The Role of Patient Profiles + Patient Profile Database Example

What is a patient profile?

A patient profile describes the comprehensive summary of health-related information for an individual patient. It includes personal and demographic details along with contact information, as well as a thorough record of clinical data. A well-constructed patient profile provides clinicians with a readily-accessible and holistic view of the patient's health status (both past and present), and is an important tool that helps guide appropriate medical decision-making. In particular, when multiple healthcare providers from disparate institutions are involved in an individual patient’s care, patient profiles help ensure that coherent and up to date information is available to each practitioner.

What should be included in a patient profile?

Several key pieces of information are typically collected and included in a patient profile:

1. Personal Information

• Date of birth (age)
• Place of birth, nationality, and ethnicity
• Sex
• Occupation
• Contact details (physical address, email, phone number, etc.)
• Emergency contacts

2. Comprehensive Medical History

• Past illnesses/injuries/medical conditions
• Prior treatments and outcomes of said treatments, including surgeries and other procedures, courses of medication, etc.
• Family history of illness and genetic predispositions (suspected or confirmed)

3. Medications, Side Effects, Allergies, Adverse Reactions

• List of all current & previous medicines, including prescription, over-the-counter, and herbal supplements
• Allergies (medications, food, environmental factors)
• Side effects and adverse reactions to any of these medications

4. Laboratory Results

• Specific diagnostic test results
• Blood test reports (lipid profiles, blood cell counts, vitamin and hormone levels, enzymes, etc.)
• Imaging studies (X-rays, MRIs, CT scans, etc.)

5. Current Health Status - could include some or all of the following:

• Reason for hospital admission or healthcare visit
• Vital signs (temperature, pulse, respiratory rate, blood pressure)
• Weight and height
• Neurological and sensory assessment
• Circulatory and cardiovascular assessment
• Respiratory and pulmonary assessment
• Nutrition and hydration status, exercise
• Urinary and stool status
• Psychological assessment

Patient profile database explained

A patient profile database is a collection of individual patient profiles, which could be gathered at the level of an organization (such as a hospital or a clinic), or for a given disease or condition. Patient profile databases act as centralized repositories that store comprehensive information about multiple individuals’ demographic information and health status and histories. Patient databases serve as a crucial component of health information management systems, enabling healthcare providers to access and maintain accurate and coherent records for multiple patients. They can also be utilized in clinical research to identify patients who might be eligible for a trial. For example, a diabetes research center may have a patient database containing individuals who have participated in past diabetes research studies, which could be consulted when enrolling patients for a new study.

Nowadays, patient profiles and the data therein are most often recorded in electronic format, such as in electronic health records (EHRs).

A recent development in high-quality patient databases is exemplified by the platform developed by Power. Power makes it easier than ever for patients to search for clinical trials themselves. When they find a potentially suitable trial, they can be shown a series of prescreening questions set by the sponsor, which allows them to determine their basic eligibility in a few minutes. A database of eligible patients is then created in the system, which the study sponsor can subsequently use to reach out to patients and help them proceed through to enrollment.

The Importance of a Well-Maintained Patient Profile Database

A well-designed and maintained patient profile database offers several advantages for individual patient care, supporting insights into health trends at the organizational or population levels, and facilitating the execution of clinical research studies based on health records and real-world data, such as retrospective observational studies.

1. Improved care coordination

Comprehensive and up-to-date profiles enable more efficient coordination among multiple healthcare providers involved in an individual patient's healthcare journey.

2. Enhanced clinical decision-making

Having access to complete health records aids clinicians in making informed patient care decisions, such as deciding on optimal treatment plans, adjusting medications, etc., leading to more personalized care by allowing comprehensive insights into the patients’ current health status alongside their past and additional influencing factors.

3. Efficient medical record management

Centralizing pertinent information within one system streamlines record-keeping processes while minimizing errors associated with manual handling or paper-based documents. Electronic records are generally more reliable and also support stronger security measures, which we discuss in more detail below.

4. Improved patient safety and continuity

Accurate and up-to-date patient profiles reduce the risk of medication or dosing errors, preventable allergic reactions, or adverse events by providing a comprehensive view of the patient's medical history. A holistic and continuous view is important for making sure that patient care decisions make sense given the entire context of the individual’s life and health history, and thus helps ensure patient safety.

