Know Your Patient Rights

***This page does not provide legal advice. All links point to official organizations and government agencies.

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THIS PAGE IS STILL BEING UPDATED....

"UNDER CONSTRUCTION"

CHECK BACK SOON

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A guide to California and Federal Patient Rights​​

I was just a patient trying to ask some basic questions.

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I didn't know my rights. I didn't know which laws applied, which agencies did what, or even where I was supposed to look.

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I had to learn a lot of this as I went.

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I built this page to help myself have all the information I found in one spot because it became overwhelming for me.

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When you search patient rights laws an overwhelming amount of resources and information pops up. It turns out there are tons of different rights depending on your situation and the rights sometimes vary state by state making it even more confusing.

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I ended up finding a lot more than I expected to find.

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This page is what I wish I had when I started!!!!!​

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You are allowed to ask questions.

You are allowed to say you don't understand.

You are allowed to ask for records and information you have a right to access.

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And when somebody tells you something is required by a law, regulation, hospital policy, or insurance rule, you can ask them to show you the source.​​​

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DISCLAIMER: A Note Before You Start

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***This page does not provide legal advice. All links point to official organizations and government agencies.***

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Everything below is based on my own understanding of laws, regulations, government guidance, hospital policies, and other sources I have read.

I am not a lawyer, and this is not legal advice.

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I may misunderstand something. Laws, regulations, agency guidance, and hospital policies can also change.

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The links point to the official sources. Always read the official sources. 

Lawyers read every word of the law and so should you.

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This page is written mainly for California patients. Some of the rights discussed here come from federal law and apply more broadly to other states. Others are specific to California.

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Whenever possible, I link directly to the actual law, regulation, government agency, or other official source.

Don't take my word for it. Read the source yourself.

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Most importantly, you do not have to read this page from beginning to end.

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If you're dealing with a healthcare problem, start by finding the situation below that sounds most like yours. Click it, and it will take you directly to the section that may be relevant.

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This is not intended to be a complete list of every patient right. It focuses on rights and processes that I think are especially useful when a patient is trying to understand or resolve a healthcare problem.

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Don't see your problem on the list?

I have not fully learned all the various problems patients might have. I built this page to help understand my own problems better and added the extra stuff I have found so far.​​​

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Start Here: What Are You Trying to Figure Out?​​​​​​​​​

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1. I have a complaint about my hospital care or patient rights, and the hospital isn't resolving it.

Go to: Hospital Complaints & Grievances (click here)

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2. I don't understand my hospital bill or a particular charge.

Go to: Your Right to Examine and Receive an Explanation of the Hospital Bill (click here)

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3. I need medical records, billing records, insurance information, or other records about my care.

Go to: Getting Your Medical & Billing Records (click here)

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4. Something in my medical record is wrong or incomplete, or I want to add a correction.

Go to: Amending Your Health Record (click here)

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5. I think my medical information was improperly used, shared, or disclosed.

Go to: HIPAA Privacy & Complaints (click here)

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6. I am having trouble getting electronic health information and think it may be improperly blocked.

Go to: Electronic Health Information & Information Blocking

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7. I have my records and bills and want to figure out whether everything matches.

Go to: Understanding & Comparing a Hospital Bill

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8. I want to know what the hospital publicly reports as its prices.

Go to: Hospital Price Transparency

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9. I received an unexpected out-of-network bill or a bill much higher than a Good Faith Estimate.

Go to: Surprise Medical Bills & Good Faith Estimates

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10. My insurance company or health plan denied, delayed, changed, or refused to pay for something.

Go to: Health-Plan Grievances, Complaints & Independent Medical Review

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11. I want to complain about a hospital to somebody outside the hospital.

Go to: Complaining to the California Department of Public Health

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12. I'm having trouble paying a hospital bill or I'm being threatened with collections.

Go to: Hospital Financial Assistance & Collection Protections

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13. A collection agency or debt collector is contacting me about a medical bill.

Go to: Medical Debt & Debt Collectors

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14. I was refused emergency care, transferred, or had a problem getting emergency treatment.

Go to: Emergency Room Rights - EMTALA

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15. I am having a problem with hospital discharge planning.

Go to: Hospital Discharge Planning

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16. I think I was discriminated against or denied appropriate language or disability access.

Go to: Healthcare Nondiscrimination

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I don't know which one applies.

Go to: Who Handles What?

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I already know which law I'm looking for.

Go to: All Laws, Regulations & Official Sources

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How I Ended Up Here

Where I Started

The first resource I found was the Patient Rights page on my hospital's website.

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Later on I found the California Hospital Association's Patient Rights guide. (click to read). This was essentially the same exact information on my hospitals website under Patient Rights information.

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What really caught my attention was the bottom of the document:

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It explains that these rights come from several different sources including California Title 22, other California laws, federal Medicare Conditions of Participation, and Joint Commission requirements.

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Over time I needed to understand my patient rights better so I started reading the actual laws and regulations behind it.

I Found a Lot More Than I Expected

The California Hospital Association Patient Rights guide was the first document I found and relied on but as I needed to understand that original document better I found way more information then I expected to find.

