Published in: Hospitals and Health Networks
Issue/Volume: February 19, 2008
Written by: Patrice Spath

2/19/2008 – Most hospitals encourage patients to speak up if they have concerns about their care, but few include them formally in quality improvement initiatives. Hospitals may be reluctant to embrace such partnerships, citing reasons such as resource shortages, patient population differences or legal worries.

“The greatest barrier to involving patients in the work of safety improvement is providers’ fear of the unknown,” says Rosemary Gibson, senior program officer at the Robert Wood Johnson Foundation. “Many health care organizations have never done this before, and there is some trepidation surrounding such involvement.” Similar fears were voiced by providers in 2001 when the Joint Commission required that unanticipated events be disclosed to patients.

Yet a properly managed disclosure process has proven to be beneficial for organizations as well as patients. Hospitals that are adding patients to unit-based committees, hospitalwide quality improvement teams and the patient safety committee include the Dana Farber Cancer Institute in Boston, Cincinnati Children’s Hospital, and University of Washington Medical Center in Seattle.

These and other hospitals that include patients in safety initiatives are finding the experience rewarding, but not without its challenges.

One Hospital’s Journey

More than five years ago, Passavant Area Hospital, a 93-bed facility in Jacksonville, Ill., asked a former patient to evaluate consumer educational materials for their Help Us Help You campaign, which was intended to empower health care recipients to speak up and ask questions of their care providers. “The individual’s input on this project was exceptional,” says Connie Mudd, vice president of quality management at Passavant. “However, at the time, we never considered adding someone from the community as a permanent member of the patient safety team.”

Passavant, like many hospitals, continued to solicit improvement suggestions on customer satisfaction questionnaires. But recently, the quality council at Passavant approved the appointment of three people from the community to the hospital’s patient safety team. “It’s been a journey for us,” says Mudd. “Our passive system of surveying patients has yielded some good suggestions, and our experience several years ago in developing consumer-oriented education materials was very positive. The time is now right for adding consumers to our patient safety team. We’ll have a new and potentially more valuable opportunity to understand the patient’s point of view.”

Selecting Patient Partners

“Choosing people to work with the hospital at improving safety is just like hiring a consultant,” says Gibson. “First determine the attributes you want in those people—such as an interest in improving how you care for patients and willingness to devote some time to this effort. Then go out and find people who fit your job description.”

Whom to invite to join the patient safety team was a question deliberated for quite some time at Passavant. “Once we’d committed to adding consumer representation, we then began putting the plan in place,” says Mudd. “Questions such as ‘How many consumers and who?’ had to be answered. At first we considered adding only one consumer, but we were afraid that being the only non-hospital person on the team might be intimidating. We also agreed to have a representative from one of the minority populations in our community. We ended up inviting a former governing board member who is also a frequent hospital patient, a former patient and member of the African-American community, and the wife of a patient who had expressed dissatisfaction with the care provided to her husband.”

“Former patients or family members who have had bad experiences in your hospital can be valuable contributors to your patient safety work,” says Dan Ford, patient and family advocate and vice president of Furst Group in Phoenix. “Identify people who can contribute in an objective and constructive manner and are willing to speak up.” The patient safety team at Passavant had some reservations about inviting a dissatisfied family member to join the team. However, past experiences had confirmed this person’s commitment to making a positive contribution to the hospital’s quality efforts.

Unfortunately, people who fit your requirements, especially in smaller communities, may not be easy to find. “It’s hard to find patients who will talk badly about us,” says Roger Pearson, CEO at Ellsworth County Medical Center, a 20-bed hospital in Ellsworth, Kan. “It’s not that our hospital is perfect. It’s just that people are very reluctant to criticize their local provider.”

Preparing Partners

Meeting with hospital staff to discuss safety issues is a new experience for patients and family members, and they need to be adequately prepared. “It’s important to remember that consumers are also fearful of the unknown,” says Gibson. “They need to know what’s expected of them and how their involvement will help improve patient safety. They need to be reassured that the experience will be meaningful and not a waste of their time.”

Prior to their first meeting with Passavant’s patient safety team in January 2008, the community representatives received an orientation to the hospital’s patient safety initiatives.

