Engaging patients in their care (patient engagement) is in healthcare delivery isn’t new, but the implementation of the Affordable Care Act (ACA) has made it an imperative. Susan Dentzer, editor of Health Affairs, recently described patient engagement as the “blockbuster drug of the 21st century.” While the rationale for actively involving patients in their health and health care seems obvious, patient involvement has not always been part of the culture in the healthcare system. Yet, evidence shows that when patients are engaged in their health care, they achieve better outcomes and have lower costs than those who are not involved.

Patient engagement is not without challenges. The attitudes of some clinicians stand in the way of increased patient participation. Dave deBronkart “e-Patient Dave,” a well-known cancer survivor and writer on this topic, has observed that, “Our culture assumes that doctors know everything and patients can’t possibly add anything useful.” On the other hand, some patients are not ready to accept more accountability for their own care.

Mary Jean Schumann, executive director of the National Alliance for Quality Care (NAQC), a partnership of leading organizations and consumer groups that has developed Guiding Principles for Patient Engagement, points out that nurses are in a unique position to help patients become more engaged in their care. Nursing practice has always been patient-centered and nurses spend countless hours at the bedsides of patients. They also have ongoing interactions with family members and caregivers. Moving forward, nurses can play a key role in both guiding policy to improve patient engagement and helping their organizations to design initiatives.

Patient engagement isn’t just important from a humanistic perspective; it also makes good business sense, given that reimbursement is based on patient outcomes and satisfaction.

Patient engagement = safer and higher quality care

Since the Institute of Medicine Report To Err is Human was published more than a decade ago, progress toward reducing errors and improving patient safety has been slow. A key ingredient that has sometimes been overlooked in safety initiatives is effective patient/family involvement in care and decision making. Historically, we have not always given patients the voice that they should have in questioning the care that they are receiving. Research compiled by organizations such as the Agency for Healthcare Research and Quality (AHRQ) indicates that when patients are engaged in their care, it can lead to measurable improvements in safety and quality. To promote stronger patient engagement, AHRQ has developed A Guide to Patient and Family Engagement in Hospital Quality and Safety. This guide is an evidence-based resource that can help nurses to work as partners with patients and families.

Dave deBronkart offers three practical suggestions for nurses in his book, Let Patients Help, to improve patient safety through patient engagement:

• Allow patients to proofread their medical records.
• When patients or families want to check the medications that you are giving – welcome it.
• When patients say, “I did not see you wash your hands,” thank them and do it.

Patient engagement = Higher reimbursement

The Center for Medicare and Medicaid (CMS) is shifting its reimbursement system to base payment on patient outcomes. No longer are hospitals being paid for the care they deliver without any evaluation of their success. The outcomes of care are now being measured, and financially rewarded or penalized.

Some of the challenges with patient engagement can be seen in the public reporting of outcomes measures. Originally, CMS had hoped that patients would use websites such as Hospital Compare Care to select sites for care based on a quality scorecard. It was soon learned that some of the core measures being reported were not easily understood by patients as having a quality component. As an example, the public could not interpret the outcomes data of why a patient would need a beta blocker before surgery. Patients can judge their hospital experience by completing the survey referred to as HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems). For example, patients answer questions whether the nurses and physicians explained things in a way they could understand.

Some experts believe that Meaningful Use (MU) legislation that was part of the HITECH Act leading to nationwide implementation of electronic health records (EHR) will help activate patients to become more engaged in their care. MU is divided into three phases with the ultimate goal of “improving patients’ health, reducing costs, and ultimately creating an activated patient who is an accountable, active participant in his or her care.”

The first phase involved implementation of a comprehensive EHR. Stage two of MU is now set to begin and will include requirements that providers offer patients online access to their own records and be able to demonstrate that a certain percentage actually log into their records. Research findings from the Department of Veterans Affairs, an early pioneer of allowing patients access to their records, indicates that patients felt the access improved their communication with their providers, enhanced their knowledge about their own health and allowed them to more fully participate and decide when to seek follow-up care.

Stepping up to the plate

It’s time for nursing as a profession to take the lead role in engaging patients in their care. Some may ask, “Why nursing?” while others like leaders in the Nursing Alliance for Quality Care are proposing “Why not nursing?” with our numbers, expertise and close proximity to the patients. These leaders have recommended that for nurses to foster individual patient engagement in health and health care successfully, several conditions must be realized:

• Nurses must practice a patient-centered approach to healthcare delivery.
• Nurses must embrace and support the belief that patients and families are or can become competent to engage in making informed decisions about their own health and health care.
• Nurses must be willing to support patients as they encounter obstacles in the health care system.

Healthcare reform will bring new roles for nurses to promote patient engagement, such as nurse navigator. This role has been implemented in many healthcare settings with the goal of assisting patients in their healthcare journey through the continuum of care.

An example from one of the author’s hospital is the Orthopedic Nurse Navigator, who is the liaison to the physician offices and follows the patients beginning with the preadmission process all the way through the discharge phone call 2 days after discharge. The navigator teaches the pre-op class for patients and families, which is a perfect way to start the patient engagement process. Through quarterly Orthopedic Family Reunions, the navigator also gathers feedback on how to improve the patient experience for future patients. Research was conducted over several years comparing patient outcomes of those who attended the pre-op class with those who did not. Patient satisfaction was higher and pain was lower in the class attendees. This hospital is now offering the pre-op teaching on the intranet to reach a broader patient group.