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As I followed the laws and regulations it referenced, I began finding many other federal and California patient protections involving medical records, billing, hospital grievances, insurance appeals, emergency care, price transparency, financial assistance, collections, privacy, electronic health information, and more.

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Some of these are rights or processes I personally had to use.

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Some I never needed...but another patient might.

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I am including the official sources to everything I have found here.

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1. Hospital Complaints & Grievances

FEDERAL: 42 C.F.R. 482.13(a)(2)

LOOK AT THE RULE - Click here

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482.13(a)(2) The hospital must have a process for the prompt resolution of patient grievances and must inform each patient whom to contact to file a grievance.

482.13(a)(2)(i) The hospital must establish a clearly explained procedure for the submission of a patient's written or verbal grievance to the hospital.

482.13(a)(2)(ii) The grievance process must specify timeframes for reviewing the grievance and providing a response.

482.13(a)(2)(iii) When the grievance is resolved, the hospital must provide a written decision containing:

• The hospital contact person

• The steps taken to investigate the grievance

• The results of the grievance process

• The date the grievance process was completed

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CMS Interpretive Guidance

LOOK AT THE CMS GUIDANCE - Click Here

CMS gives additional guidance explaining how the hospital grievance requirements should work in practice.

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What Counts as a Grievance?

CMS describes a patient grievance as a written or verbal complaint involving things such as patient care that was not resolved when the complaint was first raised, abuse or neglect, or the hospital's compliance with Medicare's Conditions of Participation or other CMS requirements.

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CMS also says that billing issues are usually not considered grievances under these particular requirements. There is an exception for certain Medicare beneficiary billing complaints.

CMS further says that if a patient or the patient's representative asks for a complaint to be handled as a formal complaint or grievance, or asks the hospital for a response, the complaint is considered a grievance and the grievance requirements apply.​

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Where to find this:

CMS State Operations Manual, Appendix A (pdf)
Tag A-0118 - Interpretive Guidelines 482.13(a)(2)
PDF pages 76–78

If you're searching the PDF, search for “A-0118.”

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So before assuming the grievance rule applies, I think the first question is:

What am I complaining about?

• Is this a complaint about my care?

• A patient-rights issue?

• Abuse or neglect?

• A hospital requirement that I believe was not followed?

• Or is it primarily an ordinary billing question that may fall under a different law or process?

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What About Seven Days?

• CMS says the hospital must review, investigate, and resolve each patient's grievance within a reasonable timeframe.

• CMS says that, on average, seven days for providing a response is considered appropriate.

That does not mean every grievance must be completely resolved within seven days. CMS specifically says it does not require every grievance to be resolved within that timeframe, although most should be.

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If the grievance will not be resolved, or the investigation will not be completed, within seven days, CMS says the hospital should tell the patient that it is still working on the grievance and state when it will follow up with a written response.

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Where to find this:

CMS State Operations Manual, Appendix A (pdf)
Tag A-0122 — Interpretive Guidelines 482.13(a)(2)(ii)
PDF page 81
If you're searching the PDF, search for “A-0122.”

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How I Understand It

This is one of the most useful patient rights regulations I have found.

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My understanding is that a formal hospital grievance is supposed to be more than simply sending a complaint and hoping somebody responds.

There is supposed to be a process.

There are supposed to be timeframes.

The grievance is supposed to be investigated.

And the final written response is supposed to contain specific information.

A response that simply acknowledges a complaint is not necessarily the same thing as the written grievance resolution described by the regulation.

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How I Would Use It

If I believed my complaint fell within the hospital's formal grievance process, I would clearly identify it as a:

FORMAL PATIENT GRIEVANCE

I would:

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• state the problem as simply and clearly as possible.

• identify the specific questions or issues I wanted addressed.

• save exactly what I submitted and document when the hospital received it.

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I would also find and save the hospital's own published grievance policy.

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When I received the response, I would go back to the actual regulation and ask:

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• Did the hospital identify a contact person?

• Did it tell me what steps were taken to investigate?

• Did it give me the results of the grievance process?

• Did it identify the date the grievance process was completed?

• Did it actually address the issue I raised?

A hospital's own grievance policy may contain more specific procedures or response timeframes than the federal regulation itself requires.

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I would make sure to read both the federal rule and the hospital's own grievance policy.

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2.Your Right to Examine and Receive an Explanation of a Hospital Bill

CALIFORNIA Code of Regulations, Title 22, 70707

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LOOK AT THE RULE - Click Here

California has a specific patient rights regulation for general acute care hospitals.

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These are the parts of the regulation that stand out to me.

70707(b)(9) recognizes the patient's right to:

Reasonable responses to reasonable requests made for service.

70707(b)(14) gives the patient the right to:

Examine and receive an explanation of the bill regardless of the source of payment.

70707(c) requires hospitals to establish a procedure under which patient complaints are forwarded to hospital administration for an appropriate response.

The regulation also requires hospitals and medical staffs to adopt written policies concerning patient rights, and requires hospital personnel to observe those rights.

