Toward Health Equity and Patient-Centeredness: Integrating Health Literacy, Disparities Reduction, and Quality Improvement: Workshop Summary (2009)

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5 Breakout Groups Workshop attendees were asked to split into three breakout groups: (1) ambulatory care, (2) health plans, and (3) hospitals. Each group was assigned a moderator/discussion leader to summarize the discussion and report this content back to the larger group. This chapter summarizes the reports from the three breakout groups. The groups were asked to talk about identifying best practices and determining what needs to be done in the future in terms of chang- ing and improving the current system. ambulatory care Carolyn Clancy, M.D. Agency for Healthcare Research and Quality Best Practices In addressing best practices, the group discussed ideas such as using “asthma educators.” These are professionals who tailor instructions for use by asthma patients. David Olds at the University of Colorado has created a similar intervention using public health nurses as home visitors with new mothers of young infants.   Home visitors are typically nurses who are trained to work with new mothers in the home to assist with child-rearing strategies, maximizing child health outcomes, and maternal life course development options such as finding work or planning future pregnancies. 55 

56 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Several projects originating in health departments were also described. First, in Phoenix, Arizona, a diabetes intervention focused on training pharmacists because they were seen as a point of entry for patients into the health care system. California has several interesting projects as well. The state has had success in increasing the rates of mammography for breast can- cer screening in lower-income women. In fact, low-income women in California actually have higher screening rates than other women because of the resources spent on this effort. The issue of targeted data was also a theme for discussion regarding best practices. Targeted data can serve as a kind of com- pass or GPS system to let one know if an intervention is working or if there are problems. In this way, these interventions are data-driven public health policies. In California, for example, health department personnel used such data to drive dramatic improvements in mam- mogram rates for poor women. Cultural Competency Clancy’s breakout group also discussed the concept of being a member of a team. The team concept itself requires knowledge of and experience with cross-cultural communication. Lewin described a program at an Indian Health System care facility that required physicians to go out into the community to where people live. In this way, they had to travel to the reservation in order to see the environment in which people lived and the cir- cumstances of their lives. Quality Improvement Several tensions within the quality improvement community were discussed. First, can quality improvement be attained “one disease at a time”? Second, there is the tension between disease- focused efforts and person-focused efforts. And finally, what are the potential spillover effects from any quality improvement effects? 

BREAKOUT GROUPS 57 health plans Alicia Dixon, M.P.H. The California Endowment Collecting and Using Data Much of the discussion in the health plan group focused on California Senate Bill 853, a bill that would require health plans to systematically collect and report race, ethnicity, and language data. The widespread perception was that this would be very costly to implement. Dixon said that the group believed that the data col- lected should be standardized, and that there should be a shared baseline standard so that plans can customize their data collection in order to meet the needs of their patient population as well as the requirements of their system. Health information tools and data systems already available were discussed. Three examples mentioned were the Health Infor- mation Exchange, CAHPS, and the Healthcare Effectiveness Data and Information Set (HEDIS). The group discussed the pros and cons of each of these tools as they relate to doing a better, more sys- tematic job with data collection. The group suggested that a patient medical record be created during the fetal development period so that data can then be col- lected in a universal way, without variations across state lines. How- ever, such an approach would raise major concerns about privacy and individual consent. One source of tension, however, is that ultimately, patients do not want to be stereotyped based on the demographic informa- tion collected in health plan information systems. Understand- ing the diversity and cultural background of the patients being served is valuable; there is greater opportunity to provide higher- quality care.   Health Information Exchange—Health information exchanges provide the ability to share clinical information between organizations within regions or communities. Regional health information organizations are formal organizations that conduct health information exchanges.  CAHPS—The family of CAHPS surveys and tools, housed at the Agency for Healthcare Research and Quality, are used in a variety of health care delivery settings to assess patient experiences of care, to provide reports on performance, as well as to improve health care quality (AHRQ, 2008c).   HEDIS—The Healthcare Effectiveness Data and Information Set, developed by the National Committee on Quality Assurance, is a tool used by health plans to measure a specified set of health care metrics. 

58 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Quality Improvement, Cultural Competency, and Health Literacy The discussion about quality improvement, cultural compe- tency, and health literacy focused on two specific examples. The first example was a medication titration study with diabetes patients. A curriculum, developed at a sixth-grade reading level, teaches patients how to self-determine the level of medication needed to take better care of themselves. The second example was a hospital- based project where diabetes patients were provided with health coaches and nurses to support them in their care. Both of these programs are examples of projects that attempt to integrate health literacy and cultural competency into quality improvement. However, there are significant barriers to taking inter- ventions such as these to scale. Among the barriers discussed were labor challenges, different models of care across different health care systems, and scope of practice. Patient-Centeredness Patient-centeredness was also discussed. Expecting a patient who works to make an office visit during the workday is not patient- centered. This is one of the tensions of making systems more patient- centered. Should the system as it exists be more accommodating, or should the system assess the patients’ needs? The latter is a higher bar for patient-centeredness. hospitals Thomas Boat, M.D. Cincinnati Children’s Hospital Medical Center Quality Improvement Efforts The discussion began with the recognition that hospitals are complex places, which means that making changes within the hos- pital system is inherently difficult. Although every hospital has a quality improvement program, health disparities and health literacy are issues that rarely are recognized as important within the hospi- tal. Thus, the group noted the need to get the attention of the quality improvement leadership and the hospital management team. No solutions were proposed, although participants saw the workshop itself as a positive and important effort. One potential outcome might be courses in health literacy for hospital CEOs. 