5. Supports research and insights into health outcomes and trends

Patient databases also serve as an important source of real-world data (RWD), which is increasingly leveraged in RWD studies such as retrospective and observational trials, or even in place of dedicated phase IV (post-marketing surveillance) studies. As the generation of health data expands rapidly and advanced analytics capabilities improve and become more powerful with AI-based tools, the analysis of RWD for health trends at broader levels is expected to increase. We have discussed the unique importance of RWD in the article linked below:

From Data to Insights Real World Evidence in Clinical Research | Power

Features of a Patient Profile Database

A well-developed patient profile database should have various features and functionalities designed to facilitate efficient management and consultation of health records:

Structured data fields: Structured and constrained data fields support consistent inputs and easier retrieval/analysis of information by ensuring accuracy and standardization across all profiles. These can be as simple as guidelines and examples showing the correct way to enter information, or can be set up for automatic validation through edit checks in electronic systems, wherein a user would be flagged for incorrectly formatted or missing data. Structured data also supports search functionalities, which allow healthcare professionals to search for and retrieve specific information more efficiently, or which could be used to create filters to generate subsets of patients from a database according to specific characteristics.

Security: Robust encryption protocols, secure servers, and user permissions/access controls should be in place to protect sensitive health data against unauthorized access and maintain data privacy and compliance with regulatory requirements (see next section).

Interoperability: Integration of health records and the information contained in patient profiles with other healthcare systems enables streamlined exchange of patient information between different providers, while maintaining data integrity. Although interoperability is somewhat lacking, especially across different jurisdictions, it is currently a topic of interest. There is a movement encouraging a shift toward healthcare data standardization, which would enable researchers to glean deeper insights into health trends and outcomes across more varied populations. A few standardized data formats have already been set forth, such as fast healthcare interoperability resources (FHIR) and Health level Seven (HL7). The FDA already mandates the presentation of clinical data according to a standardized format known as the study data tabulation model (SDTM). For more information, see our article on clinical data integration.

Data Privacy and Security in Patient Profile Databases

Data privacy and security are paramount considerations for patient profile databases. Regulations are in place to safeguard protected health information (PHI) and personally identifiable information (PII) - two definitions used to categorize sensitive information that could be used to reveal a patient’s identity or disclose private details about their health status. The principal regulations are the HIPAA (Health Insurance Portability and Accountability Act) Privacy Rule in the US and the GDPR (General Data Protection Regulation) in Europe. These guidelines include rules on consent, data sharing and disclosure policies, access controls, notifications of data breaches, and more, and they apply to all health records, whether on paper or electronic, including patient profiles. There are potentially severe implications and penalties for data breaches, unauthorized uses or access, and inappropriate disclosure of sensitive health data. It is the responsibility of the healthcare entity managing the database to ensure appropriate protections and protocols are in place and followed by anyone with access to the database.

Effective encryption methods should be used to transform sensitive data into a coded format that can only be deciphered with authorized decryption keys, which are only accessible to certain authorized personnel. Firewalls can be set up to prevent unauthorized access to the database infrastructure, while simultaneously monitoring network traffic for potential threats. Individual user permissions should be set for each individual user, and managed securely and centrally, in order to prevent unauthorized access as well as identify any malicious acts.

For more information, see our article on data privacy and confidentiality in clinical trials:

Data Privacy in Clinical Trials: Standards, Definitions, and Best Practices | Power

Patient Profile Template and Patient Profile Database Example

If you would like to see a patient profile database example to help understand what these records might look like, have a look at the references we have compiled below:

Care plan patient - Course: NURS 101L PATIENT PROFILE DATABASE Date: - Studocu

Patient Profile Database Admin Info all 3

NURS 101L - Patient Profile Database.docx - Course (preview only)

Conclusion

Patient profiles are an essential tool in healthcare delivery and health information management. Patient profile databases support improved care and decision-making for individual patients, efficient management and oversight of medical records at the institutional and population levels, and are also an increasingly important source of real-world data used in clinical research studies aiming to understand health outcomes and trends under real-world (routine care) circumstances.