A strong quality improvement infrastructure can be the perfect setting for developing a patient and family advisory council (PFAC), says Libby Hoy, founder and CEO of Patient and Family Centered Care Partners in Long Beach, CA, which works with hospitals to encourage patient and family participation.

“Some organizations have a very strong QI [quality improvement] infrastructure and that can be the most appropriate way to engage patients and family, by welcoming them into that structure,” Hoy says. “The goal is to create consistent messaging and to create some guardrails around the effort, so that everyone comes in with consistent messaging and common goals.”

Recruitment is especially important for PFAC because the members should accurately reflect the population served by the organization, Hoy says. She has served on a hospital’s PFAC herself.

“It’s a top area for opportunity in this work. Most councils are not hitting that diversity profile yet, and that is an important thing to strive for if you are developing a council,” she says.

A common recruiting mistake is to ask leading physicians to recommend someone who would be a good patient or family volunteer, Hoy notes.

That is an easy way to recruit and can yield a good number of participants, she says, but it does not always yield the best results.

“After a honeymoon period of three to four months, we find that a lot of advisors who came to the council that way fall off. That is because if a physician is treating my family and comes to me asking me to be part of this council, what am I going to say?” Hoy asks. “I’m going to say ‘yes’ because he’s treating my family and I want to maintain a good relationship. But three months down the line when I’m not seeing that doctor so regularly anymore, I’m going to find a way out because I didn’t have any intrinsic commitment to the idea.”

Staff members may be reluctant to suggest potential advisors because they worry about being held responsible if the volunteer does not work out, Hoy says. The best approach is to allow patient and family members to self-select but to manage the council membership so it has the right diversity, she says.

Train Volunteers Properly

Training and educating PFAC members also is a key concern, Hoy says. Failing to provide proper orientation is a common pitfall and undermines the overall effectiveness of the council, she says. It can lead to volunteers becoming frustrated or losing interest, and staff members can be skeptical of the volunteers’ motives or lose patience with them not knowing the hospital’s basic functions, she explains.

“The orientation to the advisor role is a key piece that I see get dropped pretty often. People are brought in, and they stay in that mindset of being a previous patient or family member, rather than joining the hospital and being part of that team,” Hoy says.

“If we can move people from their roles as patient and family members into the advisor role, we can get them to see themselves differently in terms of what they can do. That’s when we get what we call high-impact advisors.”

Integrating the volunteers into the quality improvement structure can address many of those potential pitfalls and help draw out the most meaningful information, Hoy says.

Too often, she says, hospitals use a customer service approach and ask patients and families questions like “What do you think of this?” and “How could we do better?”

“That opens up a whole dialogue that may or may not be relevant to the organization. We find it’s much better to put that into the QI context and tell them you’re working on improving admissions, specifically these parts of the process, so what do they see that maybe you’re not seeing?” Hoy explains.

“Narrow the conversation so that you can get the most useful information and not have them feeling like they’re being asked to think of a lot of different things that may be unrelated.”

Educate About QI

Many patients and family members will not be familiar with the concept of quality improvement within a healthcare organization or that a specific department exists. Hospitals establishing a PFAC should include education about how quality improvement works within the organization and introduce quality leaders.

Hoy became involved with a PFAC after her son was treated in a hospital, and at that point she had never heard of a quality improvement department.

“I just knew my son’s physician and care providers. The idea that there was an entire department dedicated to improving quality at the hospital, and that there were people who made this their profession, that was a new idea to me,” she says.

The potential benefit from a PFAC is significant, Hoy says. PFAC members can provide a perspective that is unique to the organization, making their input useful in ways that more generalized advice cannot match, she says.

Hoy notes an example in which she was working with a hospital’s PFAC, as a family member, to address the facility’s ED outpatient clinic wait times. She did not know what to expect from the experience, especially what the eventual outcome might be.

“That’s also key for PFAC participants: getting comfortable with the idea of not knowing the outcome. Quality improvement people are probably more comfortable with that, having used the PDSA and continually improving,” Hoy says. “Being comfortable with not knowing the outcomes means you’re getting the highest level of value out of your advisors because you have not predetermined the outcome. You have left room for that patient and family voice to inform and guide you.”

She had another experience in which a physician was meeting with the PFAC and expressed frustration with parents who do not follow up with appointments and test results. Hoy told the physician that, as a parent, she also was frustrated with the difficulty of reaching someone to discuss those issues. She was frequently sent to voicemail and had other difficulties communicating with the physicians.

“We had a discussion with the administrative team and the front office staff, and together we were able to identify that the phone tree was set up so that when parents called in they were being routed to message boxes of staff members who weren’t with the clinic anymore,” Hoy says. “We looked in one message box and there were a hundred messages in there from patients and family. I think that highlights the partnership, because you can’t get to that without every perspective in the room joining the conversation.”

The use of PFACs has increased exponentially in the past several years, Hoy says. Hospitals and other healthcare organizations are embracing the idea as a useful quality improvement tool, she says, with about 54% already using patient and family advisors in some capacity.

“The idea of having advisors is taking hold in the healthcare community, but it’s spreading now beyond the idea of having one council for your hospital or health system,” Hoy says. “We’re seeing councils developed for research, measurement development teams, and quality improvement organizations themselves. That is continuing to spread.”

Hoy recently met with a major health plan that is developing a PFAC to help design benefit packages.

Watch for Pitfalls

There are potential pitfalls when establishing a PFAC, Hoy notes. To get the most value from a council, the hospital should take it on as a serious endeavor and not merely a casual nod to listening more to patients and family. An organization can start slowly, but still, a council is more than just having a few volunteers in for lunch a few times a year and asking them for suggestions, she says.

“There is a risk of not being intentional enough up front, not understanding for the organization what the specific value is to them and how to best implement this plan, which often means working through your quality improvement framework,” Hoy says. “It can start as a small test of change and develop organically from there, rather than jumping in all at once with a full council. But some organizations are ready to move forward in a deliberate way. The important thing is to know what you want from this effort and being intentional about that from the start.”

When you do not establish the council with that mindset, it can become only a reactive resource. The council might provide feedback, but that information is provided to the organization without structure, Hoy says. The recipients do not know what to do with it or how it fits into the hospital’s quality improvement efforts. “That’s when things get really loose, and the value just diminishes,” Hoy says.

Another pitfall is not closing the communication loop. It is discouraging for council members to discuss an issue or policy and see no evidence that their input was valued or led to any changes, she says. Volunteers do not expect the hospital to accept and act on all of their suggestions, Hoy says, but they do need to hear that the information was received and considered.

“It’s very important for organizations to close that loop by telling them that their information went to the appropriate committee, and for this reason and that reason, the committee decided not to alter the policy, or the decision is on hold for another six months,” she says. “Whatever the explanation it is, it’s important to pass that on to the advisors so they don’t lose momentum.”

Hoy’s center offers online resources at: https://bit.ly/2v69W1m.