Today’s complex healthcare system is increasingly fragmented. Patients seeing multiple specialists scramble to keep track of treatment plans. Confusing medical bills and insurance coverage pose challenges to even the most informed patients. Healthcare advocacy can play a vital role in easing the burden patients experience while navigating the healthcare system.
Managing health care can be challenging at the best of times. For older adults with cognitive impairment or for people battling symptoms of exhaustion, navigating one’s own health care can be daunting. The result? Patients put off getting the care they need or do not seek care at all.
Patients and their caregivers may spend a lot of time poring over insurance forms or other documents written in jargon they find difficult to follow. They can easily misunderstand diagnoses and treatment options. Such misunderstandings can result in the less effective use of medical services. For example, patients may undergo duplicate diagnostic tests, miss appointments, or take the wrong medication dosage.
Hard-to-interpret health insurance coverage sometimes results in patients not taking full advantage of what is available to them. Other times, patients mistakenly pay inaccurate medical bills containing errors or charges that were actually covered by their health insurance plans.
While the national conversation on health care has focused on ways to address these problems, many patients need individual guidance. Healthcare advocates can help.
Healthcare advocates give patients and their families direct, customized assistance in navigating the healthcare system. A healthcare advocate’s role entails:
- Helping patients access health care
- Educating patients so they can make well-informed healthcare decisions
- Guiding patients through their medical care, insurance questions, and administrative and legal tasks
How do patients and healthcare advocates connect? Sometimes patients and their families hire independent health advocates or individuals who work for advocacy organizations. Employers, insurance companies, and hospitals may also offer patients health advocates.
The healthcare system’s many layers have created a need for several types of healthcare advocacy. In fact, a Harvard Business Review analysis found that 52 percent of patients in the U.S. cannot navigate the healthcare system’s complexity without help.
Whether assisting patients concerned about an unclear diagnosis or clarifying confusing medical charges, health advocates offer a range of services:
Medical care navigation services include:
- Communicating with healthcare providers
- Setting, coordinating, and attending appointments
- Speaking up about patient rights
- Identifying health resources and making referrals
- Explaining confusing medical information
- Clarifying diagnoses and conditions
- Coordinating care between specialists
Services that help patients navigate medical billing can include:
- Reviewing medical bills for accuracy
- Negotiating bills with providers
- Getting billing errors adjusted
Assistance in navigating health insurance may include:
- Figuring out the coverage guaranteed by insurance plans, Medicare benefits, and veteran benefits
- Explaining copays and coinsurance to patients
- Investigating in-network and out-of-network provider options
- Advising patients on selecting health plans and insurance policies
- Researching additional potential benefits such as long-term care insurance
- Informing patients about wellness benefits such as preventive care and the use of telehealth
Services that help patients find placements include:
- Assisting patients getting admitted into or discharged from hospitals
- Coordinating patient transfers to nursing homes, assisted living, or rehabilitation centers
Navigation of older adult services includes assistance with:
- Home care
Legal navigation services include:
- Assisting patients with legal concerns and issues
- Advocating for patients who received poor care at a medical facility
- Helping patients with disability filings
Examining healthcare policy and patient support roles makes it easy to understand why advocacy is important in health care. Large-scale advocacy focuses on changing the system, while advocacy on an individual level endeavors to speak on the patient’s behalf.
Healthcare advocacy on a large scale guides lawmakers and leaders who form healthcare policy. It supports a well-informed decision-making process regarding programs that affect:
- Healthcare providers
- Healthcare environments
Broad healthcare advocacy encourages reforms that put the newest research into practice and cultivate better partnerships within the healthcare industry. It also strives to push for health policies that better account for factors such as poverty, as well as other social and economic circumstances that affect people’s health.
When successful, healthcare advocacy that influences public policy improves individual and community health, which reduces health disparities. Such advocacy guides health policy goals, gets priority legislation passed, and secures the funding needed to support the new policies enacted.
For example, healthcare public policy advocates jumped into action with the onset of COVID-19. They worked to educate policymakers on how to address care coordination, use telehealth, and manage privacy issues to best help patients and save lives.
In the past and present, health reform efforts have impacted medical research and education. In response to the AIDS crisis, for instance, advocacy group ACT UP played an instrumental role in getting AIDS research funded. That ultimately led to the development of anti-retroviral treatments available today that keep millions of people alive.
