At MD Anderson Cancer Center, patient and family advisors are involved in a wide range of activities, including safety, process improvement, research grants, expansion of the organization's call center, and policy development.
The University of Texas MD Anderson Cancer Center is committed to involving patients and family members in a range of decision-making at the Houston-based organization.
After decades of providing directive care to patients, most health systems, hospitals, and physician practices across the country are trying to provide patient-centered care. Research has shown that patient-centered care is associated with several positive outcomes for patients, including better recovery from discomfort and concern, better emotional health, and fewer diagnostic tests and referrals.
Randal Weber, MD, chief patient experience officer at MD Anderson, says the organization's Patient and Family Advisor Program represents a leap forward in the organization's efforts to provide patient-centered care.
"If you are really committed to patient-centered care, you need input from your patients to change culture. Many institutions are provider-centered. The patient advisors are the best people to inform us about where we have opportunities to change our culture and make it more patient-centered and improve patient experience," he says.
MD Anderson launched its Patient and Family Advisor Program in 2014 with 20 founding members. Patients and family members who participate in the program are considered unpaid employees, and they receive extensive training in areas including patient confidentiality such as Health Insurance Portability and Accountability Act (HIPAA) compliance.
"They are fully vetted with HIPAA and everything else a regular employee receives training for, but they are not paid. They can sit on a range of committees such as process improvement and safety committees, and they can be privy to confidential information," says Elizabeth Garcia, RN, MPA, associate vice president of patient experience at MD Anderson.
The Patient and Family Advisor Program was almost immediately successful, and demand for advisor participation in institutional committees and research efforts soon outstripped the supply of advisors, says Kathleen Denton, PhD, MEd, director of patient experience at MD Anderson. "After a year and a half, we expanded the program, and we now have 80 advisors. We still have monthly meetings, but we also place patient and family advisors on institutional committees. They participate in focus groups. We send them electronic surveys."
Scope of involvement
The patient and family advisors have been involved in dozens of initiatives, policy decisions, and research projects, including:
- The advisors played an active role in developing MD Anderson's "Stop the Line" safety policy. Stop the Line gives staff, patients, and family members the ability to call for a pause whenever patient safety is in doubt. "We have had patients and family members say, 'stop the line,' when they were about to go into a diagnostic imaging test because they didn't think it was what the doctor ordered. Patients and family members are part of our healthcare team and can stop any procedure or process for safety concerns," Garcia says.
- Advisors sit on process improvement and quality improvement committees. For example, the advisors flagged the need to improve the functionality of call buttons in patient rooms. "We put a quality check in place for all our call bells throughout the institution. Now, every time we admit a new patient, the call bell gets checked," Garcia says.
- The advisors played an essential role in convincing MD Anderson's leadership to expand the organization's call center, Garcia says. "We extended our call center hours to cover weekends and holidays as well as evenings. We are also adding clinical services to the call center. We could have never gotten funding for our 24/7 call center without our patient advisors saying it was a need."
- The advisors requested better follow-up with patients after they are discharged from inpatient care. "In August, we launched a team that calls every patient when they go home. They ask whether the patient got home OK, how they are feeling, and whether they have their meds and their equipment. It's a mental thing—it shows that the institution cares enough to call the patient at home," says Ronnie Pace, a breast cancer survivor who is a founding member and former co-chair of the Patient and Family Advisor Program.
- Patient and family advisors were instrumental in improving parking at MD Anderson's main campus by urging adoption of a computerized red, green, and blue light parking system for guiding patients to parking spots similar to parking systems used at airports. "Because the suggestion came from the patients, that really gave the parking director the voice with the administration to get that in place. We also have a new kiosk that can tell patients exactly where their car is parked and how to get there," Denton says.
- The advisors have also helped MD Anderson researchers write grant applications.
Recruiting patient and family advisors
Patients and family members are eager to serve in the advisor program, says Pace. "The word got out that this council was the real deal, and that the institution wanted to know how we felt and how we thought about certain situations," he says.
There is a rigorous selection process for patients and family members who want to serve in the advisor program.
New members are recruited annually in July. There is an extensive recruitment outreach effort, which includes applications through My Chart and paper applications that are distributed at learning centers, the patient experience office, and the patient and family relaxation area. MD Anderson's internal communications team also advertises the advisor openings to patients and staff members.
There are three primary selection criteria to serve in the Patient and Family Advisor Program: disease-site representation, diverse representation from all populations, and experience with MD Anderson services. "If we have two candidates who are both breast cancer patients, but one has used chaplaincy, supportive care, and a variety of services, we will lean toward the more experienced candidate. We have a steering committee that makes the selections," Denton says.
The advisor selection process includes a 30-minute, on-site interview.
"You need be very careful to choose people who are in it for the right reasons. We have applicants who are going through the grieving process, and sometimes they have not worked through those issues. We want our advisors to understand that they are giving back. This is not a support group. This is about giving back to the organization and making things better for future patients and family members," Garcia says.
New advisors need to be prepared to work on meaningful projects, Pace says. "There is plenty of work to do for patient advisors who want to come in and do the job. There is no lack of opportunity. Our meetings are held once per month, and they're full of activity from start to finish."
MD Anderson's Patient and Family Advisor Program was the focus of a featured presentation at this summer's HealthLeaders Innovation Exchange in California. The Innovation Exchange is one of six healthcare thought-leadership and networking events that HealthLeaders holds annually. While the events are invitation-only, qualified healthcare executives will be considered. To inquire about the HealthLeaders Exchange program, email us at email@example.com.
Photo credit: Pictured above: Janice Finder, RN, MSN, MD Anderson Cancer Center's director of patient experience for clinical support, makes a point at this summer's HealthLeaders Innovation Exchange in California. (Photo: David Hartig)
Christopher Cheney is the senior clinical care editor at HealthLeaders.
MD Anderson's Patient and Family Advisor Program is an integral component of the organization's efforts to provide patient-centered care.
The program started in 2014 with 20 founding members and has expanded to 80 members.
Advisor candidates go through an extensive vetting process, which includes formal applications and a 30-minute, on-site interview.