Shifting the culture

Patients view nurses as their advocates. This is evident in the yearly Gallup poll where nurses are consistently the most trusted profession. Yet not all health professionals including some nurses support the full engagement of patients in their care. Dr. George Bo-Linn of the Gordon and Betty Moore foundation observed that for engagement to be successful, patient participation must be valued and that information has to be provided in a fashion that allows patients and families to participate in a meaningful way. Most patients are not pioneers in directing and engaging in their healthcare decisions and will need help to transition to a more active role. The motivation, ability, and willingness of patients to engage are contingent on many factors including their knowledge, attitude, beliefs, and health literacy.

To create this environment for change, nurses may need to reevaluate their personal nursing philosophy and principles influencing their own practice behaviors. The environment of care also may need to change. Organizational policies and practices have a direct influence on patients’ ability to engage and become an active partner in their care. Open family visitation policies, bedside rounding, and patient-centered interdisciplinary discharge planning all promote patient engagement. The Institute for Healthcare Improvement (IHI) has disseminated research findings regarding the critical need for patient/family advisory councils. They recommend that including healthcare consumers as patient advisors will provide unique perspectives on how nurses can be more effective in fostering engagement and designing patient-centered environments.

Three examples from one of the author’s experience illustrate the effectiveness of a Patient/Family Advisory council. First, the council developed a Care Partner Program and a blue armband to designate the patient’s partner. Second, the council was instrumental in revising the visiting hours to be more family friendly. Third, two different patient education tools on heart failure were presented to the council for input on which one would be better for use after discharge. The council ended up selecting the opposite tool than was identified by the clinical nurse leaders. Today the hospital does not make a decision that involves patient care without ascertaining the patient perspective from the advisory council.

Practical tips

Creating a new culture to promote patient engagement will require some intentional work on the part of nurses. Dave deBronkart offers some practical tips that can be used by nurses to encourage patients to engage in their own care:

• Stop referring to patients in the third person as if they are not in the room.
• Let patients and families fill in the blanks on things that might be missing from their records.
• Recognize that Googling about one’s diagnoses is a sign of patient engagement.
• Adopt the belief that patients will perform better in managing their care if they are better informed.
• Understand that information alone is not enough—make it easier for patients to do the right thing by designing easy interventions and reminders.
• Work to clarify and simplify your messages when giving patients information.
• See the value in patient networking—patients with similar problems know what patients want to know.
• Welcome family interest in the patient’s care.
• Let patients scour the earth for information on their health problems and appreciate their efforts.
• Let patients help with quality and safety by valuing their questions and reminders.

Shifting the model

Historically, many patients have been dependent on their primary care providers and their nurses to direct their care. The implementation of the Affordable Care Act is shifting this paradigm. The age of the Internet has also enticed patients to get more involved. One has only to look at a website such as Patients like Me™ where more than 200,000 patients connect with one another for information on more than 1500 diseases.

As nurses, our focus needs to shift to health coaching that goes way beyond our current patient education model, which is more passive. If you truly listen to patients, you will be amazed at what the patient knows about themselves and their disease process. Getting patients more engaged in their care will reduce healthcare costs, improve outcomes, and make our care environments safer. It is a win-win for everyone involved.

Rose O. Sherman is an associate professor of nursing and director of the Nursing Leadership Institute at the Christine E. Lynn College of Nursing at Florida Atlantic University in Boca Raton. You can read her blog at www.emergingrnleader.com. Nancy Hilton is chief nursing officer at St. Lucie Medical Center in Port St. Lucie, Florida.

Selected references

Agency for Healthcare Research and Quality (AHRQ). A Guide to Patient and Family Engagement in Hospital Quality and Safety June 2013. Available at: http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/patfamilyengageguide/ Accessed December 5, 2013.

Centers for Medicare and Medicaid EHR Incentive Program Website. Available at: http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/index.html?redirect=/ehrincentiveprograms Accessed December 16, 2013

Chen P. Letting patients read the doctor’s notes. October 4, 2012 New York Times Blog. Available at; http://well.blogs.nytimes.com/2012/10/04/letting-patients-read-the-doctors-notes/?_r=0 Accessed December 5, 2013.

deBronkart D. Let Patients Help: A Patient Engagement Handbook for Doctors, Nurses, Patients and Care Givers. Creative Space Publishing Platform; 2013.

Dentzer S. Rx for the blockbuster drug of patient engagement. Health Affairs 2013;32(2):202.

Institute of Medicine. To Err is Human: Building a Safer Health System. November 1999. Available at:
http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/1999/To-Err-is-Human/To%20Err%20is%20Human%201999%20%20report%20brief.pdf Accessed December 1, 2013.

Sofaer S, Schumann, MJ. Fostering Successful Patient and Family Engagement: Nursing’s Critical Role. Nursing Alliance for Quality Care; 2013. Available at: http://www.naqc.org/WhitePaper-PatientEngagement pdf. Accessed December 1, 2013.

Weinstock M. Improving patient engagement: an interview with George Bo- Linn, MD. Hospitals & Health Networks. 2012;86(10);32-3.