Giving patients a seat at the table

Improve care by getting patients involved

If you talk about giving patients a voice in how a hospital works and care is delivered, you will see many providers and administrators blanch with fear. But putting patients at the table can be a great way to learn how what you do affects the people you do it for. Further, according to the new National Strategy for Quality, released to Congress at the end of March, getting patients involved in quality improvement and patient safety efforts is going to be a requirement.

The topic is one that riles Grena Porto, RN, MS, ARM, CPHRM, a principal at QRS Healthcare Consulting of Wilmington, DE, which specializes in quality, risk, and safety consulting. "Most organizations aren't ready to embrace this," she says. "And when they do, they opt to choose 'patients' who are not really representative, like the hospital attorney who was a patient several years ago. Once I heard of a hospital appointing their retired risk manager as a 'consumer representative.'"

That legal eagles are acting as patients just illuminates one of the main fears hospitals have in getting patients involved in the inner workings of healthcare: Patients will learn things that will entice them to sue. "I do not think the fear is rational," Porto says. "There are people who put the fear of God into others about the potential legal hazard, but it is overblown and stupid and not a viable argument."

To patients, it seems like a no-brainer to ask their opinion. "They have at least as much information about how the system works as anyone who provides care," Porto says. "Patients know things, and the things you are worried about them finding out? They already know them, too."

If you want to understand how patients process care and how to improve it, you have to see it through their eyes, says Michael Leonard, MD, a principal at Pascal Metrics, a Denver consulting firm that specializes in leveraging clinical and technical expertise to create platforms to improve care and effectively measure the result. "There may be 120 people over five days involved in a heart patient's care. The patient and the family experience it as a social process — were you nice, did they know what was going on, did they have a voice? We keep score technically in a hospital, and that's where we disappoint them."

Understanding the patient experience — their stories — is vital. The fear keeps them out of the loop, says Leonard. "When things go wrong, they aren't told or acknowledged in most organizations. The fear is that they will know that we make mistakes. But 40% have experience with medical mistakes, and 66% have had one or know someone who had an error made. They already know."

So if the fear is based on something that isn't real, you have to find a way to get over your discomfort. "If you do, you can learn in a profound way."

It is a fundamental shift to bring the patient to the table, but necessary, Leonard says.

"Remember that no one comes to the hospital on a good day. They walk in and are often told to go wait, and then they are ignored. They perceive this as neglect, and you are automatically in service recovery from the start. Being aware of what it is like to be scared when you come into the care system, and then to redesign it around the experience you would want is powerful," he says.

Where to start

Most organizations start by getting patients involved with a patient or family advisory committee. Among the leaders in these efforts are children's hospitals. At Children's Hospitals and Clinics of Minnesota in Minneapolis, Tessa Billman started out as a family advisory member for five years before being hired a couple of years ago as the family coordinator. Now, she coordinates all family involvement in the system.

She says participation is highly standardized, whether it is the family council, or the youth council, which is made of up current and former patients and their siblings. Family council members have to have a family member of someone who has received care at the hospital. If they experienced a loss, they have to be two years out from that loss to participate. On the youth council, participants may be active patients or former patients. There are up to 17 members on the family advisory council with a range of outpatient and inpatient experience from the various clinics and two hospitals in the system. They work hard to have a good geographic and demographic range of participants, says Billman. Currently, there is one Spanish speaker on the council; the hospital provides an interpreter.

While 17 members is the ideal, and there are usually more applicants than seats, Billman says they would rather have fewer appropriate members than just put bodies in the chairs. The people who apply are all interviewed in the fall and start their terms of service in November. (A sample initial application)

Unlike many facilities, Children's provide a $25 honoraria for members for each meeting. They also pay for parking and reimburse for childcare and mileage, and they provide a meal at every meeting.

Rapid response teams

The members steer the committee, but Billman is there to advise on political or business roadblocks to their ideas. Other members of the council include a foundation member, an ED physician, a NICU nurse, and the director of child and family services.

Among the issues they have worked on was rapid response teams being family activated. Leonard mentions that when this idea was broached at one hospital he knows of, the staff were concerned that patients and families would call when their meals were cold or for other inappropriate reasons. The fears were never borne out.

Billman says the family advisory council worked on creating the brochure on family activation. She likes to note that every single rapid response team call in the first months resulted in a change of level of care.

Another project involved a physician in the ICU in the St. Paul hospital who wanted to create a document for informed consent for invasive procedures in the ICU under emergent conditions. "The physician was precise in what he thought, but after conversations with two families, he realized the document was fine, but the issue of when to present it was off. They explained that being shown forms when they first come in and are in shock does not work. They wanted the procedure explained to them after the first hour, and if there is time, they still want the procedure explained to them," she says.

The youth advisory council works on issues that are more concerning to child patients but equally important — such as better food choices. For foreign speakers, some of the menu choices were downright strange: chicken fingers, for instance. They worked on changing the menu so that it was better understood for non-English speakers. They also got a grant last year to revamp the teen room and helped on room design.

