during the search.

Jake's rescuers began to evacuate him, but they didn't know his medical history, nor could they determine the trauma centers best suited to treat his injuries. There was also difficulty maintaining communications between the 1st responders and trauma center staff since telephone and Internet services were sporadic. The ambulance driver ended up taking Jake to a nearby emergency room hoping it had sufficient beds, surgeons and other resources needed to treat him.

When they arrived, things were chaotic. Due to widespread devastation, the doctors and nurses in the ER were inundated with injured patients. When they got around to Jake, they had trouble delivering the care he needed due to problems allocating their medical equipment, directing their staff, and keeping track of their medicines and materials. Since Jake was unconsciousness and didn't have any identifying documents, the trauma team couldn't obtain important information about his allergies and pre-existing medical problems. They couldn't even notify family about Jake's condition, nor have someone with power of attorney make a life-saving decision.

What's the problem here?

Not enough is being done to equip 1st responders and trauma center staff with information they need to evacuate victims safely, transport them to the right trauma centers, and treat them effectively in the emergency room and beyond. In disasters, pandemics and terrorist attacks, an information system is needed that helps save lives and property through rapid response by enabling emergency preparedness and providing assistance for 1st responders and trauma center staff.

If the 1st responders assisting Jake had been using such a system, there may not have been any "men down." They would have known where Jake was located in the building and would have followed the safest path to him. That would have protected the 1st responders and got them to Jake more quickly. It would have also identified the trauma center best able to care for his injuries and would have instructed the ambulance driver to take him there. It would have also maintained communications between the emergency personnel at the scene of the explosion and the hospital staff. In addition, it would have been able to obtain Jake's medical history from any health record systems using "biometrics" (such as fingerprints and retinal scans). And it would have helped the nurses and doctors deliver the necessary care with minimal disruption and error.

My next posts will examine solutions for empowering and supporting modern consumers when making important healthcare and insurance decisions, and for helping victims by assisting 1st responders and emergency room personnel in disasters.

Click here for the next post in this series.

John’s Health Insurance Ordeal

Last time I wrote about Jane’s exasperating treatment decision. This time I focus on John’s health insurance ordeal.

It was time for John to choose a new health plan for his family and he wanted to do it right. So he spent weeks visiting insurance web sites, using online calculation tools, and talking to numerous insurance professionals and other consumers. He gathered tons of data on dozens of health plans and put it all in a big spreadsheet. It listed the deductibles, premiums, co-insurance, co-pays, covered treatments and wellness programs, ceilings on coverage, estimated tax-savings and other details.

What’s the problem here?

Nearly everyone agrees that skyrocketing healthcare costs in the USA—much higher than any other country—are putting our nation in danger of financial ruin! Those in the know are also aware that there are very serious quality and efficiency problems with America’s healthcare. There are over 45 million uninsured. Many businesses can’t afford to cover their employees. Hundreds of thousands of patients are hurt or killed each year by medical errors and deadly drug effects. The quality of care delivered in our country is rated below many other industrialized nations. And the enormous Medicare debt we’re pushing onto our children is shameful!

To deal with these serious problems and others, our country has recently been trying to control costs and improve quality by having consumers put more “skin in the game.” That is, they must pay more for their healthcare. The logic of this “consumer-directed healthcare” strategy is that by paying more, consumers will take control and drive down costs. For example, consumers will be less likely to request unnecessary care. They will manage their own health better by making positive lifestyle changes. And they will seek out providers who deliver the most cost-effective treatments and get the best results.

While this strategy may seem sensible, many critical questions remain unanswered. How are consumers to be certain when care is required? How can they determine the most cost-effective treatments and find the providers who deliver the best care? And how can they select the most affordable health plans that meet their current and future needs? Jane and John—being bright, educated and motivated consumers—did a great deal of research, got tons of information, but ended up with no clear-cut answers.

Bottom line: The consumer-directed healthcare strategy is dangerous! This is because the most important ingredient is missing: Consumers need easy access to accurate, relevant and understandable information about the quality and cost of providers, treatments, eldercare and health plans. This information is essential for making prudent choices.

What health insurance policy is the right one?

Not surprisingly, John discovered that policies with lower premiums and higher deductibles, while costing less, carried greater financial risk. Such plans would save him money as long as he and his family remained healthy. This meant he would have to make very accurate judgments about likelihood of family members getting sick and the extent of care they would need in the coming year. A miscalculation, incorrect assumption, or just bad luck, could send John into financial ruin.

Unfortunately, research suggests that consumers consistently underestimate their risk of being seriously ill. This is especially true for individuals who have not used healthcare services often, because they don’t have the knowledge they need to fine-tune their judgments based on experience [1].

And consumers’ decisions don’t stop there. After you chose a health plan, you must determine what healthcare providers deliver the most cost-effective care and, if you’re not feeling well, you have to decide whether your symptoms require a doctor’s visit.

What’s the problem here?

As a consumer, you need information about health policies that enable you to compare different plans. You also need a clear-cut way to estimate your future healthcare needs and your out-of-pocket expenses in different scenarios. You then have to become a good diagnostician, so you don’t seek unnecessary care or allow unnecessary tests … Just don’t err and fail to go to the doctor for something serious!

