National Health Information Database

Summary

The national health information database is a repository of information about patients. The database is collected from patients at designated points by medical staff. The national health information database allows professionals from all over the country to access records, regardless of their location or the insurance plan that the patients have. A national health information database is characterized by the need to acquire, analyze, and protect digital and traditional medical information. The importance of collecting such data is to enable the provision of quality health care services. Due to the increased usage of computers, paper records are quickly being replaced by digital records, commonly known as electronic health records. The database covers both primary and secondary patient records. The patient health record “is the primary legal record with details of any health care services offered to a person at any level of health care system”. These details include and are not limited to; routine clinical and/or official records, care offered to prevent certain health complications, evaluation of one’s lifestyle and its assessment and several other clinical databases.

The primary patient record is the information used by health care providers to take down their observations, actions, or instruction to the patient. Secondary patient records are derived from the primary records and they are used by the non-clinical staff to support patients in matters concerning administration, regulation, and payment of bills. An example of a National health information database is the American National (Nationwide) Inpatient Sample (NIS), which is a family of databases and software tools developed by the Health care Cost and Utilization Project (HCUP). The National (Nationwide) Inpatient Sample (NIS) is ranked the number one all-payer inpatient health care database in the United States of America, with information from almost all if not every American citizen. In the United Arab Emirates, the national DNA database is held in a facility that was started in 2010. In the following paragraph, the paper will cover the scope of the report of the health information database. In this paper, the cancer registry will be the source of input that will be applied to the environment in the UAE. The scope of information captured by this health-information management system includes past health records of the patients, doctor analyses, and the conditions of other cancer patients.

Sources of Input

The patient-health record information is sourced from the direct interaction between the primary physician and other professionals in healthcare provision. The interaction can also be between a health care provider and another person who knows the patient well, such as a spouse or a parent. One of the major sources of data is the cancer registry. The information in cancer registries is input by cancer registrars. Within the African continent, cancer registries have not been well established, hence information on cancer is minimal. Consequently, there have been many deaths in this region, some of which could be controlled if there was enough information to help in research about cancer. Some examples of country-based registries include Jordan (Jordan cancer registry), Iraq (Iraqi cancer registry) and Egypt (Tanta population-based registry). These countries have established their own cancer registries whole others like Djibouti, South Sudan, Sudan and the United Arab Emirates are in the planning stages. The United Arab Emirates enacted a law in the year 2010 to begin establishing a national health information database. In the United States of America for example, “the Surveillance, Epidemiology and End Results (SEER) and The National Program of Cancer Registries (NPCR) together collect the data from cancer patients”¹. Below is a diagram demonstrating how health-based information is collected.

Purpose of Cancer Registries

Cancer registries serve a very important role in diagnosis since they provide information about one of the major leading causes of death in the world. Cancer doctors need this cancer data in order to learn more about its causes and modes of detection, Therefore, the doctors can be able to arrest cancer at the earliest stage possible, thereby increasing the chances of finding a cure for cancer, or providing patients the correct information to help them. Cancer data contains information from pathologists and cytologists, who help drug specialists to make an effective drug for cancer. In addition, the data is important as it helps specialists to institute a follow-up on the patient. This follow-up helps the specialists ascertain if the treatment was effective or not, and physicians can deduce a pattern of the most likely clue as to why a certain drug was faulty in its operation.

Information derived from cancer registries can be used to show environmental risk factors or behaviors that expose people to a high risk of cancer, and it can therefore help specialists to advise people on how they can prevent cancer infection. Current patient follow-up serves as a reminder for cancer specialists and patients to schedule clinical examinations as soon as required and provides patients with precise information to enable them to survive or avoid cancer. Concisely, data from cancer registries reduce cancer burden by providing information that can be used in cancer control and epidemiological research, program planning by the public health departments, and improvement of the patient care sector. In the feeding data for decision support concept, data that has been collected from various points of health care provision is used by health specialists to make decisions. The advantage of this concept is that decisions are made from an informed point of view unlike when there is no data and decisions are made from a speculative or theoretical knowledge point of view.