During the hour-long orientation, Connie Mudd and Dr. Steven Lillpop, chair of Passavant’s medical staff performance improvement committee, provided some history of the hospital’s patient safety initiative and explained the role of the patient safety team as well as other hospital committees. The consumer members were introduced to the Joint Commission national patient safety goals and learned what Passavant is doing to achieve compliance. Current patient safety survey data were shared and improvement opportunities noted.

“During orientation, the consumer members were very engaged in our performance measures,” says Mudd. “They asked how we evaluated hand hygiene compliance and were interested in the medication issues, with one of them suggesting that patients needed to be much more involved in that process. Their enthusiasm for being members of the team was clearly evident.”

Besides sharing information with the community representatives, another goal of the orientation was to reinforce the value of input from patients and families and the way this input can be used to make further improvements in patient care. Hospital representatives also made it clear that some ideas for improving care may not be feasible, but this should not dissuade the community representatives or anyone on the patient safety team from making recommendations.

If laypeople are reluctant to criticize the hospital, Ellsworth’s CEO Roger Pearson suggests asking patients to share stories about unsafe experiences at other hospitals and then using this input to make local improvements.

Researching Legal Protections

Any time the topic of consumer involvement in internal hospital affairs is raised, the issue of confidentiality always comes up. “When involving patients in safety committee activities, one has to make sure that state peer review and patient safety statutes and regulations are carefully reviewed,” says James W. Saxton, chair of the health care litigation group at Stevens & Lee in Lancaster, Pa. “Do this before sharing patient safety data with patient advisory groups or appointing consumer members to your patient safety committee.”

Some state statutes and regulations provide a lot of confidentiality protection for patient safety information, especially those states, such as Pennsylvania, that have adopted mandatory incident reporting regulations. However, many hospitals must rely on their state’s peer review protection statute to maintain confidentiality of patient safety activities. “In these states, hospitals risk waiving the peer review protections if specific peer review patient safety information is voluntarily disclosed to former patients or family members,” says Saxton.

There may be more guidance coming with regard to patient safety disclosure once the government releases regulations to implement the Patient Safety and Quality Improvement Act of 2005. “Hospitals do want to include patients in safety efforts,” says Saxton, “but without adequate legal protection, hospitals must be careful not to jeopardize state law peer review protections. I am not saying patients could not be a valuable contributor. I think they certainly could be. However, let’s be careful about the process and involve legal counsel.”

Protection of potentially sensitive patient safety information was a concern for Passavant leaders, especially because community representatives on the patient safety team would have access to meeting minutes and aggregate incident data. “During our discussions about adding patients to our safety team, fears about loss of confidentiality were expressed,” says Mudd. “And while these fears are real, leadership is committed to getting input from our patients. We didn’t let our fears get in the way of our goal.”

At Passavant, consumer members of the patient safety team were asked to sign confidentiality agreements to ensure that team discussions and safety information are not publicly disclosed. In addition, specific patient incidents and safety-related practitioner performance issues are discussed only at the quality council level.

Building Relationships

Not all hospitals are ready to invite patient or family representatives to serve on improvement teams or safety oversight groups. “A key determinant is the culture of the organization,” says Gibson. “If patients are considered integral to the work of improvement, their safety concerns and suggestions will be welcomed and acted upon. Organizations must build up to this; it doesn’t happen overnight.”

Ellsworth County Medical Center has a consumer advisory group that meets quarterly, but the group has not been formally invited to work with the hospital on patient safety initiatives. “We get suggestions from patients and families on a case-by-case basis,” says Cathy Harshbarger, Ellsworth’s director of nursing. “For instance, if an elderly patient falls, we’ll ask the family what we could have done differently to keep this from happening. We are very open to learning from our patients and families, and they are becoming more willing to make suggestions. At some point, we may involve them in a more structured and proactive way.”

For Passavant Area Hospital, after patient safety partnerships started with the Help Us Help You initiative and patients and caregivers became comfortable with this new relationship, the time was right for moving to the next level of patient involvement—adding community members to the hospital’s patient safety team. “If patient and family involvement on the team is found to be beneficial, which we think it will be, then we’ll look for ways to increase consumer input,” says Mudd. “Expanding the membership of the patient safety team is just one more step in our patient partnership journey.”