Why It Matters
Even patient safety experts find it challenging to speak up about safety when they are the patients.
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Patient Engagement Is Easier Said Than Done — But It Can Be Done

By Susan Edgman-Levitan | Wednesday, August 7, 2019

Patient Engagement Is Easier Said Than Done — But It Can Be Done

Twenty-five years ago, a patient named Betsy Lehman died from an accidental overdose of chemotherapy at the Dana-Farber Cancer Institute. A Boston Globe health reporter, Betsy was as knowledgeable about medicine as anyone without a medical degree could be, yet her care team repeatedly ignored her attempts to tell them something was wrong.

I was devastated by the news of her death and shocked at how naive I had been about the potential harm I had faced when I had been a cancer patient only a few years earlier. I had blind faith in my clinicians and my ability to ensure my own safety. Betsy’s death made many of us realize that no one is immune from preventable harm in what is, essentially, a high-risk environment.

As clinicians, we forget that patients are often incapacitated in some of the most dangerous places in our health care system — the emergency department, the operating room, ICUs, during imaging procedures, or even labor and delivery — and cannot advocate for themselves. The power hierarchies — even when another clinician is advocating for you — are often daunting, and many people are afraid of the consequences if they speak up and are labeled as a “difficult” patient.

That realization was on my mind several years ago when I led a roundtable of safety experts — including patient and family safety advocates, researchers, clinicians, and policy makers — to develop recommendations for engaging with patients and families to reduce harm. We shared personal stories of harm experienced by ourselves or family members in the health care system. Out of this large group of safety leaders, only two had felt comfortable speaking up when they had concerns. It was a potent reminder that speaking up in a health care setting is rarely easy.

Ways to Improve Patient Engagement

Health care organizations still struggle with how to engage with patients and families to reduce harm despite evidence that shows participation and engagement in care is strongly associated with favorable judgments about hospital quality and reduces the risk of experiencing an adverse event. That’s why the National Steering Committee for Patient Safety chose to address patient engagement as one of four focus areas to include in a national action plan to reduce harm in health care.

While that work is under way, there are things clinicians can do today to increase the trust that patients and families have in their organizations:

Encourage patients and their families to raise concerns and questions. We need to affirm their efforts to understand if everything is going as planned. Create brochures and CCTV programs that help people ask questions and speak up when there is a problem. Remind them of the five things patient safety advocates recommend patients do to become more engaged in their care:

  • Ask questions about the risks and benefits of all diagnostic, treatment, or preventive recommendations until they understand the answers.
  • Bring a family member or friend when going to the hospital or to doctor visits.
  • Keep a list of medications and why and how to take them.
  • Understand the plan of action for the patient’s care.
  • Say back to clinicians in their own words what they think they were told.

Partner with patients and families to redesign care to reduce harm. Match the method of partnership with the problem you are trying to solve. Use focus groups, individual interviews, and walkthroughs to get advice. For large practices or clinical services, establish Patient and Family Advisory Councils to provide guidance and oversight. Invite patients or family members who have experienced harm to sit on your quality and safety oversight committees and participate in root cause analyses. Work with clinicians and patient advocacy staff to identify patient and family partners with these characteristics:

  • Interested in improving health care
  • Willing to share personal experiences in ways that others will listen and learn from
  • Sees the “big picture” and not just a single issue
  • Asks tough questions constructively
  • Connects with people
  • Represents the relevant experiences or conditions you are trying to improve

Ask patients to provide feedback on all your educational materials, brochures, and posters and offer evidence-based decision aids to support shared decision-making. Make sure your materials are understandable, address the concerns and questions of the intended audience, and are sensitive to different cultures and perspectives. Incorporate the approach to shared decision-making as defined by the National Quality Forum.

Make it easier for patients to get access to information about their clinical care. Consider using OpenNotes or another program designed to share visit notes and other clinical information directly with patients, families, and caregivers to help them feel more in control of their health care decisions and improve the quality and safety of care. Provide evidence-based decision aids to educate people about the risks and benefits of their options and to enhance their knowledge about their health problems.

Use patient feedback to identify trends in safety and patient experience. Synthesize the information you receive from patients — including survey data, focus group feedback, patient advocacy reports, and letters to senior leaders and clinicians — to set priorities and identify training needs.

These actions may sound daunting to implement, but organizations that embark on this path often see renewed inspiration and joy in work in their clinicians and staff as they realize how invaluable co-designing care is with patients and families. It helps them implement the most effective strategies while saving money by avoiding doing things that do not matter to patients and families. Trust increases in our health care system. These strategies are being implemented in varied and creative ways in hospitals and ambulatory settings across the world.

I leave you with one of my favorite sayings: Those who say it cannot be done should not interrupt the person doing it. We have the knowledge and experience to do this, as well as the imagination and the will. All of us deserve nothing less.

Susan Edgman-Levitan is an IHI Senior Fellow, member of the IHI Lucian Leape Institute, and Co-Chair of the National Steering Committee subcommittee on Patient and Family Engagement.


You may also be interested in:

The Patient Safety track of the IHI National Forum on Quality Improvement in Health Care

Safety Is Personal: Partnering with Patients and Families for the Safest Care

Ask Me 3: Good Questions for Your Good Health

Patient Safety Executive Development Program

Patient Safety Tools: Their Benefits and Limitations

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