Your Patient Safety Survival Guide
Page 16
For more than five years, the US Agency for Healthcare Research and Quality and the nonprofit organization Consumers Advancing Patient Safety have advocated for the creation of local patient safety coalitions. To date, however, community-based patient safety coalitions remain conspicuously absent. Of note, some state and national patient safety organizations exist that have the word coalition in their names and/or mention consumers in their mission statements; however, these organizations are generally professional policy-oriented groups that function more like taskforces. They are distinctly different from community-based coalitions, which actively recruit members of the general public for full-level participation and emphasize two-way collaboration between those who deliver and receive care.
The Missing Link
Think about the current reality. Technical requirements for reducing healthcare-associated infections, off-the-mark procedures, and medication administration errors are well known. These solutions involve consistent use of basic safety behaviors that are accessible to all healthcare workers. What has not yet been discovered is how to get providers to do what needs to be done. The key to making giant leaps forward, therefore, lies in discovering how to turn essential safety behaviors into consistent safety habits. It is these habits that represent healthcare’s keystone habits—the small set of safety habits that can lead to transformative progress toward eliminating the most prevalent and predictable hospital safety events. As keystone habits, a few behavioral routines stand to have a disproportionate influence on progress relative to their cost and simplicity. Rather than getting millions of people to focus on a gazillion half-measures, traction around the keystone habits represents the sort of campaign that is needed.
Because the breadth and volume of healthcare providers who must consistently exhibit patient safety’s keystone habits are so great—as are the breadth and volume of citizens who must help them get there—a people-driven, problem-solving strategy is imperative. In the United States, community coalitions excel at this kind of work. They are effective in raising public awareness and mobilizing coordinated efforts to engage the general public and healthcare providers around specific, desirable, and concrete actions.
A Coalition in Action
The story of a coalition that succeeded may clarify how powerful they can be for mobilizing wide-scale change. Local patient safety coalitions are still rare; in fact, a recent and comprehensive review of the literature that was funded by the Agency for Healthcare Research and Quality identified only two articles that represented public health campaigns around patient safety. Given the lack of evidence to draw from, I offer a summary of my experience working with a school health coalition.
As a newly minted clinical psychologist, I joined a multidisciplinary team at the Naval Hospital in San Diego. The clinic rarely saw children who had been diagnosed with attention-deficit/hyperactivity disorder (ADHD), and our team rarely handed out that diagnosis. Four years later, when my family relocated to Virginia Beach, my Naval Hospital boss had retired from the military and was in the process of setting up a comparable clinic at the pediatric hospital located in the Norfolk-Virginia Beach area. He recruited me to join his practice, where I again participated in multidisciplinary team evaluations. But this time things were different. Seventy-five percent of the children we saw had been diagnosed with ADHD or were referred to rule out that diagnosis. It also seemed that everywhere I went, from my daughter’s soccer practice to neighborhood cocktail parties, people were talking about ADHD. Believing that the condition was being terribly overdiagnosed by clinicians throughout the region (a region referred to as Hampton Roads and/or Coastal Virginia), I began asking questions and sharing my concerns with colleagues. Someone encouraged me to speak with one of the area public health directors, and she suggested that I form a coalition to address the problem.
With no prior coalition experience, I got together with others to form what came to be called the School Health Initiative for Education (SHINE). Throughout the time that SHINE existed, the question of whether children were being overmedicated for ADHD was a matter of intense national debate. Progress toward reducing overdiagnosis and treatment would have been impossible except that the coalition had engaged key stakeholders with diverse interests and perspectives. Consistent with the steps outlined in the table toward the end of this chapter,18 SHINE members “got together” (Step 1) and asked me to serve as the coalition’s chair. Next, SHINE members “got the real picture” (Step 2). They collected evidence that the community was undeniably an “ADHD hotspot.”19 Specifically, they gathered evidence that the rate of diagnosis and treatment had spun out of control, including documenting that Coastal Virginia cities were in the top 1 percent for national rates of ADHD drug treatment.20 Rather than waiting for our research data to be published, SHINE “got connected” (Step 3) and became a vehicle for sharing the evidence of overdiagnosis throughout Coastal Virginia in a timely fashion.