BREAKOUT GROUPS 59 Given the complexity of the hospital environment, it is impor- tant to focus on changes that are doable and actionable. Addition- ally, it is important to show successes with quality improvement projects because success brings attention, which in turn brings more opportunities for success down the line. An example of a program that is likely to be successful is one focusing on quality improvement for interpreters in hospitals. Although this is not a big project, it is a doable project. Similarly, a change as simple as having a pharmacy in the hospital can make it easier for the patient to make the connec- tion between the written prescription and getting the information needed to take the medication in the prescribed way. Hospital–Community Communication Also discussed was the need for an interface between the hospi- tal and community programs. Although extremely important, this is a gap for most communities. When approached, communities typi- cally do not want to work with hospitals because the perception is that the hospital will just take over and tell them what to do. So how is the dialogue initiated? Although the group had dif- ferent perspectives on this, it was recognized that both parties need to feel responsible for making the linkage and figuring out the roles and responsibilities of each. Clearly, programs such as the home visi- tor model, the health promoter intervention, and transitional care providers can all amplify what it is that the hospitals do. Communication within the hospital system was also discussed. Recognizing that physicians are generally not the best communica- tors, at least a couple of groups within the hospital should be trained in communication skills (e.g., social workers and psychologists) and serve as resources and models. Besides determining who should do the communicating, the team also needs to decide what will be com- municated and how.   The health promoter intervention model involves community members whose work complements the work of the health care team with actions and interventions such as encouraging behavior change and delivering relevant information to com- munity members.   Transitional care providers ensure the coordination and continuity of health care during the movement between health care practitioners and settings as a patient’s condition and care needs change because of a chronic or acute illness. 

60 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS Collecting and Using Data The issue of data and the use of these data were again discussed. One important issue is for the hospital to determine who is the tar- get population being served. Should the target be the entire patient population, or should data be used to separate out the at-risk popu- lation that might need more attention? It is anticipated that in the future there will be individual tailor- ing around genetic information and environmental exposure infor- mation. The group also saw value in tailoring around psychosocial issues as well. In other words, the goal is to understand each patient as he comes into the hospital system—not only his needs and prefer- ences, but his individual biological, social, and emotional responses as well. general discussion Marshall Chin, M.D., M.P.H. Moderator The discussion began by asking in particular that participants focus on what should happen next to continue improvement in the areas discussed during the workshop. A participant stated that there actually has been progress in the area of developing clinical process measures such as access to health screenings. This is an area where disparities have been eliminated in many instances. For example, when considering lipid screening for diabetic patients, breast cancer screening, or colonoscopy screening, there is no evidence of disparities. What is not known, however, is whether there are disparities with regards to the outcomes. Posing a question to the group, the participant asked if anything might be transferable from eliminating the gap with process measures to eliminating disparities in outcomes. Pignone responded by pointing out that many of the process measures involve ordering tests of varying degrees of complexity. Getting blood drawn, for example, is considerably less complex than getting a patient to have a colonoscopy. Harder still is negotiating a care plan that involves self-care and self-adherence. Pignone also acknowledged that the system is especially good with care that involves profit to the health care delivery system. For services that are not well compensated in the current care sys- tem and require complex interaction and greater levels of patient- centeredness, there is less likelihood of good care. 

BREAKOUT GROUPS 61 Another participant noted that when considering process versus outcome measures, there is little effort to document the interventions themselves. It was suggested that documenting the intervention should lead to a better idea of what contributed to the outcomes. In other words, there is a need to standardize interventions so that it is clear what occurred in order to bring about change. One audience member commented that from her perspective, the first step is to understand what outcomes are desired, before processes needed to reach those outcomes can be determined. The discussion continued with agreement that interventions are not well documented in the literature, making it difficult to replicate them. Isham brought up the data issue again by emphasizing that standards are important for collecting data regarding race/ethnicity and health literacy and that these data should be collected at a national level. He suggested that the Institute of Medicine (IOM) acquire funding to study this issue. He also discussed the lack of standards and consistency across states in the collection of Medicaid data. This variation in programs makes it difficult to work with pri- vate payers. Therefore, another problem is how to encourage more consistency and standardization, not only within the government, but with private and public payers as well. Paul O’Neill, co-chair of the Forum on the Science of Health Care Quality Improvement and Implementation, stated that there is a study showing huge economic value to a system using inter- operational standard electronic records. Given the growing scarcity of resources in American society, it is unfortunate that leaders have not acted on this. Again, it was suggested that the IOM encourage this, in terms of equity, equality, and ethnicity, and make a call for action on this issue. The topic of a disease registry tool was discussed. This tool allows a physician or a health care team to review any number of patients who meet defined criteria (defined generally by their dis- ease, such as diabetes). One participant wondered if this same tool could be used to track patients in terms of their risk for poor health literacy. It was suggested that this was a risk factor that should be followed proactively by a physician or health care team. It was noted by one participant that with 2009 approaching and a pending change in the administration, there will be a great deal of interest in these issues. It is not enough, however, to focus solely on the electronic record. What also needs to be clarified is what the respective roles are within a health care team and who would have access to electronic data. 

62 TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS It was reiterated that a major challenge in this field is finding support to get this work done. People who live in disadvantaged areas have a greater likelihood for bad outcomes in spite of an inter- vention; providers and the system need to be made aware so that there is a greater likelihood of positive outcomes. The role of context was again emphasized in terms of imple- menting quality improvement, health literacy, and health disparities reduction efforts. Context includes the health care system but also the community. Multiple demands for a more patient-centered health care sys- tem are being placed on health care providers, nurses, physicians, and others providing care. But to really transform the system, it is not enough to “work around the edges”; rather, what is needed is to turn the health care system “upside down” so that it really is a patient-centered system. In closing, it was noted that as a starting point, people need assistance in finding their way through the health care system. Although there are many other reasons to improve health literacy, this is the basic foundation for improvement efforts.