In an effort to dismantle systemic racism in health care, advocacy groups like White Coats for Black Lives are pushing for initiatives to diversify healthcare faculty. One project involves advocating for medical education training that combats discriminatory practices and implicit biases.
In addition to navigating the U.S. healthcare system’s ins and outs, patients often contend with the uncertainties that accompany illness. Very often information can be contradictory and unreliable, and frequently patients’ decision-making abilities are impaired.
The physical, emotional, and economic burdens of shouldering one’s healthcare responsibilities alone can prove impractical. For example:
- How can patients with dementia adequately arrange their own transition to a memory care unit?
- How can patients recovering from serious car accidents successfully coordinate their appointments for MRI scans with their visits to neurologists and orthopedic surgeons when they may be struggling to think clearly or be experiencing chronic pain?
While some patients have family members who can help, many do not. A trained healthcare advocate helps protect patients and ensures their needs are met.
Consider the following patient advocacy examples and the value they add to people’s lives.
Prior to the COVID-19 pandemic, a 75-year-old woman with a heart condition attended events at a local community center and had an active social life. Her activities and routines helped her keep up with her prescriptions. She remembered to go to the pharmacy when she went to choir practice; her afternoon visits with friends reminded her to take her evening meds. However, with the breakdown of her routines and growing isolation, she has started to lose control of her prescription management.
The patient advocate arranges a conference call with the client and her doctors. After confirming the client’s medications and dosages, the advocate researches local pharmacies and advises her client about their hours and delivery options. She arranges for her client to stock up on medicines that may take longer to refill due to the pandemic. From there, the advocate regularly checks in with her client, offering medication reminders and asking about any other needs.
A 35-year-old patient with cancer who has a history of long hospital stays does not want to return to the hospital, despite his worsening health. His family wants to honor his wish but feels ill-equipped to care for him at home.
After making a home visit and conducting a health assessment, the advocate arranges for a hospice care agency to visit the patient’s home for immediate intervention. Next, the advocate organizes 24-hour caregivers and helps the family manage his medication. In this way, the patient can live out his final days as he wishes, and his family has needed support so they can focus on saying goodbye to their loved one.
A month after a routine mammogram, a 40-year-old woman receives a call from the facility that took the scans. They tell her she needs additional exams but offer no clear answer as to why. She makes another appointment, but it is cancelled due to equipment malfunction. A week later she arrives for an additional mammogram. After her scans, she receives confusing information at the facility and leaves frustrated.
That evening the facility calls and informs her she has a cyst and should follow up in half a year’s time. An hour later the doctor calls informing her she needs another specialist to examine the cyst. The next day, another representative from the facility tells her she needs to see a surgeon.
At the client’s request, the advocate accompanies her to the next mammogram appointment. The advocate then researches specialists in her client’s insurance network and helps her schedule an appointment for a biopsy and a second opinion. Next, the advocate works with the client to coordinate a medical team and treatment plan.
A 20-year-old woman needs chemotherapy and does not have immediate plans to have a child. However, she wants to ensure she will be fertile in the future. Her doctors tell her the treatment may damage her eggs, make them infertile, or prompt premature menopause.
The patient advocate helps educate the client about potential treatment side effects. Then the advocate consults with the client, helping her form in-depth questions for the doctor. Next, the advocate investigates local fertility treatment centers and sets up an appointment for the client to learn about egg freezing and other options for conceiving a child in the future.
Healthcare advocates come from many backgrounds, including:
- Social work
- Hospital administration
- Patient care coordination
However, many advocates join the field after experiencing illness personally or helping an ill family member in need. Regardless of what initially attracts people to the field, healthcare advocates need the right education, training, and skills to thrive in their positions.
Patient advocacy encompasses many types of positions. Entry-level positions such as “experience ambassadors” who greet patients and serve as a liaison with healthcare providers may only need an associate’s or bachelor’s degree, alongside excellent communication skills, and a certification in patient advocacy.
However, positions that call for expert navigation of the healthcare system and the ability to aggressively advocate for patient rights require more education and training. Those interested in how to become a healthcare advocate should consider the following degree programs and certifications:
A Master of Health Administration degree offers graduates in-depth knowledge of the healthcare system’s internal workings. It also cultivates the type of problem-solving skills healthcare advocacy work demands, while teaching the legal aspects of health care as well as the payment systems. These degrees can also prepare people to advocate for healthcare policy.
