Who is the Patient Advocate?
How Providers Can Work More Effectively With Growing Ranks of Private Patient Advocates
By Megan Headley
If you think medical school is challenging, try navigating the labyrinth of medical challenges that chronic patients face. Sorting out payment, deciding among specialists, understanding differing second opinions, and more—all of this can be major challenges to patients already overwhelmed by a diagnosis. Compound those issues by adding in age and conditions such as dementia, which add to the cloud of confusion around care complexities. Physicians see the effects when confused patients stop taking medications or overwhelmed individuals don’t schedule necessary follow-up exams, leading to a deterioration in condition or higher use of emergency services.
A fast-growing solution is the rise of private patient advocates. The Institute for Healthcare Improvement defines a patient advocate as a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” This can be a family member or close friend, but it’s increasingly an independent professional specialized in helping individuals make sense of their and their family’s healthcare options.
In fact, the Patient Advocacy Certification Board’s multi-year effort to develop board certification paid off in March 2018 when it held its first test, certifying approximately 150 patient advocates.
“The patient advocacy movement is growing,” says Debby Deutsch, founder and principal advocate of Patient Care Partners LLC, and among the first round of Board Certified Patient Advocates (BCPS). As Deutsch adds, “There is such a need for this.”
Empower patients report higher satisfaction with care teams
Private patient advocates are first and foremost serving your patients, but they see themselves as partners in the healthcare team. They share clinicians’ goals of doing what’s right for the patient, but they have the time and holistic view of an individual’s health that is available to too few physicians today.
“The biggest benefit is enhanced patient-provider communication, which also enhances patient safety and clinical outcomes,” explains Jessica Tulloss, MPH, RN, CPPS, CLNC, owner and Patient Advocate for TrueCourse Healthcare Consulting LLC in Roswell, Ga.
“I see that offering this type of individualized support has a way of helping the efficiency of the healthcare system,” Deutsch says. “And, it increases my client’s levels of satisfaction with their healthcare.”
When patient advocates help their clients work through healthcare challenges, they find patients become more engaged in their own healthcare and more satisfied with their healthcare team. And they’re typically more compliant with medication and follow-up appointments.
Take, for an example, a client with which Kim Mcilnay, formerly a physician and now owner Together Patient Advocates in Sacramento, Calif., worked. “The client was supposed to start a medication that he would take once a week and then a supplement that he needed to take daily to help the medication. When we finished the appointment and I asked the client to share back what he understood, he understood he was supposed to take the medication every day.”
“Advocates can also help to ensure patients understand the plan of care, follow through on the plan of care, and ask questions if needed,” Tulloss elaborates. “This is especially important after appointments and discharges. Depending on the situation, the client may not be in a state of mind to process all the information that’s been given to them, let alone think of the right questions to ask. While nurses and doctors can provide instructions and orders, if a patient does not follow through because they missed something or misunderstood, it can affect the desired outcome, to the point of even an adverse outcome.”
Creating a full healthcare picture
A private patient advocate can also be a valuable ally in organizing information to present a full picture to physicians.
“Providers depend on the patient’s ability to provide complete and accurate information regarding their medications and health history. Some patients see multiple providers over the course of several years. Private advocates can be instrumental in assisting clients to gather and organize key information and have it readily available for providers,” Tulloss says.
During her time as a resident, Mcilnay recalls, she began asking a patient with multiple issues to write problems out prior to her appointment. “Her number one issue was her toenail fungus and her 20th issue was her chest pain,” Mcilnay found. “By having that written in a list, we could each pick our most important issues and she picked the toenail fungus and I picked chest pain. We would have never gotten to chest pain if she had been going down her list in order.”
More challenging yet are patients who can’t speak to their own challenges, such as those suffering from dementia.
“A lot of times patients get confused by the questions,” Mcilnay says. “So I’ve got that whole picture in my mind. For example, I went to an appointment with a patient and the neurologist asked if he was having any difficulty with urinary incontinence. The patient’s response was no because it wasn’t a problem for him: he wears diapers and it was okay. Yet the disease that the clinician was looking for causes dementia and urinary incontinence. This client was having some cognitive difficulties, so the clinician wouldn’t have known to look further for that condition without knowing that he was actually having the incontinence.”
