Annual Perspective 2017

Background

In the past 2 decades, patient engagement in safety has evolved from obscurity to maturity. The Institute of Medicine (now the National Academy of Medicine) laid the groundwork for patient engagement when it emphasized patient-centered care in their seminal report, Crossing the Quality Chasm. Since then, calls to engage patients have become nearly universal. The Joint Commission then launched the issue to national prominence in 2007, when they identified patient engagement as a National Patient Safety Goal. In the intervening 10 years, patient engagement has come to mean involving patients in shared decision-making, encouraging patients to raise concerns, and maintaining a safety culture that encourages patient empowerment. The Centers for Medicare and Medicaid Services recent Person and Family Engagement Strategy prioritized those types of engagement in their national quality improvement strategy. As health care's movers and shakers insist on more engagement, patient engagement literature has become more diverse and mature. In 2017, studies have examined how patients would like to be involved, as well as the emergence of novel, often electronic, tools to promote engagement and revamped care models that activate patients.

Traditional and Innovative Engagement Methods

While there is broad-scale recognition that patient engagement is important, the reality of how patients are engaged is more heterogeneous. The traditional model—one in which the onus is on patients to report adverse events like medication errors or lapses in hand hygiene—remains the most common. This reporting most often happens informally during patient–provider interactions or more rarely when patients file formal grievances. AHRQ's recently developed Health Care Safety Hotline allowed patients in two New England health care systems to report safety concerns outside of the formal grievance structure—analogous to health care provider incident reporting.

Newer models invite patients to become active participants in safety culture. The Promoting Respect and Ongoing Safety Through Patient Engagement Communication and Technology (PROSPECT) study studied an electronic patient–provider messaging platform in intensive care units along with provider, nurse, and patient training to promote engagement and reduce adverse events. AHRQ's Guide to Improving Patient Safety in Primary Care Settings by Engaging Patients and Families provides resources for providers to partner with patients to improve engagement in ways that can impact safety. Other initiatives may even restructure the care model as a whole; an example is family-centered rounding in pediatrics. In family-centered rounding, the interdisciplinary team brings work rounds to the bedside for hospitalized children, enabling parents to listen and provide input into all aspects of the care plan.

Health Information Technology (IT) and Patient Engagement

Health IT is a critical tool for engaging patients in safety both in soliciting safety concerns and activating patients in their care. Sawhney and colleagues found that patients and families wanted Internet-based, telephone, mailed, smartphone application-based, and face-to-face options to report their safety concerns. These results suggest that facilitating patient engagement via multiple health IT–enabled approaches may be most effective. In a similar vein, a recent PSNet perspective discusses how patient-facing technology can enhance patient engagement. The authors describe the potential of technology to enhance engagement by making care seamless across settings, transparent, and supportive of patient self-management. They delineate barriers to health IT–mediated engagement including lack of health literacy, low technology access or skills, and unmet technical support and training needs.

Titrating Engagement to Patient Needs and Desires

Patient advocacy groups and select patient advocates like Dave DeBronkart ("e-Patient Dave") have called for all health care encounters to be an active collaboration between patients and clinicians. These patient voices have been highly influential in shaping health policy. Importantly, however, research demonstrates that the majority of patients do not demonstrate high levels of engagement. The OpenNotes project, which allows patients to view, and in some cases edit, physician encounter documentation, have demonstrated varying levels of engagement with accessing physician notes when they are made available to patients and families. In 2017, a study of patient error reporting provided more nuanced insights into why some patients engaged. They found that patients and families who viewed their care more positively were more likely to report a concern than those who perceived their care to be low quality. In another recent intervention, hospital volunteers reached out to patients to proactively solicit their concerns, resulting in high levels of patient and staff satisfaction. This finding suggests that active processes may be needed to enhance engagement.

How Patient Engagement Enriches Safety Efforts

First and foremost, patients are experts in their own care and the care of their loved ones. They consistently identify adverse events not detected through other means. Engaged patients are also more satisfied and report higher quality communication with providers. Patient engagement can improve outcomes but only when their expertise is effectively mobilized. The Patient Report and Action for a Safe Environment (PRASE) cluster randomized controlled trial found that surveying inpatients about their safety experiences had no impact on a global measure of safety including outcomes like urinary tract infections and falls. However, many PRASE participants struggled to sustain multidisciplinary teams to implement solutions to identified problems. Patient engagement may have a bigger impact when part of a multicomponent intervention that improves safety culture. The PROSPECT study led to a 30% reduction in adverse events in the intensive care unit and an increase in patient satisfaction. Patients are also effective in devising solutions to previously identified safety and quality challenges, especially as part of multidisciplinary teams. An important quality improvement intervention this year invited patients to identify barriers to colorectal cancer screening in primary care settings and codevelop process improvements.

Future Directions

This year's studies on patient engagement suggest that a one-size-fits-all approach is unlikely to meaningfully improve patient engagement in safety. The recent recognition that there is a spectrum of desired engagement should inform future work about improving safety across this engagement continuum. Patient safety efforts should meet patients where they are and normalize and support the level of engagement each patient or family wants. Engagement should also be tailored to the specific problems a health care organization would like to solve—inviting patients to improve safety culture, as in the PROSPECT trial, requires different techniques than asking patients what support they would need to complete a colonoscopy prep. AHRQ's recently published guide for patient engagement in primary care offers a suite of tools and approaches to enhance patient engagement that reflects this variability. In addition, future work should emphasize development and testing of health IT approaches that work in diverse, real-world settings.

Conclusion

In summary, patient engagement literature this year has underscored the importance of inviting patients to identify adverse events, participate in safety culture and to make meaningful improvements in health care. There is growing understanding that not all patients and families want the same type or degree of engagement. Health IT has the capability to customize the degree of engagement, but current systems are not great at doing so. The best practices around patient engagement and safety published this year merit wider dissemination and implementation.