What is a professional patient advocate, and why might you need one?

Jennifer Schlinger, University of North Dakota

Imagine your mom has just been discharged from the hospital to a rehabilitation center after hip replacement surgery. She has the paperwork, the facility’s address – and a long list of questions. Will her insurance cover her entire rehab stay? Does she have enough pain medication until she gets settled? Will the hospital transfer her prescriptions? Are they accurate?

Scenarios like this are exactly what patient advocates are trained to help with. They understand patients’ and families’ concerns, ensure their voices are heard by medical staff and interface with care teams, insurance companies and facility administrators. They also coordinate care, set up follow-up appointments and address potential gaps or blind spots in care.

I train social workers – who often serve as patient advocates – to help people in a variety of settings, including hospitals and nursing homes. Earlier in my career, I served as a professional patient advocate supporting people in hospitals, home health and hospice.

A trained patient advocate can provide much-needed support for people on their healthcare journey. Here’s what you need to know to work with one most effectively.

The evolving field of patient advocacy

Patient advocacy emerged out of the Civil Rights Movement’s focus on individual protections and rights. In 1966, healthcare advocacy pioneer Ruth Ravich founded the Department of Patient Representation at Mount Sinai Hospital in New York – widely considered the beginning of the patient advocate role.

Historically, doctors made decisions for patients without fully involving them in their own care. But during the 1960s and in subsequent decades, a growing patient rights movement embraced the importance of informed consent for honoring patients’ autonomy. Patient advocates arose as an important voice in this movement by educating patients about their rights and helping them participate more fully in decisions about their healthcare.

For decades, “patient advocate” was a self-described title, not a standardized role. As the healthcare system became increasingly complicated, the need emerged for national standards on skills, ethics and best practices. In 2018, the Patient Advocate Certification Board established basic requirements for patient advocates and created a professional certification, which is the only one available for this role in the U.S.

Certification is not required to be a patient advocate, but it indicates that a person has received specific training for the role. To become certified, patient advocates must pass an exam demonstrating a knowledge of health and medical concepts, issues relating to paying for care, an understanding of the healthcare system, how to work collaboratively with patients and other areas of competency. They must complete continuing education to maintain certification.

Some healthcare professionals who serve as patient advocates are not certified and instead have learned relevant skills through their education or professional experiences. They may work in rural healthcare facilities, for instance, where they wear multiple hats as nurses or social workers who are also advocates.

What does a professional patient advocate do?

Patient advocates are trained to support, inform and guide patients through the healthcare system. They help explain medical information, such as a medication’s side effects or treatment options. They also make sure patients’ questions are answered and their concerns are addressed.

When a patient receives a referral to a specialist, a patient advocate can connect care across various healthcare providers, making sure details about the patient’s condition or care priorities don’t fall through the cracks and helping to arrange transportation to appointments.

Early in my career, for instance, I worked at a hospital with patients who were being discharged to their home or to a long-term care facility. I started by understanding each patient’s goals, assessing their living arrangements and the type of care they needed and identifying any concerns they had about their discharge plan. Before they left the hospital, I coordinated community supports or additional care they might need, such as home-delivered meals, home healthcare, and physical, occupational or speech therapy.

Patients often have family members who are advocating on their behalf – and family support is invaluable. Working with a patient advocate can provide something different: a grounded, objective perspective, expert knowledge of the healthcare system and knowledge of resources that patients and family members may not be aware of.

Indeed, patient advocates interact closely with family members and friends who are involved in the patient’s care. As liaisons between the patient, family and healthcare providers, their job is to keep the patient’s needs, preferences, goals and values at the center of their care.

Working with a patient advocate can help patients feel more confident in making informed decisions. According to a 2023 survey by a nonprofit alliance called the Coalition of Healthcare Advocacy, 92% of patients and healthcare providers reported that working with a patient advocate positively affected patients’ care.

Understanding bills and insurance coverage

Managing financial aspects of healthcare can be overwhelming for patients and family members, particularly in the midst of a health crisis. Medical bills are often impenetrable documents littered with complex codes and terminology, and sorting through charges and details about insurance coverage can feel intimidating, if not downright paralyzing.

A patient advocate can provide a knowledgeable outside perspective on these issues that’s not clouded by the urgency and emotional weight of illness.

Some patient advocates have specialized knowledge in medical billing, coding, insurance and other financial matters. They can answer questions about medical terms or clarify charges on a patient’s bill, review the bill for errors such as incorrect or duplicate charges and assist with figuring out insurance coverage and reimbursement.

If necessary, they can also appeal claims by acting as a liaison between the patient, the healthcare facility and the insurance company. Patient advocates can also help patients work with a hospital to set up a payment plan, explore additional financial support or coordinate access to community resources.

If a finance-related question falls outside an advocate’s knowledge or expertise, they can help the patient identify the right people to talk to.

Finding and working with a patient advocate

Finding a patient advocate is not always as straightforward as it should be.

If you are unsure where to start, ask to speak with a hospital social worker or case manager. In some cases, an advocate’s services are provided by the healthcare organization or are covered by insurance, but in others, the patient or family must pay for them out-of-pocket.

Many healthcare facilities, including Veterans Affairs, have patient advocates on staff. You can contact your local hospital or clinic and ask to be connected to their patient advocate. Alternatively, you can search for a patient advocate in your area through the Centers for Medicare and Medicaid Services website or the National Association of Healthcare Advocacy.

If a certified patient advocate is not available within your healthcare facility, request to speak with a social worker. Social workers have the education and expertise to support patients and families, to connect them with resources and to advocate for patients’ needs.

Before meeting with a patient advocate, identify your main objectives – for example, preparing for a transition home, clarifying a treatment plan or understanding medication changes. Then, write down your main concerns and questions. The Care Partner Project offers checklists for questions to ask healthcare providers, prepare for doctor visits, evaluate senior living communities and more. Gather any relevant information, such as medication lists, medical records, insurance documents and medical bills.

When you meet a patient advocate you’re considering working with, you can feel out whether they are a good fit by asking about their professional background, areas of expertise, experience and credentials. Some questions you might start with include:

• What is your experience with cases like mine? (For example, patients being transferred to a rehabilitation center, if that is your situation.)
• Can you provide an example of how you helped a patient or family work though a difficult healthcare situation?
• How do you typically communicate with patients and families, and how often can I expect to hear from you?
• How do you help patients speak up about their concerns and preferences to their healthcare providers?

Finding a healthcare advocate you trust can make navigating a complex health situation much less overwhelming.

Jennifer Schlinger, Clinical Associate Professor of Social Work, University of North Dakota

This article is republished from The Conversation under a Creative Commons license. Read the original article.