In each of these instances, patient advocates become a channel for improving communication. And as Teri Dreher, RN, CCRN and iRNPA, owner and founder of NShore Patient Advocates in Chicago, points out, “Really, medical error is due in large part to miscommunication.”
What you can expect from a private patient advocate
Many patient advocates come from backgrounds as RNs, physicians and other roles within the medical community. They’re well aware of your time constraints and work hard to balance patient needs with the limitations physicians face.
“I coach my clients on the fact that the practitioners we’re going to see are ordered by the system to move patients through,” Deutsch says. “I brace them for the fact that the national standard is 8 to -15 minutes for a patient visit. We have to prepare for the fact that we’re likely only going to be seen for 10-15 minutes and, oh by the way, while we’re there the physician will be documenting and on the computer, there’s a lot going on during that time. So I make sure we’re very well organized, we’ve got the questions all mapped out, and I’ve got the patient prepped.”
Tulloss prefers to prepare practitioners to work with a patient advocate before she arrives on-site.
“To avoid potential challenges, I always recommend clients inform their providers early on of their intent to work with a private advocate,” she says. “I also make sure that if I’m attending appointments or hospital visits, either myself or the client informs the healthcare team beforehand. HIPPA forms are submitted in advance and I keep a copy on hand. This helps to ensure there are no surprises.”
Mcilnay explains that she works closely with clients before an appointment to outline and prepare any questions they might have as well as a high-level view of the client’s issues. “I usually do a summary sheet before the appointment that lists our issues, and if it’s a client with multiple issues usually there’s an acknowledgement that we realize there may not be time to address all of these different problems,” she says.
For patients with complex medical needs, Mcilnay may give a copy of the summary to the medical system to give the clinician so that they have a chance to look at it while the patient is being checked in. “My goal there is that they can scan over it and make sure there aren’t issues that they feel are higher priority,” she says.
During the appointment, Deutsch finds that the simple act of notetaking can add a level of accountability that slows down the process. “I take notes the whole time, making sure the questions are answered and understood,” she explains.
While patient advocates work to ensure their patients feel understood, many are also able to fall back on their professional background to better address physicians’ first concerns.
“I was a critical care nurse. I know what doctors want to hear first, second and third. Patients want to go into a story and physicians stop listening,” points out Barbara Abruzzo, founder and president of Livingwell Health Advisory in New York.
“If there’s a patient advocate on board, [physicians] can communicate much more efficiently with a colleague rather than listening to a family member talk for 45 minutes,” Dreher agrees. “We can come in, hand you a two-page professionally prepared medical profile or care plan that says who this patient is, what happened today, what we’re concerned about, etc.” Dreher explains. “If you have a professional that knows how doctors think and knows what information they need, you just cut down on the amount of time that they have to spend and then they can quickly, accurately diagnose the patient to get them treated instead of standing around scratching their heads because the patient’s too sick to give an accurate history.”
Your relationship with the patient advocate
Given the newness of the patient advocate accreditation program, it’s easy to appreciate why many professionals in the field are relatively new to their role—and why many physicians might have confusion about what this role entails.
“Once they understand we’re not there for any legal reasons, they really calm down,” Dreher finds. “We don’t really get involved with any kind of legal things. Rarely will we see something that just isn’t quite right in the hospital, and then we’ll go straight to the hospital management department or a supervisor and try to sort it out so it doesn’t lead to something worse. We actually help prevent medical error and lawsuits.”
If you haven’t worked with a private patient advocate yet, it’s becoming more likely you’ll see one in the future. The Patient Advocacy Certification Board held its second test in September, with double the number of individuals sitting for the certification. And as physicians begin working with patient advocates, many are encouraging other patients to seek out these problem solvers.
“I have had clinicians ask if they can refer clients to me,” Mcilnay says. “They’re definitely seeing a benefit to my clients in having me there.”
About the Author
Megan Headley is a freelance writer and owner of ClearStory Publications. She has covered healthcare safety and operations for numerous publications. Megan can be reached at firstname.lastname@example.org.