Starting small

That the hospital CEO is supportive is helpful, Billman says. It has led to them adding patients and families to other committees, including quality and patient safety. "You need to have a door-opener first and foremost. But you also have to have training for the families." At Children's, families are trained on how to give feedback, how to frame negative experiences in a productive way, and active listening. They are all schooled in HIPAA and sign confidentiality agreements. That training helps other staff accept their presence and their input.

Billman also suggests starting small on non-confrontational issues. "That will promote positive word of mouth." When they first join a committee or partner with staff, allow time for family members or patients to tell their story. "You can't deny the family perspective, and you can't change perception," she says.

She also recommends trying to match families with skills to the places where those skills can be used. Someone with IT experience might be good helping to create an EMR; someone who is involved in law or even a clergy member can be good on an ethics committee. "These are free resources," Billman says.

Virginia Mason in Seattle has had patients involved since 2005, when they started by getting input from them for rapid process improvement projects, which takes a week per project, says Celeste Derheimer, RN, MBA administrative director of corporate quality and safety at the hospital.

Since then, they have expanded patient input to some of the standing committees. "The natural one was service leadership, a board subcommittee where we wanted patient and family feedback on the patient experience," Derheimer says. "More recently, we have included a patient on the quality assessment committee, which is a medical staff committee where there are conversations about care and where data is shared. This is confidential information, but I think because we have been doing that for a while, we had no pushback from the staff on that at all."

Another reason why there was easy acceptance stems from nearly a decade of emphasis putting the patient at the top of the patient/payer/provider triangle. "Our strategic plan in 2002 started that, and whenever someone gets into positioning or posturing or protecting the status quo, someone in the room always says, 'What about the patient perspective?' That really brings us back to why we are here," Derheimer says.

Getting hard data on the impact patients have on quality and safety is difficult, and it has not been the focus. But Derheimer says they always have patient members of the committee report during weekly meetings. They also keep watch on patient satisfaction scores, believing that improvements are due to their patient focus, part of which stems from patient input.

Take the next step

When you are ready to take the next step, consider doing a QI project on outpatient surgery, suggests Porto. You can talk to every patient there on a particular day. "You engage people who are getting care. One person on a committee who may or may not have had a good experience a long time ago will not give you the kind of feedback that a group of patients will. It is silly to talk about a project designed to improve patient care and not talk to them about it."

As an example, Porto recalls going to do a class at a hospital. She had to be there early and went to the front door, where a sign said that it was locked between certain hours and to proceed through the emergency department, which was on the other side of the building. "If I was a pregnant patient in labor, that would be a pain. No one asked how to improve security without impeding patients, nor did anyone make it known to the obstetricians to let their patients know that in off hours, they'd have to go through the ED."

She mentioned another example where a patient had arrived at 7 a.m. for a breast biopsy and sat for an hour in a paper robe clutching her husband's hand. The doctor? He was not due to arrive until 8 a.m. "What is convenient for the organization or the provider may not be what is best for patients."

Leonard says to think beyond specific projects. "Dana Farber has patients on every committee in the hospital," he says. "The voice of the patient is vital. Ask whether everything you do is centered around the patient or if you just give it lip service and it is really all about you. You can tell easily. If you make a suggestion and the physicians say it is inconvenient, that's the wrong answer."

Patient-centered care

And do not be afraid of including minor patients in your efforts, Leonard says. "Children do not have a filter and will tell you exactly what they see," he says. "Ask them how to make their experience better, how to make them feel safe and not so scared."

Porto says that it has taken the National Strategy for Quality for people to consider changing the way they think. "If you have to choose between the doctor and patient, choose the patient."

What's the point of having a mission statement that talks about being patient centered if you are unwilling to involve patients? asks Porto. "We aren't even on the dirt road of involving patients. Is that the best you can do? This is supposed to make sense to the end user, which is patients, not providers. You are supposed to make the end user happy, and that's patients, not providers. As long as you view physicians as your customers, not patients, you will not get anywhere near living your mission. That's why patients will be arriving at 7 a.m. and sitting in paper gowns until the doctor gets there at 8."

Billman says there is a great way to explain the rationale from the patient perspective to administrators or providers who are reluctant: "Nothing about me without me. Put them in the room."

Back at Dana Farber, where a patient is on every committee, one patient mentioned how every time she went for chemotherapy, she had to drive around looking for parking, past numerous empty spots designated for physicians. Leonard says: "She was driving in circles wanting to throw up and wondered why they couldn't be the ones driving around looking for a space." The hospital changed its parking as a result.

For more information on this topic, contact:

  • Michael Leonard, MD, principal, Pascal Metrics, Denver, CO. Email:
  • Tessa Billman, Family Coordinator, Children's Hospitals and Clinics of Minnesota. Minneapolis, MN. Telephone: (612) 813-7407.
  • Grena Porto, RN, MS, ARM, CPHRM, principle, GRS Healthcare Consulting. Wilmington, DE. Telephone: (612) 220-8500.
  • Celeste Derheimer, RN, MBA, administrative director, Corporate Quality and Safety, Virginia Mason. Seattle, WA. Telephone: (206) 223-6792.