Patient and Family Engagement: Resources Across Settings of Care
by Patricia A. Quigley, PhD MPH ARNP CRRN FAAN FAANP
The purpose of this article is to expand rehabilitation nurses’ knowledge of resources for patient engagement programs across settings of care. While implementation of these programs varies at patient, unit and organizational levels, national efforts exist to support full-scale implementation across transitions of care.
- Identify at least two patient outcomes directly related to patient engagement.
- Expand access to evidence-based patient engagement programs across settings of care.
- Differentiate strategies to engage patients and families at different levels within an organization.
The depth, breadth and scope of rehabilitation nursing practice, leadership, and impact across the care continuum sets this specialty apart from all others. Functioning among interdisciplinary teams, rehabilitation nurses teach, coordinate, and communicate the needs of patients, family members, and caregivers across all settings of care. Through education, patients gain knowledge and skills that will help them through their entire rehabilitation process and continuum of care.
In alignment with ARN Strategic Plan,1 ARN strives to be a leader in the integration of evidence-based rehabilitation practice interventions across the post-acute care continuum. One strategy to achieve this goal is to identify rehabilitation nursing interventions related to quality measures in patient and family engagement. Research shows that when patients are engaged in their health care, this engagement can lead to measurable improvements in safety and quality. In 2008, patient-centered care research demonstrated measurable benefits on functional status,2 self-care ability,2 patient satisfaction,2-4 quality of services,3, 4 and self-management.4
In 2009, the Joint Commission (TJC) raised the level of importance when they added patient engagement into their National Patient Safety Goals.5 Since then, patient engagement has evolved to mean involving patients in shared decision-making, encouraging patients to raise concerns, and maintaining a culture that encourages patient empowerment. Recently, CMS included Person and Family Engagement (PFE) as a national quality initiative.6 CMS is “Putting Patients First.” They are committed “to help bring the patient and family into the healthcare system to work on the design, delivery, and evaluation of their care.”7
Still, much variation exists in the depth and breadth of patient engagement programs, and patient education failures are still occurring. Between January 2014 and October 2015, TJC received 197 sentinel events and examined the root causes. Some of the root causes included failures in patient communication, patient education, and patient rights. TJC reported that “patient education failures were related to failure to assess the effectiveness of patient education or not providing patient education. Patient rights failures included absent or incomplete informed consent and lack of patient’s participation in their care.”8 All efforts must be increased to expand patient and family engagement, patient-centered care and patient activation (the individual’s knowledge, skills, ability, and willingness to manage one’s own health and care – TJC.8
To help you and your organization, many toolkits are available to evaluate and expand patient and family engagement programs. For example, the Agency for Healthcare Research and Quality (AHRQ)9 offers free resources for you, your team, and your patients to educate and engage residents and family members.
Some tools included:
- Family-Centered Rounds Toolkit (for hospitalized children)
- Guide to Patient and Family Engagement in Hospital Quality and Safety
- CUSP (Comprehensive Unit-based Safety Program) Toolkit – Patient and Family Engagement Module
- CANDOR (Communication and Optimal Resolution) Toolkit
- Guide for Developing a Community-Based Patient Safety Advisory Council
- Re-Engineered Discharge (RED) Toolkit
For preparing for transitions of care, AHRQ lists this resource for patients and families, Taking Care of Myself: A Guide for When I Leave the Hospital.
Patients and families are collaborating with physicians and caregivers to improve care transitions and reduce readmissions. Patients and families are encouraged to be active participants in their care and decision-making at whatever level they feel comfortable. Patients and families are sharing their stories and participating on boards, workgroups, and advisory councils in hospitals and community-based organizations.
Another innovative model is the OpenNotes Project, which allows patients to view their medical notes, and in some cases, edit documentation with the accessing physician.10
Even with all these resources, communication between and among people is complex, even more so when considering the diverse severity of cognitive impairment among the rehabilitation population. As teachers, we can facilitate engagement through confidence in our abilities to be successful educators, to provide information that is meaningful, create invitations to engage, and to offer a supportive environment. Patient engagement is achieved through a compliment of two-way communication, collaboration, and advisement. Rehabilitation nurses are responsible for maximizing this engagement, which can involve redesign of patient care delivery.
