By Alexandra Wilson Pecci
Patient advocates—individuals who guide patients through healthcare experiences, including care goals and financial responsibilities—are increasingly becoming part of patient care teams.
That includes on-staff patient counselors inside hospitals, as well as independent patient advocates, a relatively new profession that’s seen major growth as demand for advocates has increased over the past decade, says Trisha Torrey, founder and executive director of the Alliance of Professional Health Advocates (APHA), a membership support organization for independent patient and health advocates in the United States and Canada.
She says APHA has grown from 30 members when it was founded in 2009 to more than 600 today.
But what is the incentive for hospitals and health systems to work with these additional team members in healthcare?
Working with patient advocates could be a critical component to ensuring your patients’ medical and financial engagement at your organization.
How advocacy works
Advocacy work can be divided into two broad categories: patient advocacy, which helps patients navigate health-related issues; and financial advocacy, which helps patients deal with billing, insurance, and other money matters.
Some advocates are unpaid family members or friends who accompany the patient to medical appointments, while some work for a hospital or health system as part of the patient experience or ombudsman departments.
Advocates who work for hospitals and health systems help patients navigate the care they receive within that system, as well as any associated financial responsibilities. They do so for all patients, free of charge, as part of their in-hospital services.
Stephanie Bayer, JD, senior director of patient experience at the Cleveland Clinic, says, “Though it is required to have processes for patients to raise concerns without reprisal, it is not reimbursed.”
Still others work for nonprofit advocacy organizations, like the Patient Advocate Foundation, which is funded through grants and donations. PAF services cost nothing to patients, says Christine Wilson, vice president for advocacy communications for the National Patient Advocate Foundation, the advocacy affiliate of the PAF, which is a nonprofit that helps patients with chronic, life-threatening, and debilitating diseases to access care.
Patients can also hire advocates who are independent professionals. These independently hired advocates work for the patient, and patients pay for the advocate’s services out of their own pocket.
Because the independent advocate profession is so new, there aren’t currently any educational or certification requirements, says Torrey.
“You could hang out your shingle tomorrow and say you are a patient advocate,” she says.
However, that is changing. In May 2018, the nonprofit Patient Advocate Certification Board certified its first cohort of board-certified patient advocates who passed a national exam. The Patient Advocate Certification Board certified 337 patient advocates in its first two exam cohorts.
In addition, APHA runs the online AdvoConnection Directory, which helps patients find an advocate based on their needs and location. Torrey says about half of APHA’s members are included in the directory, and in order to be listed, advocates must meet certain criteria, such as having liability insurance, certification, or a background check.
Despite the profession’s growth, not all patients can afford to hire a team of people to guide them through their healthcare journey. Independent advocates’ rates range from a low end of $75–$100 per hour, to a high end of more than $400 an hour, says Torrey.
Such costs may be prohibitively expensive for some of the neediest patients.
Bayer agrees that the people with the greatest need for an advocate are often those who can afford it the least.
“I think when it comes to clarification around care and getting your concerns addressed, it tends to be the people that have lower levels of medical literacy [with the greatest need], which also tend to be people who don’t have a lot of resources,” she says.
That’s why it’s important for hospitals and health systems to not only welcome independent advocates and those from nonprofit organizations, but also offer these services themselves.
“I think any advocate is important, whether it’s the hospital side or independent,” says Bayer. “I think they’re always needed, especially when people don’t have the healthcare background to understand this complex [healthcare] language.”
Torrey says in the early days of independent patient advocacy about a decade ago, most clinicians “wanted little to nothing to do with us.” The perception was that advocates would be tattletales, reporting every nurse call button that took too long to answer, or be an annoying extra person in the exam room.
But that perception has changed, says Torrey.
Bayer adds that hospitals should welcome advocates the same way they welcome family members.
“I think anyone who can help clarify goals of care and clarify expectations would be welcome to the conversation,” Bayer says. “Hospitals want our patients to have good experiences in addition to strong and quality care.”
For instance, advocates can make sure patients understand and follow discharge instructions, potentially reducing complications and readmissions. Torrey says there isn’t research specifically linking patient advocates to better outcomes, but data suggests that engaged patients have lower adverse events.
For instance, research published December 2018 in The BMJ finds that a program including parents as active participants in pediatric unit rounds at eight hospitals reduced preventable adverse events by 38%.
Bayer says that Cleveland Clinic is currently exploring quantifying the success of their ombudsman office, which serves as the role of a patient liaison, but doesn’t have data it can share yet.
Having an advocate on hand who keeps patients engaged in their care—who understands and ensures compliance with discharge instructions, for instance—can only help patients when it comes to improving their outcomes and possibly avoiding readmissions, says Torrey.
“To have someone that’s keeping that person from being readmitted with no cost to the hospital?” Torrey says. “That’s enormous.”
Similarly, financial advocates can handle medical bills when the patient is not equipped to do so.
“If somebody is overwhelmed by their bills, they tend to set them aside. They don’t deal with them, especially if they’re sick,” Torrey says. “They can’t process them.”
Once a financial advocate steps in, though, the hospital can work with the advocate to set up patient payments.
“It may be the only way [healthcare organizations are] going to get paid,” Torrey says. “Much better to deal with a financial advocate who can make sure you get a check than to just watch somebody go bankrupt and you never get paid at all.”
Wilson agrees, saying the PAF doesn’t have adversarial relationships with hospitals or insurers; rather, they have productive partnerships and good relationships with everyone they work with, resulting in positive outcomes for all parties.
“Instead of a patient who’s got a pile of bills that they won’t even open, you’ve got somebody who’s helping them understand what those bills are, how to pay for them, [and] working with the hospital and provider,” she says.