Putting it all together: The role of the modern consumer

So, as a modern consumer, it’s your responsibility to know when you’re sick enough to make a doctor’s appointment. It’s your responsibility to choose the treatments that will do you the most good with the least risk when you are ill, as well as finding competent healthcare practitioners and hospitals that will deliver that care safely and cost-effectively. It’s also your responsibility to optimize your health and manage chronic illness through the right lifestyle changes and adherence to the right self-management plans. In addition, you may be responsible for assuring that elderly loved ones receive the right care and have a good quality of life. On top of all this, it’s your responsibility to choose the right health insurance policy for yourself and your family.

As a modern consumer, therefore, you have the daunting responsibility of researching all your health care and insurance options thoroughly, while avoiding information overload. Where essential information is lacking, you must somehow get the knowledge you need anyway. And then you must gain a clear understanding of confusing technical data and conflicting professional opinions. GOOD LUCK!!!

Click here for the next post in this series.

[1] Based on ConsumerReportsMedicalGuide.org

First of 3 stories about the dilemma modern consumers face in this era of "personal responsibility."

I'm now going to focus on the dilemma modern consumers confront in this era of "personal responsibility." During this next series of posts, I'm going to present and then discuss three stories about the difficult position patients and other consumers face thanks to today's consumer-directed healthcare strategy.

• One has to make difficult treatment decisions when there are no clear-cut answers.
• Another has to decide on a health insurance policy from among dozens of confusing alternatives.
• And the third is being treated in a trauma center after a catastrophic event.

Let's start with a story about Jane's exasperating treatment decision.

After seeing countless specialists and six rounds of chemotherapy, Jane's ovarian cancer metastasized to her liver. This means she now has too many tumors for surgery. One doctor advised her to "Go home and think about the quality, not the quantity, of your days."

At 39 and the mother of two toddlers, Jane wasn't ready to give up; instead, she faced an excruciating decision. Three oncologists advised that she continue receiving chemotherapy, which showed some sign of working the last time. But two others thought she should first try cryosurgery, which starts by injecting liquid nitrogen into the tumors to shrink as many as possible. They then follow up with chemotherapy in hopes it would be more effective. The problem is, Jane might not survive the cryosurgery procedure.

When she asked a surgeon how to decide, he said that no one knows what she should do. He told her that she would have to make the decision based on here "own values" ... whatever that means!?!

Exasperated, Jane shouted, "I'm not a doctor! How am I supposed to know!?!"

Jane isn't alone. Many patients and other healthcare consumers face making daunting choices without adequate knowledge and guidance. Examples include prostate cancer, which gives patients the choice between watchful waiting and aggressive therapies like radiation or surgery. Breast cancer patients often hear conflicting advice from experts suggesting lumpectomy and others mastectomy. Heart disease patients may be told they need bypass surgery by one doctor, angioplasty by another, and a third says that drugs are all that's needed. And even for conditions that are not life-threatening-such as gout, back pain, mental illness, autism, chronic fatigue, menopause, dental procedures, and many others-there is little agreement as to the best treatment regimen.[1]

This is the bind more and more healthcare consumers are finding themselves in. Modern consumers now face a new world of "personal responsibility" and perplexing choices in a struggling healthcare system plagued with safety, quality and efficiency problems. Most are lost and confused when it comes to making important health decisions and taking responsible actions. It can be a lonely, frightening and overwhelming experience considering all the treatment options and medical uncertainty. It's like wandering around lost in a foreign land.

How is a consumer to know what's best?

Becoming more knowledgeable is important, but it can quickly become overwhelming; information overload is a real threat. For example, search the Internet for information on most types of cancer and you'll likely receive at least a million results. Not only is it impossible for a consumer read all this information or to understand it, but there are often conflicting recommendations and uncertainties. In fact, a Times/CBS poll reported that over half the time patients are given multiple treatment options with no clear best choice. Not to mention how difficult it is to figure which web sites offer accurate and unbiased information, and which are influenced by the self-interests of their advertisers and sponsors.

What about asking your doctor?

Sadly, few medical professionals have the time to sit with you and clearly explain all the data. Even if they did, it's unlikely that they'd have the breadth of knowledge to help you understand all the possible alternatives, including complementary and alternative approaches (such as dietary supplements, mind-body medicine, Chinese techniques, homeopathic and naturopathic medicine, bodily manipulation, energy medicines, etc.).

To make matters worse, an estimated half of all surgical operations and other medical procedures lack strict scientific evidence of their effectiveness and safety. In other words, healthcare providers often don't know what treatments work best for a particular patient. Despite all our medical advances, our country is way behind when it comes to tracking treatment efficacy and the outcome of prolonged medication use.

This means that consumers must now struggle to make treatment decisions that are beyond the knowledge of the experts!

Next time I'll tell the story of John's health insurance ordeal.

Click here for the next post in this series

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[1] Based on a New York Times article titled "Awash in Information, Patients Face a Lonely, Uncertain Road" Aug. 14, 2005. Available at http://law.wisc.edu/patientadvocacy/PDFlinks/NYTimes.pdf