Continence Coach: Patient Engagement: What It Means, What It Takes, and Why Nurses Matter
As I compose this column, the Care Coordination Summit1 is taking place in Washington, DC. The keynote speaker is Dr. Jessie Gruman, President of the Center for Advancing Health (CFAH), an organization founded to conduct research, communicate findings, and advocate for policies that support everyone’s ability to benefit from advances in health science. Despite a decade of effort by the CFAH, including substantial funding from private sources, we still have a long way to go to realize a vision that all Americans are prepared, as consumers, to make and follow sound, well-informed, responsible choices about their health and healthcare. Recent trends supported by data remain unsettling. A literature review2 by the CFAH of 31 national surveys conducted between 2001 and 2009 found 1) more Americans perform simpler (eg, make a list of medications) than complex (eg, make informed treatment decisions) health-related tasks; 2) the majority of Americans do not actively and consistently utilize the healthcare information and benefits available; and 3) one third of Americans never utilize what is known. For example, despite all of the websites and informational tools available to the average American consumer, only 5% to 10% of all adults consider reports on quality-based healthcare when making decisions about physicians, hospitals, health plans, and other healthcare services. Of equal importance to quality outcomes is reliance on a primary care physician, yet only one in five of all adult Americans report having one.3 In short, Americans as a group are not engaged in their own care.
What exactly constitutes patient engagement? The CFAH, funded by the Annenberg Foundation, the W. K. Kellogg Foundation, and dozens of other family and corporate foundations and wealthy individuals, developed the Engagement Behavior Framework4 (EBF) based on extensive interviews, reviews of academic and advocacy literatures, and clinical reports.5,6 This white paper details what individuals must do in order to benefit from the healthcare services available to them. The publication identifies the challenges people face in finding and using safe, decent care and defines the behaviors necessary to meet these challenges. This framework provides a basis for concrete, measurable expectations for individual behavior that should guide the reorientation of care in this country toward patient-centeredness.
The Engagement Behavior Framework4 comprises 42 behaviors organized into the following 10 categories:
• Find safe, decent healthcare
• Participate in treatment
• Communicate with healthcare professionals
• Promote one’s personal health
• Organize one’s own healthcare
• Get preventive healthcare
• Pay for healthcare
• Plan for the end of life
• Make good treatment decisions
• Seek health knowledge
The CFAH believes this paper represents the first step in an effort to track and monitor engagement among vulnerable subgroups. The Center maintains better information about who does and does not perform the specified behaviors will allow stakeholders — including policymakers, payors, providers, and patient advocates — to make strategic decisions about the kind of information, guidance, and support needed by their patients, members, or constituents to participate effectively in and benefit optimally from their care. These are lofty ambitions. Others are climbing onto the policymaker platform recently spawned by concepts such as medical homes and accountable care organizations, including the Patient Centered Outcomes Research Institute (PCORI). This entity was launched by the Patient Protection and Affordable Care Act of 2010 to support research that can produce the type of information people and their caregivers need when faced with a healthcare decision. The purpose of PCORI is to provide the most reliable, relevant, and useful health-related evidence for decision makers, especially for patients and caregivers.7
However, the 21-member governing board and its 17-member methodology committee producing PCORI’s first report devoted only four out of 192 pages to a discussion of patient engagement, attached as an appendix in its draft document vetted in recent weeks for public commentary.8 Is it any wonder why we look at our 10+ year trend statistics and wonder why such a gap exists between noble, visionary goals and the real world of care and outcomes inclusive of patient satisfaction?
The CFAH organization forthrightly admits that for patients to responsibly engage actively and knowledgeably in their healthcare, health professionals and care settings must welcome and encourage patient participation. In other words, two sides must be enlightened, motivated, encouraged, and educated regarding open communication between patient and provider. The paternalistic world of medicine is no longer acceptable, nor is the patient free from responsibility for self-care and self-awareness. It is no longer acceptable to rely entirely on the wisdom of one’s provider and the unlimited generosity of an individual’s health coverage.
Outcomes measurement also is being revolutionized. Instead of relying solely on clinical measurements and judgments, researchers are finding that patient satisfaction is the best measure of, for example, hospital quality. Consequently, patient-reported information is now being used to complement objective clinical measures when assessing the quality and outcomes of patient care at institutions such as the Duke University Medical Center.9 Patient perceptions about hospital care in general and discharge planning specifically are tools that provide valuable means of measuring and improving quality of care.
Central to this entire topic is the simple fact that care happens in the trenches, not in meeting rooms of Washington, DC. Care protocols and instructions are well-known terms in nursing circles, especially among nurse specialists and nursing managers. Nurses develop, communicate, defend, and implement protocols and instructions, tracking outcomes and taking responsibility for ensuring they are followed every day, every shift, and with every patient.
The National Association For Continence believes in these principles. That is why our Centers for Excellence in Continence Care designation process is completely patient-centered and relies on patient satisfaction scores of providers to determine designation. Nurses are an essential component — both in the hospital and in the clinic — with respect to how the patient experiences and perceives care priorities, communicates needs, and, above all, engages to achieve the best possible outcomes. Are you doing all you can in your practice setting to guarantee unencumbered patient engagement to achieve patient satisfaction and desired clinical outcomes?
Dr. Muller is the Executive Director, National Association For Continence (NAFC). The NAFC is a national, private, nonprofit organization dedicated to improving the quality of life of people with incontinence. The NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence. This article was not subject to the Ostomy Wound Managment peer-review process.
1. Care Coordination Summit. Friday, September 14, 2012. Available at: www.dorlandhealth.com/care_coordination_summit/. Accessed September 11, 2012.
2. Patient Engagement Behavior Framework: What is “Patient Engagement”? Available at: www.cfah.org/activities/framework.cfm. Accessed September 11, 2012.
3. Kaiser Family Foundation. 2008 Update on Consumers’ Views of Patient Safety and Quality Information: Summary and Chartpack. Available at: www.kff.org/kaiserpolls/posr101508pkg.cfm. Accessed September 11, 2012.
4. A New Definition of Patient Engagement: What is Engagement and Why is it Important?Available at: www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_current.pdf. Accessed September 11, 2012.
5. Gruman J, Rovner MH, French ME, Jeffress D, Sofaer S, Shaller D, et al. From patient education to patient engagement: implications for the field of patient education. Patient Educ Couns. 2010;8(3):350–356.
6. Gruman J, Holmes-Rovner M, Jeffress D, Sofaer S, Shaller D, Prager, D. The Engagement Behavior Framework: A New Definition of Patient Engagement. Available at: www.cfah.org/pdfs/CFAH_Engagement_Behavior. Accessed on September 11, 2012.
7. Governance and Leadership. Available at: www.pcori.org/about/governance-and-leadership/. Accessed September 11, 2012.
8. Draft Methodology Report: Our Questions, Our Decisions: Standards for Patient-centered Outcomes Research. Available at: www.pcori.org/assets/MethodologyReport-Comment.pdf. Accessed September 11, 2012.
9. Glickman SW, Boulding W, Manary M, Staelin R, Roe MT, Wolosin RJ, et al. Patient satisfaction and its relationship with clinical quality and inpatient mortality in acute myocardial infarction. Circulation: Cardiovasc Qual Outcomes. 2010;3:188–195.
