Patient Rights and Advocacy in Healthcare
Whether you realize it or not, you have rights when you’re accessing health care. In fact, there are federal and state laws enforcing these rights to protect you. That’s why it’s important to know your rights to keep yourself informed. This can help you make the best decisions regarding your care.
Your rights aren’t just limited to the care you receive at a hospital or medical office. You also have rights over your health information, insurance coverage, and more.
Find examples of your rights:
American Hospital Association (AHA). Lists 15 rights you have as a patient when receiving care at a hospital.
National Institutes of Health (NIH). Lists 12 rights you have as a volunteer when participating in clinical trials.
The Affordable Care Act (ACA). The ACA’s Patient Bill of Rights applies new protections to nearly all health insurance plans.
Health Insurance Portability and Accountability Act (HIPAA). The Privacy Rule under HIPAA gives you rights over your health information.
Part of understanding your rights as a patient is knowing common terminology. You may encounter terms like, “informed consent” and “continuity of care.” But what do these words actually mean? And how do they affect you?
For example, informed consent is one of your fundamental rights as a patient. And it isn’t just about agreeing to a medical intervention. Informed consent means that you have the right to know the benefits, risks, and alternatives to a procedure or treatment.
Understanding these terms enables you to apply them when asking questions and gathering information to make informed decisions.
The U.S. healthcare system is complex. And for many people, it can be difficult to navigate. Luckily, there are trained professionals — called patient advocates — who can help. They can ask questions, help you understand your care, and resolve problems if you believe your rights are being violated.
Some patient advocates work for the organization that’s providing services to you, like a hospital or senior living facility. They’re usually involved in the complaints and grievances process. Some patient advocates may volunteer for nonprofit organizations. Others offer their services independently for a fee.
You may not need a patient advocate, especially if you feel comfortable advocating for yourself. But should you find your healthcare journey becoming more difficult, you may want some extra support. With an advocate, you don’t need to navigate the healthcare system alone.
Under HIPAA, you have a right to access your medical records. This includes records such as lab test results, medical imaging results (e.g., X-rays), and clinical case notes. You also have the right to request changes to your records, especially if you believe the information is incorrect.
How long your records are kept can depend on your state and the facility type (e.g., hospital, medical office). And there are some exceptions to what information you can request. For example, information that’ll be used in a court case may be considered off-limits.
If you want to access your medical records, you’ll need to submit a request to your healthcare provider. You can request electronic or paper copies of your records. They should be provided to you within 30 calendar days, but usually no later than 60 calendar days.
When making healthcare decisions, it’s important that you have all the information you need to make an informed choice. Part of that process may involve a second opinion.
A second opinion is when you see a different healthcare provider after receiving a diagnosis and/or treatment recommendations from your regular provider. The second provider’s medical opinion may be the same — or different — from your regular provider.
Although a second opinion isn’t always necessary, there are certain situations where it might be a good idea. For example, you may want to learn more about other treatment options not offered by your regular provider. Or you might have a rare or unusual diagnosis and want another provider to weigh in. No matter the reason, you’re able to pursue a second opinion.
Advocating for yourself isn’t always easy. But the more you do it, the better you’ll get at it. You might start with smaller steps, like understanding your rights so you can start applying them to your care.
You may not be completely comfortable speaking up right away. But you can always bring someone along, like a friend or family member, who can speak up for you.
Being prepared can also help. Write down questions or concerns as they come up so you don’t forget anything. Make sure that all of them are being addressed — either during your appointment or afterwards over the phone or patient portal.
Advocating for yourself isn’t always easy. But the more you do it, the better you’ll get at it. You might start with smaller steps, like understanding your rights so you can start applying them to your care.
You may not be completely comfortable speaking up right away. But you can always bring someone along, like a friend or family member, who can speak up for you.
Being prepared can also help. Write down questions or concerns as they come up so you don’t forget anything. Make sure that all of them are being addressed — either during your appointment or afterwards over the phone or patient portal.
Institutional Review Boards (IRBs) are in place to review clinical trial procedures. Their job is to ensure that participants are protected.
They also review informed consent documentation provided to potential volunteers. This information helps you understand the potential benefits and risks, treatments or procedures, and other information you should know before agreeing to participate.
Remember: Your participation is voluntary. You can decide to leave a clinical trial at any time.
Under HIPAA, your personal representative has the ability to access your medical records. But this doesn’t mean that a family member is automatically considered your personal representative. It depends if they have the authority — under state or other applicable law — to act on your behalf.
But even if a family member isn’t your personal representative, you can still allow them access to your records. And if they request access, the information may be shared if you don’t object to their request.
Some patient advocates have different areas of expertise. So, it’s important to find one that’s the best fit for what you need.
For example, the National Association of Healthcare Advocacy and AdvoConnection have searchable directories of patient advocates. Filter your search by location and area of expertise or services offered. These services may cost an hourly or flat fee.
But if you have a chronic condition, you may qualify for free one-on-one support through the Patient Advocate Foundation.
How much it costs to get a second opinion depends on your health plan. In some cases, you may need to get a referral from your primary healthcare provider. And you may need to see an in-network provider if you want your second opinion visit to be covered.
So, it’s best to check with your insurance provider first to get a better understanding of any requirements and coverage details.
American Medical Association. (n.d.). Informed consent.
American Patient Rights Association. (2021). AHA patient’s bill of rights.
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