Quality Talk

Susan E. Sheridan, MIM, MBA, became involved in patient safety after her family experienced two serious medical systems failures. Her husband, Pat, died in 2002 after his diagnosis of spinal cancer failed to be communicated. Their son Cal suffered from Kernicterus, a condition that causes brain damage, five days after his birth in 1995 when his neonatal jaundice was left untreated.

Sheridan is the co-founder and past president of Parents of Infants and Children with Kernicterus, which works in partnership with private and public health agencies to eradicate the condition. In 2003, she co-founded Consumers Advancing Patient Safety, a proactive partnership between consumers and providers of care.  Sheridan was president of CAPS from 2003-2010 and continues to serve on its board of directors. In 2004, Sheridan was asked to lead the World Health Organization’s (WHO) Patients for Patient Safety initiative.

Can you give us a general overview of Consumers Advancing Patient Safety (CAPS) and its mission?

CAPS was formed eight years ago by a variety of stakeholders, including patients who had experienced patient safety events, health care providers, accrediting agencies, educators and legal system representatives. With initial funding from the U.S. Agency for Healthcare Research and Quality (AHRQ), we created CAPS to encourage collaboration between patients and providers, with the goal of creating a safer and more just health care system. We are not only focusing domestically, but also globally. For example, we have been working with WHO and believe our model can be replicated in other countries.

Why should patient engagement matter to providers?  What would you say to someone who thinks this threatens the clinician’s professional role?

There are credible data to support the notion that if patients are engaged, they’ll have better outcomes, and as a result, doctors will have better outcomes. These types of statistics have motivated doctors to engage patients. 

Of course, any kind of change can be threatening to people. We anticipate some pushback, and we conduct workshops on this issue. Once participants see how successful an active patient approach is and that patients really care and desire to collaborate with their care providers, it’s a matter of time before they change their viewpoint.

What does patient engagement really look like?

We believe the true definition of patient engagement is redesigning the healthcare system with the patient, from the micro to the macro level. Using this definition, patient-centered care can be the individual patient being engaged in his or her own care, as well as patients helping to shape public policy.

Patients should be empowered to help co-create patient safety materials, report patient safety events, engage in focus groups, test messaging or make other contributions. They should know their medical/medication records and have an understanding of medication reconciliation and transitions of care. We also need patients on boards of directors and doing facility walk-arounds with health care leaders.

This is a broad definition of patient engagement, but this is what really needs to happen to drive quality improvement and make an impact.

What kind of steps and measures can healthcare providers implement immediately to improve their patient engagement?

Based on surveys conducted by WHO, what patients really want is an “invitation” to participate in their own care and to have a seat at the table in all decision making, from personal care plans to co-designing policies. Starting today, doctors and other health care providers should invite patients to participate in their care, from asking questions to collecting records and reporting patient safety events.  Health care agencies, hospitals and professional organizations should also be reaching out to the consumer population to invite them to participate in committees, panels, etc., to help design the future of our health care system. I believe that the wisdom and experience of the health care consumer is one of the richest untapped resources that can help transform patient safety. 

Another thing that can be done fairly quickly is to start developing patient and family safety councils at hospitals and other health care facilities, which can really drill down on safety and quality issues. These councils can help lay the foundation for patient engagement by bringing patient and family perspectives to institutional conversations about safety.

What can patients do to become more engaged in their care management?

Patients should meet with their doctor early on and tell them that they want to be fully informed and to partner in the process. For example, with my husband’s doctors, I asked to be a full partner in the process to assure that he had good outcomes, and they were very receptive to that. Patients and advocates have to be upfront with their desires in order to maximize their involvement in care management.

How can QIOs partner with CAPS to further mutual goals to improve patient safety and patient-centeredness?

QIOs can partner with CAPS to develop patient and family safety councils, which can be a powerful phenomenon. CAPS can also conduct workshops with QIOs, patients and community stakeholders to develop patient-centered strategies to drive quality and safety. A decade ago, I didn’t know what a QIO was. CAPS can help raise awareness of QIOs in the patient world. In return, QIOs can invite patients and CAPS representatives to become involved in safety initiatives, speak at events and help the QIOs successfully and authentically achieve their goals.

I would also encourage QIOs to visit our website (http://www.patientsafety.org) and review the outcomes of our workshops and patient engagement initiatives; there are some great, creative ideas there. Now is the time to create partnerships we never imagined before.

How has your personal experience with the healthcare system shaped your view of patient safety and patient engagement?

My personal experience has shaped my entire perspective. Because my son has brain damage, I have a daily reminder of the gaps in our health care system. However, given where our government is right now, and what they are saying about patient engagement, it makes me hopeful that through innovation, creativity and guts, we can make a significant difference if we bring patients to the table. That excites me.