​Over the past year, information and guidance relating to COVID-19 changed almost constantly as providers learned more about the virus, how to prevent it, and how to treat it. Add the rapidly evolving body of research and information to a plethora of misinformation, conspiracy theories, and misleading or sensational media reports, and it results in a perfect recipe for eroding public trust.

If the long term and post-acute care industry is to rebound after the pandemic, rebuilding trust must be part of the equation.

Pandemic Brings on ‘Infodemic’

While the world has struggled with a pandemic this past year, it also has faced what some call an “infodemic,” an overwhelming amount of information—some accurate, some not, and much of it conflicting—that makes it difficult for people to identify reliable sources and trust what they read, hear, or see. Social media, which is so popular among long term/post-acute care residents, families, and staff, is among the greatest super-spreaders of false and misleading information.

Last year alone, Facebook said it took down 7 million posts for spreading coronavirus misinformation, and it labeled millions more with warning notices. Nonetheless, this misinformation got out there, made the rounds, and contributed to confusion and mistrust before it was deleted or tagged.

According to a Cornell University study, 1.1 million articles identified as “covering, factchecking, or repeating misinformation represent a large volume of information that is likely to have significantly affected public perceptions of the pandemic.” (https://int.nyt.com/data/documenttools/evanega-et-al-coronavirus-misinformation-submitted-07-23-20-1/080839ac0c22bca8/full.pdf).

So how do leaders in long term/post-acute care (LT/PAC) go about repairing the damage and rebuilding public trust?

First and Foremost, Listen

Diane Sanders-Cepeda, DO, CMD“People get their information from so many sources. When someone comes to me with misinformation, I listen; and I say, these are the facts. This is what the literature is saying, and this is why it is reliable,” says Diane Sanders-Cepeda, DO, CMD, senior medical director at UGH/United Healthcare E&I Retiree Solutions.

“We need to build an environment where we are tuned in to what people—patients, families, and others—are thinking and saying. People are more likely to trust us when we establish relationships with them and show that we are listening to and respect their feelings and beliefs.”

Particularly when people are clinging to misinformation, listening is essential. It is the best way, Sanders-Cepeda says, to find out why they are hesitant to believe facts and scientific evidence. It may be related to an experience in their past, their trust in the source of the misinformation, or just a lack of understanding of or familiarity with accurate information.

“Once you understand the ‘why’ of their misperceptions, it’s easier to guide them to the truth while demonstrating respect and grace,” she says.

James Wright, MD, CMD, PhD, MATS, a multifacility medical director in Richmond, Va., stresses the importance of patience. “People can believe and say whatever they want, but science will catch up eventually. The public regains trust when the truth confronts them with a reality they can’t deny,” he says.

“We want people to adhere to scientific principles because statements of misinformation harm people. As individuals, we can’t always do much to regain public trust. However, reality will eventually accomplish that. I am confident of it.

The Power of ‘I Don’t Know’

Particularly early on, there were many questions and unknowns about COVID-19. That was especially challenging for LT/PAC leaders and practitioners who were often expected to have all the answers. “As a profession, we have been trained against using statements like ‘I don’t know.’ But we need to be able to say that when we don’t have the answers,” says Sanders-Cepeda.

“That is where we made one mistake during the pandemic that was very costly to the trust bank. We didn’t say ‘I don’t know’ as much as we should have, and it took months to re-educate people and explain how what we knew then was different than what we know now.”

Moving forward, she suggests, “We have to admit when we don’t have all the answers. When you lean into honesty, it’s okay to say if you don’t know something. It’s not a comfortable place, but you have to be there sometimes.”

This all goes back to transparency and sharing information openly, even when it’s uncomfortable. As James Harvey, vice president of marketing and communication at ALG Senior in Hickory, N.C., says, “You have to maintain transparency, warts and all. It will make you look better and help build and maintain trust. Be true to your word, and that goes a long way.”