For example, in the AHRQ 2017 Guide to Patient and Family Education in Hospital Quality and Safety,11 four strategies are promoted:
- Encourage patient and family members to participate as advisors.
- Promote better communication among patients, family members, and healthcare professionals from the point of admission.
- Implement safe continuity of care by keeping the patient and family informed through bedside change of shift reports.
- Engage patients and families in discharge planning thought the hospital stay.
These strategies are promoted to help you and your team promote stronger engagement and to work together with patients and families to improve care. Each strategy has a handbook to help you with implementation, such as the bedside shift reports. Take time to identify gaps between these recommendations and what you actually have in practice. Next, your team can work together to fill those gaps through strategic planning and to integrate evidence into practice.
Allow yourself to continue to explore additional patient engagement resources that expand your patient education skills. While we are teachers, rarely do we evaluate the effectiveness of our teaching with patients and families. On August, 24, 2018, AHRQ released Health Literacy Strategies in their new Primary Care Guide to Patient Family Engagement.12 Strategies include:
- Teach Back
- Be Prepared to Be Engaged
- Create a Safe Medication List Together
- Warm Handoff Plus
Each strategy has resource and training materials to support your implementation. The new Teach Back section includes a quick start guide, and resources for patients and families, clinicians, and practice staff. Take time to explore the resources provided, as we all share in the commitment to ensure that patients have learned and understand what we communicate and teach – so that they can "teach us back."
In this article, I have shared many resources to increase PFE and health literacy. This information should be helpful and create a sense of urgency for you to enhance and redesign your PFE efforts and practices. The burden of patient harm due to failures in patient communication, patient education, and patient rights provides compelling evidence for changes in organizational systems and clinical practices to improve patient and family outcomes.
- ARN 2017-2018. Strategic Plan (https://rehabnurse.org/about/strategic-plan).
- Sidani, S. (2008). Effects of patient-centered care on patient outcomes: An evaluation. Res Theory Nurs Practice, 22(1): 24-37.
- Wolf, D.M., Lehman, L., Quinlin, R., Zullo, T., & Hoffman, L. (2008). Effect of patient-centered care on patient satisfaction and quality of care. Journal of Nursing Care Quality, 23(4): 316-321. doi:10.1097/01.NCQ.0000336672.02725.a5
- Rathert, C., Wyrwich, M.D., & Boren, S.A. (2012). Patient-centered care and outcomes. A systematic review of the literature. Medical Research Review. First published Nov. 20, 2012. https://doi.org/10.1177/1077558712465774
- Smith, L.H. (2009). National Patient Safety Goal #13: Patients’ active involvement in their own care. Clinical Journal of Oncology Nursing, 13(2): 233.
- Stern, R.J., & Sarkar, U. (2018). Patient engagement in safety. Annual perspective 2017. Perspectives on Safety. https://psnet.ahrq.gov/perspectives/perspective/243 Accessed 12/01/18
- CMS Person & Family Engagement Strategy. Sharing With Our Partners.
https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/Downloads/Person-and-Family-Engagement-Strategy-Summary.pdf Accessed 12/02/18
- The Joint Commission. (2015, Nov.). Transitions of care: Engaging patient and families. Issue 18. https://www.jointcommission.org/assets/1/23/Quick_Safety_Issue_18_November_20151.PDF Accessed 12/01/18
- ARHQ: Guide to Patient and Family Engagement in Hospital Quality and Safety
- Bell, S.K., Gerard, M., Fossa, A., Delbanco, T., Folcarelli, P.H., Sands, K.E., Sarnoff Lee, F., & Walker, J., (2017). A patient feedback report toolk for OpenNotes: Implications for patient-clinician safety and quality partnerships. BMJ Qual Saf, 26(4): 312-322. doi: 10.1136/bmjqs-2016-006020. Epub 2016 Dec 13.
- AHRQ. (2017). Guide to Patient and Family Engagement in Hospital Quality and Safety. Rockville, MD. Content last reviewed February 2017. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/index.html Accessed 12/01/18
- AHRQ (2017). Patient and Family Engagement in Primary Care. Rockville, MD. https://innovations.ahrq.gov/qualitytools/guide-patient-and-family-engagement-hospital-quality-and-safety Accessed 12/01/18