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How to Prepare, Plan, and Be Present \ Your Rights \ Your Right to Information

Your Right to Information

Often people do not realize their specific rights at the time of their care because those rights are either not clearly defined or are included in a bundle of papers that patients need to sign during registration. Many people think that patient rights are only applicable between themselves and their doctor. Patient rights can be extensive and can exist between patients and any medical caregivers, hospitals, laboratories, insurers, or others that may have access to patients or their medical records.

The Right To Medical Records

By law, you or your legal representative generally have the right to view and/or get copies of your personal health information from these groups:

  • Healthcare providers who treat you
  • Health plans that pay for your care, including Medicare and Medicaid

The Department of Health and Human Services explains that the federal government has limited the amounts that may be charged for copies of your personal health information and encourages doctor and healthcare systems to provide patients’ information to them free of charge. Various states have limited the amount that may be charged. For instance the Medical Board of California explains that California has limited charges to $0.25/page. Increasingly, personal health information is available through electronic portals set up by healthcare systems and doctors. You may not be charged for downloading information through these portals.

On April 5, 2021, federal rules implemented the bipartisan 21st Century Cures Act specifying that eight types of clinical notes are among electronic information that must not be blocked and must be made available free of charge to patients. OpenNotes.org has more information about this rule.

The Right To Know the Quality Rating of Your Hospice, Nursing Home or Hospital

The Centers for Medicare and Medicaid Services maintain an extensive data set on the quality ratings of doctors/clinicians, hospitals, hospices, nursing homes, home health services and other providers of healthcare that is available to the general public and easy to use. On this site you can also find and compare health and drug plans, also known as Medicare Advantage and Medicare Part D. A 5-star rating system is used to compare offerings (Source: CMS.gov).

If You Believe Your Rights Are Not Being Honored

First, speak up to your doctor. Often, issues can be dealt with quickly and easily if everyone is willing. If that isn’t satisfactory, most hospitals have patient advocates and/or ombudsmen who can help you if you have problems. They can help you with the process for registering a complaint, if appropriate. Many states have an ombudsman office for problems with long term care. Your state’s department of health or department of insurance may also be able to help. In addition, The Centers for Medicare and Medicaid have multiple venues to register complaints.

If you believe your civil rights have been violated, visit the HHS website on civil rights and healthcare to learn more and possibly file a complaint.

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CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. CaringInfo’s goal is that all people are making informed decisions about their care.  Learn more about CaringInfo.

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