With the help of a steering group, SHINE “got focused” (Step 4) by creating a mission statement and establishing its major goals. It “got organized” (Step 5) by establishing a regular schedule for workgroups and general meetings. These meetings were used to support, organize, and/or facilitate parent, teacher, and provider surveys, focus groups, key informant interviews, and analysis of new and extant databases. Based on the resulting community needs assessment, the coalition identified four major gaps in ADHD care: systematic behavior management in schools, school-provider communication, teacher training and education, and parent training and support. These were not the same issues that any one person or group would have independently identified as most important, nor were they topics that would have received widespread support had they not been generated with input from the community coalition: parents, teachers, clinical providers, school administrators, and other interested parties.
Everyone “got to work” (Step 6). With support and input from the community, my colleagues and I were able to write winning grant proposals and quickly secure local, state, and federal grant support to implement and evaluate the effectiveness of interventions for each of the community’s self-identified gaps. SHINE’s support from diverse community factions also made local officials more amenable to us conducting research and intervention projects in their school districts—something that often represents an insurmountable barrier to researchers. In addition to writing letters of support for funding applications, SHINE members served as an advisory group for research and intervention projects, monitoring progress and helping to remove barriers to their success when necessary.
One of our federally funded projects was a schoolwide, positive discipline program. It resulted in ADHD symptoms decreasing among elementary school students from the beginning to the end of the school year. This project also documented that teachers who adopted positive classroom management strategies had students who scored significantly higher in every subject area of the Standards of Learning tests administered to public school students across the state of Virginia.21 SHINE members assisted with removing obstacles to piloting a program to facilitate communication (with parental permission) between parents and providers of children who were diagnosed with and/or treated for ADHD. The coalition also developed the single-page ADHD Diagnostic Checklist to remind or apprise parents, school personnel, and providers of the necessary steps to completing a comprehensive ADHD diagnostic assessment process—a handout that they prepared for distribution in clinics and schools throughout the region. They also created easy-to-read School Health Bulletins that were endorsed by the Virginia Department of Education and made available to parents and educators in schools around the region. And SHINE members successfully developed a bill that was passed by the Virginia Legislature that prohibited teachers from recommending ADHD medication to parents.
Finally, the SHINE coalition also “got proof” (Step 7) that their efforts had worked. From about 2000 to 2004, the Coastal Virginia region witnessed a 32 percent decrease in th
e rate of ADHD diagnosis and drug treatment—something that was not happening in other parts of the country.22 While powerful pharmaceutical marketing campaigns were contributing to the overdiagnosis of ADHD nationally, the SHINE coalition was able to substantially reduce the number of children in Coastal Virginia who were diagnosed with the condition.23 (Anyone who is familiar with mental health trends can appreciate how extraordinary it was that Coastal Virginia cut the number of children who were diagnosed with ADHD by one-third.)
Interestingly, parents in the Coastal Virginia region had reported greater satisfaction with behavioral interventions than drug treatment, although their children were far more likely to receive drug treatment than other interventions. To expand participation in parent training, local researchers and practitioners secured local, state, and federal funding to develop and implement a unique approach to marketing parenting classes. The program—the A+ Behavior Program: Helping Your Student Excel in School and at Home—experienced unprecedented levels of parent participation. It was so well received that all five districts in southeastern Virginia subsequently arranged for their psychologists and/or guidance counselors to receive training and supervision to deliver the program throughout the region. Some of the participants in this train-the-trainer program were affiliated with the Virginia Beach City Public Schools clinical psychology internship program and, together with SHINE members, created the first-ever public health psychology internship in the country—a program that was approved by the American Psychological Association.
That an innovative parenting program quickly morphed into a train-the-trainer initiative that was supported by five school districts with a goal of establishing a program in every elementary school across a region with a population of over 1.7 million and helped to spearhead the formation of the first-ever public health psychology internship program represents the sort of spontaneous accelerations of progress that coalitions and positive deviance efforts are known to generate. Without the SHINE coalition, barriers to appropriate care and solutions for reducing ADHD overdiagnosis and overtreatment that the community identified, supported, and evaluated might have remained invisible in plain sight. The coalition created opportunity for giant leaps forward in the delivery of evidence-based care to children with school-related behavioral problems.
