Your health records are arguably one of the most private documents about yourself. They contain not only your general information such as name, date of birth, address, etc. But they also contain almost every detail about your health such as the diagnoses you have received, procedures you have undergone, and all the medications you take.
When you go to the doctor or any other health care provider, your medical history will be recorded and kept in a computer and sometimes paper file so the doctor can keep track of any of your symptoms and past conditions.
Over the last few decades, efforts have been made in the medical community to have become a community standard because they are more secure, the streamline the process of getting and reviewing your health information from one provider to the other, and they have the potential to avoid redundant medical tests and incorrect diagnoses by keeping up-to-date and accurate information readily available for providers.
The implementation of electronic medical records also brought a wave of concern regarding how the electronic medical records were going to protect the patient and keep their information confidential and secure at all times.
What Is HIPAA?
In 1996 the United States congress enacted Health Insurance Portability and Accountability Act (HIPAA), that among other things, mandates any person, agency or entity on the medical industry that handles your personal health information to keep it secure and confidential.
Through 18 identifiers, HIPAA lists what kind of information is legally considered personally identifiable information. Any health-related information including diagnoses, lab results, treatment plans, etc. that contain any of the 18 HIPAA identifiers is considered protected health information (PHI) and must be handled according to the law.
These 18 identifiers are:
- Address (all geographic subdivisions smaller than state, including street address, city, county, and zip code)
- All dates and elements that can make it possible to identify a person’s age.
- Telephone numbers
- Fax number
- Email address
- Social Security Number
- Medical record number
- Health plan beneficiary number
- Account number
- Certificate/license number
- Any vehicle or other device serial number
- Web URL
- Internet Protocol (IP) Address
- Fingerprint or voice recordings
- Photographic image, not limited to just the face
- Any other characteristic that could make it possible to uniquely identify an individual
HIPAA also applies to clinical research; clinical trials or any other kind of research studies that handle either directly or indirectly any PHI, must take special data safety precautions when handling this information. Data for publication, reporting, or correspondence must be made completely unidentifiable prior to release.
- Assessment of the Impact of Clinical Decision Support Systems Included in Electronic Health Recordson February 8, 2024 at 5:00 am
Conditions: Chronic Heart Failure (CHF) Sponsors: National Medical Research Center for Cardiology, Ministry of Health of Russian Federation; National Society for the Study of Heart Failure and Myocardial Diseases; Novartis Recruiting
- A Study to Learn About the Study Medicines Called Enzalutamide and Abiraterone in People With Metastatic Castration-resistant Prostate Canceron August 1, 2023 at 4:00 am
Conditions: Prostatic Neoplasms, Castration-Resistant Interventions: Drug: Enzalutamide; Drug: Abiraterone acetate Sponsors: Pfizer; Astellas Pharma Inc Recruiting
- Improving Providers' Decision-Making and Reducing Information Overload Using Information Visualization in EHRson July 10, 2023 at 4:00 am
Conditions: Electronic Health Records; Usability; Information Seeking Behavior; Critical Care Interventions: Device: AWARE; Device: Electronic Health Record (EHR) Sponsors: University of North Carolina, Chapel Hill; Mayo Clinic; University of Pittsburgh Medical Center; MedStar Health; National Library of Medicine (NLM) Recruiting
- Implementation and Evaluation of a Rare Disease Algorithm to Identify Persons at Risk of Gaucher Disease Using Data From Electronic Health Records (EHRs) in the United States (Project Searchlight)on June 18, 2023 at 4:00 am
Conditions: Gaucher Disease Interventions: Procedure: Investigational procedure Sponsors: Sanofi Recruiting
- The Brain Health Study: A Pragmatic, Patient-Centered Trialon June 15, 2023 at 4:00 am
Conditions: Dementia; Alzheimer Disease Interventions: Other: Brain Health Assessment Sponsors: University of California, San Francisco; Kaiser Permanente Washington; National Institute on Aging (NIA) Recruiting
