When and How To Find a Patient Advocate

Unfortunately, almost everyone has had some kind of bad experience when dealing with medical facilities, be it long waits in emergency rooms or extortionate charges for services, supplies or medications. Complaints should be addressed via formal channels, starting with the facility’s own ombudsman or customer service department. Serious complaints should be send directly to the appropriate oversight body, which is generally run by the State government.

Dealing with health care insurers and providers, especially in the case of life threatening or chronic conditions, can be daunting, even for a well-educated person with time on their hands. The large health care companies, especially, are expert at stalling, deliberately ignoring or misinterpreting issues and putting customers into blind alleys and closed loops. Although every physician and nurse is supposed to be a patient advocate, the reality is that the accountants and administrators too often run the show, with the health insurer having the upper hand when it comes to expensive treatments.

Patient advocates liaise between patients and health care organizations to help ensure that patients receive high quality health care. The term is broad, covering: relatives and friends who may act on a patient’s behalf when they are ill or recovering; volunteer and non-profit groups ; government organizations; individuals or teams within a health care organization; and professional, independent individuals. We’ll cover the following groups in this article:

• Patient advocates within health care organizations: Often called ombudsmen, patient representatives or guest services.
• Government agencies: Ranging from State appointed Ombudsmen to the Health Care Financing Administration (HCFA), which oversees Medicare/Medicaid rule compliance.
• Patient advocacy groups: These are often set up to deal with a specific disease or condition.
• Professional patient advocates: These individuals will assist patients for a fee.

Do you need an advocate?
If you feel that you have a legitimate concern, question or complaint and your health insurer or health care provider isn’t giving you sufficient information or correcting the problem, then it’s time to turn to some form of patient advocate. You should find the organizations own description of what they consider to be patient rights. This may be hard to find, but Google will often find it for you faster than trying to comb through a complex web site. You can limit a Google search to a specific site by putting “site:domain_name” as the last term in the search, e.g.to look for references to “patient advocate” at the myinsurer.com site you’d search (without the quotes) for “patient advocate site:myinsurer.com”.

Read their description carefully. Have they done everything they promised? If not, you should contact their patient advocate and explain the issue to them. It’s in the company’s interest to deal with the issue themselves, rather than involve an external agency, particularly a regulatory one, or a lawyer (which would generally be your final recourse).

If you’re still not getting anywhere, or aren’t satisfied with the outcome, they may refer you to an independent arbitrator. If that happens, you should also seek help from one of the many organizations that can point you to patient advocate groups or professionals. Talk to one or two of them about the situation. They will almost certainly know a lot about the arbitrator(s) that the provider has recommended.

If you can’t find a suitable advocacy group or patient advocacy volunteer then it’s time to seek the services of a professional patient advocate. They generally work for a fee, but sometimes they’ll take a percentage of whatever they save you if you’re wrestling over a financial issue. Once you know what it’s going to cost you it’s time to decide whether or not it’s worth it. You may feel happier writing a few concise, sharp letters to local newspapers and TV stations, or posting warnings about the provider on every consumer complaint site that you can find on the Internet.

Patient advocates within health care organizations
Some health care organizations employ, or work with, an ombudsman or other form of patient advocate. These people may be nurses or physicians who fulfill the role on a part time basis, or they may be part of a broader service organization. Either way, if they aren’t entirely independent, there is always the risk of a conflict of interests between those of the patient and the employer. Nevertheless, it’s generally the place to start. The exception would be where you believe that there has been a gross dereliction of duty, which should be brought to the attention of regulatory authorities immediately.

If the patient has been seriously harmed, perhaps as the result of a gross mistake on the part of a hospital or doctor, you should consider going to a lawyer. However, you may be surprised to find that even the so-called “ambulance chasers” are reluctant to take on many kinds of cases. Unless there is a very clear mistake, such as operating on the wrong limb, it’s hard to get support from within the medical community. Doctors generally don’t like providing evidence against another doctor. They also tend not to like lawyers and legal procedures.

Government agencies
Most States employ ombudsmen, many of them dedicated to patient advocacy. It’s generally quite easy to find the appropriate regulatory authority, either starting from the provider’s web site or working down through the State government site. The Google search trick we described above will often get you there faster, but it might miss the most appropriate avenue if you’ve chosen a keyword that doesn’t correspond to what the government site uses. Their “Site Map” will often get you to the right area. Some States have online forms that you can complete and submit. Others require a letter, or a phone call to start the process. It’s always a good idea to follow up with a letter once you’re in contact with the right person. Don’t expect immediate results. Most government organizations seem to run on some kind of geological clock.

Patient advocacy groups
These non-profit groups often specialize in particular diseases, conditions or aspects of health care. They often take a very active role in the health care community as a whole, for instance:

• Sitting on investigative and advisory panels to ensure that ongoing projects and those being considered for funding will directly impact patients’ lives, improving delivery of care and support for tertiary care.
• Sitting on finance boards to analyze cost containment and act as a proponent for best practices, advocating better protection for both provider and patient.
• Lobbying for a health care system that is realistic for patients and practitioners, not merely beneficial to corporations.

At the individual patient level, they may offer a variety of services, such as: assistance with scheduling and quality review; care management; and bill negotiation, or mediation for the portions of bills that are the patient’s responsibility. They will quickly tell you if they can help, or, if not, will generally be able to point you to a complementary organization specializing in the issue that you want to address.

Professional patient advocates
A professional patient advocate can provide a range of services, such as:

• Providing medical literature research service to the patient, family, health care provider or research personnel.
• Assisting with family communication and issues arising from illness and injury. This may include further referral for care and support for both patients and families, which includes ongoing communication and coordination with all practitioners.
• Coordination of care for an individual patient, with initial oversight for potentially conflicting treatments and medications.
• Creation and maintenance of an electronic log for the patient which can quickly (but with privacy protections) be made available to practitioners.
• Assistance with insurance and household accounting management as well as any home health care and home maintenance issues that may arise for an ill or disabled person.
• Handling communications with an employer to negotiate a mutually beneficial solution for the employer and the ill or injured individual.
• Liaising with corporate oversight, government agencies or legal personnel to negotiate issues on behalf of the patient and family.

You should note that there are currently no mandatory training or certification programs for people calling themselves patient advocates, so it is important to check references, memberships in professional organizations, such as the Health Advocates Association. You should also check for complaints filed with the Better Business Bureau and similar organizations. If your own physician isn’t directly involved with the issue, they may be able to recommend a professional patient advocate that they’ve worked with before.

Resources
We’ve added a new “Patient Advocate” area to the Useful Sites page to help you find suitable help. We’ve also added some videos and podcasts to the Audio and Video page. Even if you don’t have a current issue to deal with (and we very much hope that’s true), you should take a look at some of them so that you understand the kinds of issue that can arise and how to deal with them. As always, knowledge is power. Finding people with the right knowledge gives you even more power.