• The double-edged sword

    Data use is a double-edged sword, hopefully doing much more good than harm, but capable of doing quite a bit of both. For example, the U.S. government's Beacon Community program may want to use data to assess and improve the healthcare of underserved populations. This is an admirable goal. However, what is to stop insurance companies from using this information to deny coverage to residents in those areas, in much the same way that insurance coverage is now denied many hurricane prone communities? Measuring and improving educational outcomes was the impetus for school rankings and standardized tests. However, it led to people gaming the system to avoid penalization.

    Of course, in this case, it might lead to a community overstating poor health outcomes to receive more funding. There will always be unintended consequences, which are difficult to predict. But the larger the data sets, and the more sophisticated our ability to analyze them; the chances for abuse and unforeseen negative consequences become greater.

    Other problems are raised by the imbalance of power between individuals and organizations. The Fair Credit Reporting Act (FCRA) covers health history data compilations, but it is up to the patient to request the record and dispute the claim, after their aggregation has already been used. Technically, an individual can refuse to sign the waiver that allows the company access to this data, but then the company can refuse to do business with them altogether. And this assumes a level of corporate transparency and honesty that cannot be assumed, given the amount of corruption brought to light by litigation.

  • Persuasion

    Most people don’t smoke, overeat, drink to excess, self-medicate, eat poor quality food, not exercise, or practice unprotected sex because they aren’t educated. They do those things because cultural or personal factors influence their behavior at the decision making point. They know all those things have a detrimental effect.

    Until we change the underlying factors, those behaviors are unlikely to change.  Some changes have to happen at the policy level (e.g. zoning for sidewalks to make neighborhoods walkable), but some are more inexplicable and not easy to influence.  People knew that smoking was bad for you well before it became “uncool.”  In countries where it is still considered stylish and elegant, high levels of tobacco use persist. Chewing tobacco may be considered manly in the South, and disgusting in the Northeast. Both groups have an equal amount of knowledge about the health effects.

    While organizations like the Ad Council have a sophisticated track record for developing public service announcements, changing the deep-seated behaviors that lead to poor health will require getting Madison Avenue more involved, using the tools of advertising as much as the more evenhanded education of medicine.  Persuasion is as important as education.

    Additionally, getting someone’s divided attention in this time-starved world is a challenge.  Much health care savings would be realized if individuals engaged in prevention.  However, many people don’t go looking for information until their concerns are pressing.

  • Fun

    How do we make health informatics fun for people? With all that’s been written about patient care, cost containment, big data analysis, and ease of use; fun doesn’t seem to enter into the conversation much.

    People may use tablets because they help them get their work done, or because they make life easier. But they also use them because they’re beautiful, and shiny, and have brightly colored screens. Tablets and smart phones are probably the most popular toys for adults, so anything that applies to toy design may be useful in encouraging higher adoption rates in informatics.

    In a similar vein, presenting data in an easily digestible form can be made fun. Given all the years of graphic design research, and the beautiful work being done in data visualization, it is surprising how poorly designed many personal health records are.

    Efficiency, affordability, interoperability; there’s an endless list of goals the field is supposed to be aiming for. But everything else being equal, people are more likely to use the technology that puts a smile on their face and brings some pleasure to their day.

  • Under promise and over deliver

    While it’s an exciting time to be part of the health informatics field, overpromising what we can deliver won't do our future clients any good. A professional should always under promise and over deliver; not the reverse. It’s hard to imagine anyone in 2010 saying these technologies would be mature in 5 years, and there are significant hurdles that will be hard to overcome.

    For example, some practitioners are simply wishing someone else would do their paperwork for them, but many are resistant for good reason. The transition period here is going to be evolving for quite some time. Part of being in a “cutting edge” field is being a lab rat for the future, and not everyone wants to be that lab rat. The joke about Microsoft building cars still rings true.

    (See If Microsoft Made Cars)

    Or take the idea of efficiency. There are lots of low-hanging fruit in healthcare, similar to the wastefulness in the 1980's that allowed the MBA to become so popular in mainstream business. But numerous so-called “inefficiencies” are going to be difficult to address with informatics. How can informatics address the behavioral and cultural factors that contribute to the high cost of American healthcare, such as obesity, doctor compensation models that encourage ordering expensive tests, or legal concerns that encourage doctors to order arguably excessive tests? These are inefficiencies that are going to be extremely hard to address, because the underlying systems that create those problems are particularly resistant to change.

    Patient empowerment is another thing that sounds good on paper, but is problematic. “Taking ownership” is frequently a euphemism for pushing the doctor’s responsibility on to the patient. With doctors having minimal time to spend with each case, the risk is leaving patients to make decisions without sufficient guidance. We don’t go to see our doctors because they regurgitate what we read on a web site. We often go to see them because we want someone with years of professional experience to cut through the information overload.

    Many people don’t have the time for “informed consumerism”. With so much privatization going on in the last several decades, an enormous amount of decision making has been pushed off on to people who are time-strapped as it is. Citizens are now being forced to be amateur experts on financial management, insurance options, and a variety of other fields previously covered by specialists. More information is not necessarily better. One of the challenges of this field is going to be providing people with the right amount of information; not too little, and not too much. Even the most well-educated person can’t be expected to make decisions that, at the least, should be the result of considerable professional guidance.