While Coastal Virginia was reducing the rate of ADHD drug treatment among its children, the problem was escalating in other areas of the country. In 2013, the Centers for Disease Control and Prevention finally acknowledged that the debate about ADHD overdiagnosis had been settled; undeniably, ADHD was being overdiagnosed in communities in every single state.24 One of the leading industry-funded professionals who had long advocated for expanding ADHD diagnosis and drug treatment—an author of one of the most popular ADHD diagnostic instruments—also finally spoke out. Clinical psychologist C. Keith Conners, professor emeritus at Duke University, declared ADHD drug treatment to be a “disastrous epidemic of dangerous proportions.”25 By then, so many misdiagnosed children had been growing up and showing up on college campuses with stimulant drugs in hand that the country was experiencing an epidemic of ADHD drug abuse and addiction among college students and young adults.26 However, also by then, thanks to efforts of SHINE, Coastal Virginia communities were no longer leading the nation with respect to ADHD overdiagnosis and associated drug treatment. Had the coalition “gotten recognized” properly (Step 8), its successes may have spread to other communities. Reasons why this did not occur have been documented in “Shooting the Messenger: The Case of ADHD,” an article that is freely available on the Internet.27
Table 6.2.
PUBLIC ACTION PLAN
Build Local Patient Safety Coalitions
1
Get Together
Convene a meeting of people interested in the topic of patient safety and use the opportunity to share ideas with other members of your community who might be able to help form and guide a coalition.
2
Get a Real Picture
Establish a steering group that represents your community’s diverse interests in patient safety, making sure that the group is capable of gathering data to paint a realistic picture of the problem at the local level.
3
Get Connected
Brainstorm and leverage all available organizations and groups in your community that are interested in improving patient safety, have knowledge about improving safety or health outcomes, or have a strong sense of civic responsibility. Create a system to ensure that all interested parties are informed about the work of the coalition. Recruit a core group of citizen members.
4
Get Focused
Narrow in on the aspect(s) of patient safety that the coalition will address initially and develop a mission statement to give everyone a sense of what you are working toward.
5
Get Organized
Establish major coalition goals and related working groups. Collaboratively decide what strategies will logically reduce the identified problem(s), and how you will measure, monitor, and report progress.
6
Get to Work
Create an action plan that defines who does what, by when, and how. Recruit additional members and volunteers as needed.
7
Get Proof
Gather information to determine whether you produced the amount of change desired by the coalition. Assess what strategies worked well, which ones were not effective, and next steps.
8
Get Recognized
Share your success. Announce your achievements through the coalition and the media, soliciting new members to sustain and expand coalition efforts as appropriate.
Taking Stock and Mustering Courage
Almost anybody with a passion to improve patient safety can serve as the impetus for making positive change in his or her community. When I initiated conversations about ADHD overdiagnosis in my community, I was shy, reserved, and terrified of public speaking. I knew nothing about conducting community needs assessments, how coalitions operated, or that such things even existed. At the start, it is not essential to have a detailed understanding of how coalitions operate or how to get them funded. Plenty of information and people are available to guide the process once this becomes a decided course of action.
For anyone who wants to champion the formation of a community coalition, it may be helpful to have a summary of what we’ve learned about the patient safety crisis from a public health perspective.
The Crisis
Medical errors are now a leading cause of death in the United States.28 Every hour, nearly forty patients in US hospitals die as a result of preventable healthcare-induced harm, resulting in billions of dollars of excess healthcare costs every year.
Healthcare-associated infections, off-the-mark procedures, and medication administration errors represent three of the most prevalent, predictable, and preventable types of patient safety events.
Human Error
Healthcare’s most prevalent, predictable, and preventable patient safety events are tied to simple human errors.
Every provider is prone to commit the sort of errors that contribute to the most prevalent, predictable, and preventable patient safety events.
Safety-Critical Habits
Simple and essentially cost-free safety habits exist that have the potential to prevent the most prevalent, predictable, and preventable patient safety events.
Environmental cues help everyone form and maintain safety habits, but the healthcare industry has a long history of downplaying the need for such prompts.
Patients have the potential to cue providers about safety habit oversights at critical junctures during the care process, but they have not been adequately prepared to serve in this capacity.
Providers have the capacity to respond positively when patients speak up when they observe specific safety oversights, but they have not been adequately prepared to do so.
Effective Patient-Provider Engagement
Raising public awareness about the patient safety crisis is an important first step in engaging patients and their families; however, other supports must be in place to help patients and family members use the information to speak up for safety and to ensure providers respond effectively.
Public health strategies are most powerful when they are tailored to meet the social, cultural, and economic reality, priority, and capacity of a given community.
Community-Based Patient Safety Coalitions
Community-based coalitions are a proven method for raising public awareness and pooling resources to identify, implement, and evaluate community-responsive solutions to public health problems.
Nonprofit and government agencies have advocated for the formation of community-based patient safety coalitions, but they remain conspicuously absent.