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6 Concluding Discussion George Isham, M.D., M.S. HealthPartners Moderator The audience was asked to reflect on the entire workshop and to ask questions of any of the speakers who presented during the day. One participant remarked that the lack of standardization of personal health records (PHRs) and electronic health records (EHRs) is fascinat- ing. It is encouraging that there are efforts to develop standards for the interface of these two and there appears to be a great deal of opportunity for developing display approaches and tools that address some health literacy concerns. Yet there is much that is unknown about how a range of people with differing skill levels and different education levels can understand and effectively use these tools. A digital divide remains, with the people on the wrong side of the divide tending to be the people with poorer health status and poorer health outcomes. Gauthierâs position that patient-centered care equals user-centered design is a great summary of what needs to be done, the participant concluded. One participant commented that Susannah Fox suggests that, rather than thinking of Internet use in terms of a digital divide where every- one can be classified as being in one camp or anotherâlike an on/off switchâit makes more sense to think of the situation in terms of a ther- mometer where everyone is on a continuum of use and everyoneâs use is increasing. Another audience member said that she believes there is a need for standardization in the exchange of information among PHRs and between PHRs and the EHRs. However there is a danger in rushing too quickly to standardize before there is enough information about what is impor- 85
86 HEALTH LITERACY, eHEALTH, AND COMMUNICATION tant. Another issue in standardization is that peopleâs expectations and desires about how things look change over time. If there is not room for modification, people may not pay attention to a site or to the available information there. Another participant noted that many of the presenters talked about the importance of obtaining user feedback and observing users, which is very important in the development of these health information technol- ogy (IT) systems. Kukafka commented that while there may be a need for standards in terms of exchange between systems, there has been little discussion about tailoring or personalizing content, which is what the data and research indicate people find most salient. It appears that people today want something targeted specifically for them at the time they need it. If one can assess a personâs literacy level, one can provide that person with exactly what he or she needs. One is spared the issues associated with population-based approaches to communication, issues such as whether one should present all information at a 6th-grade level. What happens when the information is at a 6th-grade level but the person accessing it is at the 12th-grade level? Does that put them off? In terms of improving health, providing individuals with tailored messages may well be a suc- cessful approach. Tailoring and personalizing content are critical, Seidman agreed, not only because of issues such as health literacy, but also because content needs to be provided at the action level. For example, in attempting to get someone to quit smoking, providing information to that person if he or she is in the pre-contemplation stage will not be as effective. Another issue, one participant said, is whether measurements should focus on process or outcome. That is, should one measure what needs to be learned concerning an individualâs interaction with information technology, or should one measure whether the interaction between an individual and the technology resulted in that person doing what he or she shouldâfor example, taking the medication appropriately? What does it take to get the proper reaction or behavior? It was pointed out that many people using the Internet or other IT tools are not looking for information in order to take action. Instead they are trying to understand something they have just been told. One participant said that in the broader eHealth world it does not appear that the people designing health information technology (HIT) systems have an understanding of the issues of health literacy or their importance. Yet there have been several presentations about development of systems that did focus on the health literacy needs of their users. Is there any guidance that the presenters can give about how to bring these issues to the broader eHealth world?
CONCLUDING DISCUSSION 87 Marchibroda responded that, currently, health literacy is separate from the development of HIT systems. The focus is on putting electronic health records into physiciansâ offices and helping emergency rooms to obtain data. The focus is very provider-centric in other words, and there are many barriers to that adoption. Consumer-facing applications are happening in some areasâWhatcom County, for exampleâand per- sonal record organizations are working directly with employers or health plans. To bring health literacy more broadly into the development of HIT requires addressing some of the barriers to implementation, particularly making the business case. There are also other things that could be done, Marchibroda contin- ued. The first is raising awareness of how important health literacy is in the development of these systems. The second is raising expectations of what is expected from providers in terms of health literacy. In terms of measurement, one might start with some process measures but what ulti- mately drives change is what is rewarded in health care. It is important to show that obtaining higher-quality health outcomes requires more effec- tive consumerâclinician engagement and understanding. The questioner responded that focusing on improving physician understanding of health literacy may result in the kind of situation that now exists with IT systems for prescription medications. That is, the systems are designed for ease of communication between the pharmacist and the physician, but that does not necessarily have anything to do with increasing patient understanding about taking medication. Seidman said that there has been a great deal of conversation about health behavior change and how to get individuals to make different choices or to learn certain skills. But it is important to remember that people are embedded within communities and individual practitioners are embedded in organizations. Perhaps some of the largest gains could be made by looking at that bigger picture. Systems are critical, he continued. Many approaches assume that everyone has the same advantages. However, those who are poor, unwell, or uneducated have many things working against them. For example, the action taken in the Arizona Medicaid program to give people e-mail addresses was a system action. Going to where people are rather then expecting individuals to take responsibility is a shift in organizational thinking. Such a shift would include creating health-promoting types of systems that help develop literacy cultures. The wiki has been discussed before. The power of the wiki is that there are a number of people working together, beyond the individual. One is actually tapping into the system in which those people are embedded. One participant said that in order to make sure decent electronic health records are widespread one should work with the patients, the
88 HEALTH LITERACY, eHEALTH, AND COMMUNICATION consumers, and the families. Health providers will demand integrated systems when patients arrive at their offices saying things like, âHere is my electronic health record. Why canât you download your standard information to me? Where are my MRIs? You should be able to e-mail those to me or put them on my thumb drive.â The Commission on Sys- temic Interoperability took the position that more people need to demand interoperability. If that were done, health providers would be motivated to demand integrated systems. Isham concluded the session by saying that many important ques- tions remain about the integration of health literacy with developing HIT systems. For example, do the current methods used for assessing health literacy apply to the humanâIT interface? There were many anecdotes throughout the day about how people interact with their machines and their PDAs and about how games are important. Are the NAALs and the other tools for assessing health literacy valid for assessing how effectively people understand and use information to improve health when that information is mediated through technology? Another question for future exploration relates to the source of the $86.6 billion in savings spoken of earlier that it is estimated will be real- ized from the implementation of health care IT systems. While some might find it difficult to understand how such savings will accrue, it is likely that the interface between people and IT machines is a critical com- ponent in harvesting that savings. Perhaps if we understood that interface better, many would think that health literacy contributes more to savings than is currently realized and, therefore, would conclude that it is a much more important objective for Healthy People 2020 and other efforts.