Trust often leads to loyal relationships, he suggests, noting, “We have family members on social media commenting on posts, and we always respond. Sometimes when the community gets a negative comment, they jump to our defense. They know that we put residents first and do everything possible to keep their loved ones safe and happy.”

Admit to Mistakes, Champion Successes

It’s hard to admit to making mistakes, even when they are well-intentioned. However, in order to regain public trust, it is essential to own up to missteps and failures.

Sarah Silva, division president of community-based care for Avamere Living, says, “The reality is that we all made mistakes during the pandemic. You won’t find one provider that did everything right.” This isn’t for lack of effort or pursuit of excellence, she stresses. However, a decision made on one day from all the information available could be problematic the next day when more or different news or guidance came out.

However unintentional, errors caused problems. For instance, Silva recalls that her organization was switching to a new platform for family communication during the pandemic. Because it hadn’t included residents of independent living cottages, their families weren’t notified about the first COVID outbreak.

“They found out because we published it on our website. They were justifiably upset. We admitted the mistake, apologized, and assured them it wouldn’t happen again,” Silva says. “Owning up to mistakes can go a long way toward rebuilding trust.”

At the same time, it is important to remind the public about good that happened in communities during the pandemic. “With challenges come opportunities, and we have seen an incredible evolution in our industry with advances such as the growing use of telemedicine, automated communication systems, and hospital-like infection control,” says Silva.

“We’ve seen more advances in the past 14 to 15 months than we have in the past five years, and we should be proud of that and share those innovations.”

Jennifer Svoboda, director of standards and education at Avamere, says, “Our team did a great job of stepping into families’ shoes so that residents still had people who loved them and made sure that they had the best possible quality of life during a difficult time.”

Silva adds, “I’ve heard families recently say how much they appreciated us sending news, updates, and photos of things like their mom celebrating her birthday.” As a result of such efforts, families are more likely to trust the community, despite the negative portrayals they see on the news or in social media. See sidebar story, “Media Matters: Re-establishing Trust With Journalists.”

Tackling Trust Strategically

The isolation imposed on LT/PAC communities was devastating for residents and families who couldn’t visit, and this contributed to mistrust. Rebuilding trust will require communicating to the public how providers will prevent isolation and enable engagement if there is an outbreak or other issue in the future.

“The quarantines and lockdowns were a way for us to become creative,” Svoboda says. “We need to remind people about the innovative efforts we undertook to keep residents connected and involved during the pandemic.”

For instance, comparing a community-dwelling grandmother who was mostly alone for a year to one in assisted living who enjoyed contact with staff every day, meals and snacks delivered, and  hallway games and conversations with neighbors is a vivid reminder of “what we do and who we are,” Svoboda says.

Building trust has to be tackled on multiple fronts, says Sanders-Cepeda. Currently, she suggests, all organizations are looking at this on their own. While that’s important, there is a need to get together and look at barriers and challenges regarding trust across care settings and devise consistent trust-building strategies and messaging.

“From whatever care setting we are in, we need to ask ourselves the tough questions and look at what we’re doing right and what we could do differently or better.”

Living Up to the Social Contract

No doubt, lack of transparency—or a perception of it—contributed to a crisis in trust with facilities and physicians, suggests Wright. “There is a real tendency to always be cautious with potentially troublesome information. However, to families during the pandemic it often seemed like we just weren’t answering questions. We need to come to terms with being open and honest.”

He suggests, “Doctors have a social contract with America. In order to fulfill the terms of that contract, we have agreed to be truth tellers. Failing at that has resulted in lost trust.”

Everyone will have to agree to be transparent if they are going to rebuild trust as an industry, Silva agrees. “We need to be willing to be humble and give each other grace. We need to support each other, assume that we all did the best we could with the resources we had, that we made mistakes, but that we fixed them and that we always put our residents, their safety and well-being, first.”

Joanne Kaldy is a freelance writer and communications consultant based in Harrisburg, Pa.