- HeartShare: Combining Omics, Deep Phenotyping, and Electronic Health Records for Heart Failure Subtypes and Treatment Targetson May 24, 2023 at 4:00 am
Conditions: Heart Failure; Heart Failure With Preserved Ejection Fraction Sponsors: Northwestern University; National Heart, Lung, and Blood Institute (NHLBI); Massachusetts General Hospital; Brigham and Women's Hospital; Mayo Clinic; University of California, Davis; Wake Forest University Health Sciences; University of Pennsylvania Recruiting
- THIRST Alert Trialon May 22, 2023 at 4:00 am
Conditions: Fluid Overload; Congestive Heart Failure Interventions: Behavioral: Fluid restriction; Behavioral: Free fluids Sponsors: University College, London; University College London Hospitals (UCLH) NHS Foundation Trust; National Institute for Health and Care Research (NIHR) UCLH Biomedical Research Centre Recruiting
- Liquid Biopsy Based NGS in Newly Diagnosed NSCLCon May 11, 2023 at 4:00 am
Conditions: Non Small Cell Lung Cancer Metastatic; Newly Diagnosed NSCLC; Non-Squamous Non-Small Cell Neoplasm of Lung Interventions: Behavioral: iNUDGE Sponsors: Charu Aggarwal; Loxo Oncology, Inc. Recruiting
- Keck Medicine of University of Southern California Thrive Studyon March 23, 2023 at 4:00 am
Conditions: Burnout Interventions: Behavioral: Emotional Wellbeing; Behavioral: EHR Skills Optimization; Behavioral: Performance Improvement; Behavioral: control Sponsors: University of Southern California Recruiting
- Children at Risk and Oral Health, The Dental Record Studyon March 17, 2023 at 4:00 am
Conditions: Child Abuse; Child Neglect; Child Maltreatment Sponsors: Oral Health Centre of Expertise in Western Norway; Childrens advocacy center Bergen Norway; The public dental health service Vestland Norway; Oral Health Center of Expertise Rogaland, Norway Recruiting
- Enhanced Multicomponent Proactive Navigator-Assisted Cessation of Tobacco Use in Low-Income Patientson March 1, 2023 at 5:00 am
Conditions: Tobacco Use Cessation Interventions: Behavioral: EMPACT-Us Sponsors: Family Health Centers of San Diego; University of California, San Diego; Tobacco Related Disease Research Program Recruiting
- An Electronic Health Record-based Approach to Increase PrEP Knowledge and Uptake: the EMC2 PrEP Strategyon February 2, 2023 at 5:00 am
Conditions: HIV Infections; Electronic Health Record; Primary Health Care Interventions: Behavioral: EMC2 PrEP Educational Tool; Behavioral: Discrete Scheduling of a Dedicated PrEP Visit Sponsors: Northwestern University; Merck Sharp & Dohme LLC Recruiting
Do I Have Control Over My Health Records?
In the United States, different states have different laws regarding the extent of the access and ownership each patient has over his or her medical records. In 49 states except New Hampshire, the patient cannot claim legal rights over their medical record, and must follow different rules to obtain them.
Some doctor offices upload patient’s medical records to a secure web portal where the patient can access his or her record. However, doctors are not obligated to do this nor to disclose the entirety of the patient’s record.
However, with the exception of psychiatry and psychotherapy notes, which you don’t have the right to access, in all states youhave the right to request a copy of your medical records and they must be provided to you. Also, providers also must ask your explicit permission before sending your records to another medical provider or third party.
What Can I Do To Keep My Records Secure?
Though the privacy rules under HIPAA were implemented to keep your medical and personal information confidential and secure, only healthcare providers and third parties doing business with them are mandated to follow HIPAA rules.
This means that if you request your health information and want to keep it for your own personal records, you should be very mindful of how and where you will be storing it to keep it private and secure at all times.
Here are some tips on how to keep your health records secure:
- If you want to store any of your medical information in a software or app research how they keep their user’s information secure, and read their terms and conditions to make sure you agree how your information will be handled.
- Don’t post or share online any of your health information that you don’t want to be made public. Any content or information posted on the Internet may remain permanently even after you delete it.
- If you decide to store your medical records on your personal computer consider installing encryption software.
- Protect any folders or files with passwords.
- Use a strong password and don’t share it with anyone.