Patient engagement has arrived at the station. A Google search of this phrase identified 335,000 hits, while a search of the related term "patient-centered care" yielded more than 900,000. In just the past few months, the Commonwealth Fund reported a striking degree of international variation in the extent to which patients reported engagement in their own care (1), the Agency for Healthcare Research and Quality (AHRQ) released an assessment of the role of health information technology in enabling patient-centered care (2), and the Patient-Centered Outcomes Research Institute (PCORI) announced $30 million in grant awards.(3)
The swelling interest in patient engagement highlights some confusion about exactly what it is. Patient engagement embodies consumer empowerment, health advocacy, and patient activism—activities that often play out in the state legislature or in Congress. Closer to home, it also encompasses opportunities for patient representation within the hospital or medical center on advisory councils and work groups. Finally, patient engagement is also a more intimate activity that can take place at home, in the doctor's office, or at the bedside, where engaged patients, armed with information about their condition and available services, make more informed choices about their own health care. This is particularly important when decisions, such as treatment for prostate cancer, conflict with the patients' own values and goals. Effective engagement implies that patients have the opportunity to assess the care they receive, with the expectation that others will use this information constructively to improve care.(4)
The opportunities and limitations of patient engagement—at all of these levels—are illustrated in ongoing efforts to understand the role that consumers might play in preventing medical errors and advancing patient safety.(5) There is excellent evidence, for example, that patients and families can identify and report adverse events that affect their own care or the care of loved ones. In a Massachusetts study of 998 recently hospitalized patients, patients identified about twice as many of the adverse events that took place during the hospitalization as health professionals who reviewed the medical record.(6) Using a similar approach, patient safety reporting systems designed specifically for patients' use have been piloted in Europe and in the United States.(7) In addition, advocacy and consumer organizations are increasingly interested in soliciting and sharing consumer-reported patient safety information.
Recognizing the role that consumers might play, organizations like AHRQ and The Joint Commission have disseminated materials to motivate and inform patients and families about measures that they could take to enhance their own safety.(8,9) Most recommendations—such as admonitions to bring an updated medication list to your doctor's appointments, make sure the surgeon marks the surgical site, and speak up if you have questions—have strong face validity. Unfortunately, there is little empirical evidence to date suggesting that they make a difference in safety outcomes. In fact, consumers may be confused by the number and variety of recommendations, finding many to be obvious or trivial (e.g., "Keep people medicine separate from pet medicine," and "Keep the lights on so you don't accidentally take the wrong drug").(10) And patients may find some recommendations, such as reminding a nurse to check their identification or asking a physician to wash his hands before an exam, particularly hard to follow.
Although national surveys document consumers' willingness to employ safety-oriented practices like checking the accuracy of a prescription from the pharmacy or following up on test results (11), little is known about how consistently they do so or which practices make the most difference.(12,13) In a study of 2078 patients discharged from 11 Midwestern hospitals, investigators found a two-fold difference in patients' comfort performing various safety-oriented behaviors, with marked reluctance to perform activities that patients perceived to be confrontational, such as reminding providers to wash their hands before an examination.(14) Patients fear being labeled a "difficult patient" by the practitioners on whom they depend. The acuity and severity of illness, delirium, dementia, low health literacy, and cultural factors all affect patients' ability to behave safely.(15)
Thought leaders in patient engagement have begun to deemphasize the development of motivational and educational materials for patients in favor of examining more closely the role of health care practitioners and organizations in enabling safety-oriented behaviors among patients.(16) This approach is consistent with research demonstrating that passive engagement activities, such as finding a doctor or nurse and participating in medical decision making, may have a more potent impact on reducing adverse events than the more active behaviors, such as checking medications, asking about hand hygiene, and having a family member or friend present to advocate on one's behalf.(17) Organizations that invite widespread participation—at the bedside and in the boardroom—may create a safer environment than those that rely on a small number of highly activated patients to defend themselves against medical errors. At Boston's Dana-Farber Cancer Institute, for example, new patients are educated about their role as a member of the health care team and encouraged to check their medications, ask providers to disinfect their hands, and notify clinicians of last-minute changes in their treatment.(18) Patients also serve on the Institute's board-level quality committee.
Patient engagement in patient safety offers both an inspirational and a cautionary tale for those seeking to advance patient engagement more broadly. In fashioning approaches to promote engagement, health care leaders and practitioners need to recognize the opportunities and limitations of patient participation. Patients and families, as vigilant partners, possess expert knowledge about the patient's status that may be unavailable elsewhere.(19) No one knows and understands better the patient's values and goals of care, their experience of symptoms such as pain or nausea, and their own emotional state. Patients and their families are in a position to recognize small variations in hospital processes and lapses in the coordination and continuity of their own care. Patients and families are essential partners in managing chronic illnesses and adhering to recommended therapies.
However, patients may be unwilling or unable to partner consistently or in the manner that practitioners envision. Provided with the right tools, we know that some patients and families will use those tools to their advantage. Electronic portals offer patients access to medication lists, allergy information, and test results that they may monitor, avoiding medication or diagnostic errors. Several hospitals have implemented programs that allow patients or families to activate rapid response teams, consistent with a Joint Commission standard (PC.02.01.19) that requires the hospital to "inform the patient and family how to seek assistance when they have concerns about a patient's condition." And, hospitals that welcome patient advocacy and advisory groups discover the value these groups may bring in representing the unrecognized needs of children completing cancer treatment, family caregivers, and under-represented minorities.
Promoting patient and family engagement is in the interest of health care professionals and organizations, and it is becoming an expectation as well. In a health system that is increasingly technical and subspecialized, patient engagement offers the opportunity to ground our work in the experience of the patient, and to recognize that patients and families have an active and constructive role to play—if only we let them. However, we have much to learn about which patient activities hold the most promise for improving patient safety. We need to temper our expectations of performance, taking into account capacity and enthusiasm of the patient and their family. We also need to consider the extent to which we should, as a provider community, rely on patients to ensure the safety of their own care. As we embrace the role of patients and their caregivers at multiple levels of the health care system, it will be important to ground these efforts in research that can help determine what practices and strategies work best.
Saul N. Weingart, MD, PhDVice President for Quality Improvement and Patient Safety, Dana-Farber Cancer InstituteAssociate Professor of Medicine, Harvard Medical School
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