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How I Understand It

The part that immediately jumped out at me was the right to examine and receive an explanation of the hospital bill.

Before I knew this, I thought asking detailed questions about a hospital bill was basically asking the hospital to voluntarily help me understand it.

Then I read the regulation.

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California specifically recognizes a patient's right to examine and receive an explanation of the bill.

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That does not mean every unusual charge is wrong.

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It does not mean every billing disagreement proves that somebody did something improper.

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And this particular provision does not spell out exactly how detailed an explanation has to be or what form the explanation has to take.

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But it does mean that asking what you were charged for and asking the hospital to explain the bill is a legitimate patient rights question.

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How I Would Use It

I would start simply:

“Can you explain this bill to me?”

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Or, if there was a particular charge I did not understand:

“Can you explain what this charge is for?”

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You do not have to prove that something is wrong before asking what it means.

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If the explanation answers your question, that may be all you need.

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If it does not, I would start asking more specific questions.

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For example:

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• What service or item does this charge represent?

• When was it provided?

• Why was I charged this amount?

• What does this billing code mean?

• How many units were billed?

• Was this amount also submitted to my insurance?

• Is there an itemized bill showing the individual charges?

If something still did not make sense, I would go to the billing page I created to learn more about understanding your bill. Click Here

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Practical Tip: Try to Get It in Writing

Whenever possible, I would ask billing questions in writing.

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Written communication can create a clear record of:

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• What I asked

• When I asked it

• How the hospital responded

• Which questions were answered

• Which questions remain unresolved

If the conversation happened by phone or in person, I would consider following up with a short email or letter summarizing what I understood.

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For example:

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“Thanks for talking with me today. I just want to make sure I understood correctly. You explained that this charge was for ________. If I misunderstood anything, please let me know.”

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The hospital may not always provide every explanation in writing, but I can still create my own written record of what was discussed.

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If the Explanation Still Does Not Make Sense

If the explanation answered my question, I might stop there.

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If something still looked unusual or inconsistent, I would start looking more closely.

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Depending on the issue, that could mean comparing:

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• The itemized hospital bill

• Billing codes and descriptions

• Quantities or units

• The amounts charged

• My medical records

• What the hospital submitted to my health plan

• My Explanation of Benefits

• Available hospital pricing information

I would still try to begin with questions rather than assumptions.

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An unusual charge, coding difference, or discrepancy can be a reason to investigate further.

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It is not automatically proof that anyone did something wrong.

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For a more detailed guide to reviewing hospital charges, billing codes, pricing, and insurance records, see my Hospital Billing Guide. Click here

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​3. Your Right to Your Medical and Billing Records

There are both Federal AND California laws dealing with a patient's right to access health information.

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If you are in California I think it is useful to look at both.

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FEDERAL: HIPAA 45 C.F.R.164.501 and 164.524

LOOK AT THE RULE 

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45 C.F.R. 164.524 Right of Access - Click Here

45 C.F.R. 164.501 Definition of “Designated Record Set” - Click Here

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There are two parts of the HIPAA rule that I think are especially useful to understand.

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Start With 164.524(a)(1)

This is the section that actually gives you the right of access.

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Subject to certain exceptions, HIPAA gives an individual the right to inspect and obtain a copy of protected health information about themselves contained in a designated record set.

That phrase "designated record set" is important.

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When I first started learning about this, I wasn't sure what asking for “all my medical records” actually meant.

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Then Look at 164.501 “Designated Record Set”

This is the definition I think patients should actually read.

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A designated record set includes:

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• Medical records and billing records maintained by or for a healthcare provider

• Enrollment, payment, claims adjudication, and case or medical-management record systems maintained by or for a health plan

• Other records used, in whole or in part, by or for the covered entity to make decisions about individuals

That can be much broader than simply whatever happens to appear in a patient portal.

HHS explains that, depending on what exists in the designated record set, the HIPAA right of access can include things such as:

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• Medical records

• Billing and payment records

• Insurance and claims information

• Laboratory reports

• X-rays and other medical images

• Consent forms

• Clinical notes

• Other qualifying information used in treating you, paying for your care, or making decisions about you

HHS HIPAA Right of Access Guidance - Click Here

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One Important Limitation

HIPAA does not mean you automatically have a right to every internal document an organization has ever created about you.

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The important question is whether the information is protected health information about you contained in a designated record set, and whether one of the limited exceptions to access applies.

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HIPAA also generally does not require a hospital, healthcare provider, or health plan to create a brand-new explanation, report, or analysis that does not already exist in the designated record set.

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So I would think about it this way:

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What records already exist about me, my care, my billing, my insurance claim, or decisions made about me?

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How Long Does HIPAA Give Them?

Under 45 C.F.R. 164.524(b)(2), a covered entity generally must act on a HIPAA access request no later than 30 calendar days after receiving it.

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If it cannot act within that time, the rule allows one extension of up to another 30 days, but the covered entity must provide a written explanation for the delay and tell the patient when it will complete the request.

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