Making Data Work for the Consumer

by Scott Mosley

Americans today have direct access to an unprecedented and rapidly-expanding amount of data. This can easily lead to the paralysis of data overload, if raw data is not filtered and focused through the thoughtful and purposeful use of consumer-oriented decision support platforms. A wide range of decision support platforms/tools are available to today’s healthcare consumer. However, studies of the extent to which these tools are effectively employed suggest very mixed results. There are a number of barriers which account for this mixed effectiveness, many arising from the design, content, format and dissemination of the tools themselves. Limited consumer awareness of information sources and data repositories. Few people really know where to look for the information they need. Poor tool design and confusing presentation of complex information. As educated as consumers have become, effectively digesting outcomes data requires a level of sophistication which is rare in the general population. Lack of relevant content supporting the comparison of individual practitioners and healthcare organizations. Most of the time, data is so general that it’s of little value in making relevant side-by-side evaluations. Low levels of data literacy often limit data consumption. Particularly among the growing elderly population, reading healthcare data can be a very challenging proposition. Lack of online access to data repositories remains a factor. This is particular true where the nation’s poor and underserved populations are concerned. Lack of trust in the source of data. The extent to which selective or self-serving analysis comes into play makes many data sources highly suspect to many consumers. Difficulty engaging healthcare practitioners to discuss relevant information. A general lack of time and training on the part of practitioners and the absence of incentives often present insurmountable barriers to consumers in their attempts to engage physicians and other providers in meaningful dialogue. Considering the collective impact of these barriers suggests that there are steps which can be taken to dramatically enhance the utility of decision support platforms/tools. The designers of these platforms can do a better job of considering the context within which information is being sought and will most often be used. The user-friendly presentation of data in formats specifically geared toward comparison and basic decision-making can go a long way in easing many common consumer frustrations. The testing of consumer functionality, through focus groups and similar techniques that engage potential users can also play a major role in ensuring that tools are capable of satisfying the most common needs and interests of consumers. Studies suggest that report cards can be positive tools in guiding consumer decision-making when the information is easy to understand. Tool developers need to be challenged to present sometimes complex information in simple formats, helping users to more easily access relevant content, apply it to their particular circumstances and understand its specific implications. This means providing assistance in breaking complicated decisions down into discrete steps and simplifying difficult tradeoffs, like the choice between cost and quality. It means making navigation easier with the guidance of simple, easy-to-understand words, symbols and graphics and giving information greater resonance through the use of color, rankings, summary tables and reinforcing narratives. It means layering information so only the necessary level of depth indicated by the decision at play is imposed. The availability of healthcare information is greater today than ever before, but mere availability is only half the battle for enhanced transparency. We still have a long way to go in making healthcare data usable for the average consumer. And, even further to ensure a good foundation for healthcare decision-making.