An advocate who becomes a Board Certified Patient Advocate demonstrates to potential employers and clients that they are competent and professional. To earn the certification, candidates must hold at least a bachelor’s degree, submit letters of recommendation, and pass the BCPA exam.
Regardless of their focus area, all healthcare advocates should possess the following skills:
At the foundation of advocacy lies communication. Advocates must effectively communicate with patients and their families, healthcare providers, and insurance company representatives. They need to break down the complexities of the healthcare system, diagnoses, treatment plans, and insurance policies into simple terms for patients. They also need to speak persuasively and assertively when negotiating insurance claims on a patient’s behalf.
Emotionally charged situations may make it difficult for patients and their families to express themselves. As a result, patient advocates must pick up on body language and other nonverbal cues to get to the bottom of what patients are thinking and ask the right questions.
Advocates work with people who are often dealing with tough situations. Their clients may be confronting pain, crises, and confusion. Patient advocates need to listen and show empathy, as well as offer emotional support when appropriate.
Advocates must coordinate the many moving parts of each case they handle. This requires staying organized and managing their time well. It also involves paying close attention to details, so they can catch errors in medical bills and insurance claims, and keep track of their clients’ various conditions, medications, and doctors.
To address their clients’ needs, advocates often need to conduct research to get answers to questions, locate key information, and identify the right steps to take. Whether trying to help clients find medical coverage or dispute claim denials, patient advocates must think analytically and successfully gather the right information.
Some areas of advocacy call for specialized skills sets and knowledge. For example:
- Advocates specializing in eldercare should know about health conditions particular to older adults such as Alzheimer’s disease and dementia. They should also be well-versed in the different services older adults often need such as residential home care, nursing home care, and live-in home care.
- Advocates specializing in billing and insurance need solid math skills alongside in-depth knowledge of payer reimbursements, deductibles, and how to appeal insurance claim denials.
- Those interested in medical advocacy should possess an understanding of patient safety, know how to investigate clinical trial opportunities, and have care coordination skills.
While healthcare advocates may have areas of specialization, their cases often require them to work across the spectrum of advocacy services.
Facilitation sits at the heart of healthcare advocacy. Patient advocates do not make decisions for their clients, rather they make them aware of their options. They cultivate a better understanding of the healthcare system by giving their clients background knowledge. They offer the type of support that helps patients get their questions answered and their problems addressed.
Ultimately, healthcare advocates strive to handle health care’s logistical issues, so patients and their families can focus on health and healing.
All healthcare organizations’ members can advocate for patients. In fact, social workers’, nurses’, and case managers’ work duties involve patient advocacy. Nonetheless, the need for individuals exclusively focused on patient advocacy has become clear.
Healthcare advocates work in a variety of settings:
Hospital patient advocates work as ombudsmen — support people who help address complaints and concerns — and serve patients within hospitals and other healthcare facilities. Their duties include:
- Determining patient eligibility for government programs
- Investigating the possibilities for third-party reimbursement
- Helping patients with applications and other steps to secure medical coverage
- Managing patient care plans that address preventive, physical, and mental health
- Making referrals to additional healthcare providers including physical therapists, nutritionists, and nurses
- Addressing patient grievances and complaints through mediation
- Providing crisis intervention
Private case managers provide direct patient advocacy. They interact with patients, families, doctors, healthcare facilities, hospitals, and insurance companies. Private case managers either work independently or for advocacy organizations that assign them to client cases.
Private case managers assist:
- Patients newly diagnosed with a disease
- Patients with scheduled surgeries
- Patients facing radiation and other cancer treatments
Private case managers may also advocate for patients who cannot get a diagnosis for their condition or cannot locate the necessary treatment.
Government patient advocates work within state health systems. They access services from Medicaid and Medicare. They also handle some of the same case management support offered by direct case managers.
Healthcare advocacy can supply comfort, empowerment, and support to patients during challenging times. Given the complex nature of today’s healthcare system, patients deserve people with expertise in their corner. Cultivating the skills and knowledge needed to guide and advocate for patients effectively requires the right education.
Learn more about how an Online Master of Health Administration from Tulane University prepares graduates to help patients navigate the healthcare system and promote their rights.