This information is found in local databases since information is mostly collected at the local health care centers. This information would provide a completely new source of information for a national database if there were a way in which the national database can be linked to the data that has been fed into the local databases. One of the possible ways in which this data can be linked to the national health information database includes developing computer software that is able to send information directly to the national database³. The data in the database can be sent right away once it is entered at the local database, so that there is a double entry to be used in instances when the information is required at the national level. In addition, there could be a system where national database officers are sent to the different local health care centers to collect the data. This is advantageous since they can ensure all the data is sent. Better still, the government can create emirate-level databases, so that every emirate has its own database, from which the national health information database can derive its information.

Concerns when Handling Health-information Data

Since data at local health care centers is given on the merit of the patient trusting the data collector, storing the data in another source would make patients feel as if their trust had been betrayed. Sharing the information with a third party would seem like a betrayal of trust and a possible invasion of privacy. Patients may feel that their privacy has been infringed, and that their most intimate secrets have been sold. Since such information is stored in electronic devices, it is likely that it can be hacked and the machines can be broken into or stolen thereby revealing serious health reports, which can include names and details of specific people. Having this information in the national database is however good since a patient can be treated from any hospital in the nation regardless of location as their exact details can be traced from one paper-less source and in one window as their clinical work instead of having to access the information from another window or log-in screen.

Another concern when networking national-health information databases to feed data for decision-making is that some unscrupulous people may trade the information for dubious activities. This might endanger the patients as terrorists or other people with bad intentions may study the patterns of disease in the nations and use the information to make deadly weapons, viruses, or drugs, presuming they will be bought in large numbers. In addition, the information may be used to discriminate against some people, as it might no longer be plausible for a person to keep to himself or herself details about even the slightest disease or malformation they might have. Discrimination based on health status may cause stigmatization; hence, many people might cease to give correct information or any information at all. In addition, national wide data is used by international researchers to classify disease states in nations hence integrating locally collected data to the national health information database may make a country lower its disease state level, and create a negative impression for the specific country. Sharing the information may be hindered by the fear of patients that the information is going to people whom they barely know. To many people, it would be more than an invasion of privacy when they visit a new physician who already knows more about them than they can imagine. As a result, some patients may give wrong information, which when passed to the national database, may lead to the wrong diagnosis as the new doctor may adopt the past records instead of focusing on the current condition of the patient.

Implementation of the System in the UAE

In the United Arab Emirates, there are a number of important changes that need to take place before the national health information database can be established. First, the government needs to enact laws to ensure patient privacy is not invaded, and to punish severely any health care or database maintenance official who leaks out patients’ information. This will have the overall effect of making patients voluntarily offer to give their information. The government should also carry out a massive campaign and awareness at national media outlets to train people on need to provide their information, and reassure them of the safety of their information. The government should also train staff and establish a database center where secure information can be stored. In addition, the national government can set aside resources to help hospitals to attain the necessary machinery to enable easier collection of data electronically. The database will help provide medical records, eliminate duplication and reduce registration times, medication errors and the length of hospital stays within the United Arab Emirates. The government can collaborate with outside technology institutions to train local personnel and create backups for the data collected⁴. The government can also introduce innovative ways of collecting the data, and probably introduce a curriculum model.

At the level of each of the seven emirates namely Abu Dhabi, Dubai, Sharjah, Ajman, Umm al-Qaiwain, Ra’s al- Khaimah and Fujairah, the governments can start up massive campaigns to ensure the patients feel comfortable giving their information to health care providers. The emirate heads can also enact tough rules for protection and safeguarding of patient information. The emirates can also set up database center that can act as sources of information for national health information database. In addition, the emirates can set aside resources to help hospitals acquire the necessary machinery to enable easier collection of data electronically. In the hospitals where most of the actual data collection occurs, there should be high-technology machinery such as biometric fingerprint collection kits, DNA analysis machine and computers that can analyze patient information, then sort and store the information readying it to be sent to the national database. Emirates can encourage local hospitals to begin teaching people about the importance of freely giving their data as it is for their own good. In addition, the emirates can hold seminars and meetings for local people and train local leaders to encourage people to help build up the database by volunteering to give their health information whenever they are prompted to.

The hospitals should employ thoroughly vetted officers, and regularly train them on the need to be ethical and to safeguard patient information. In addition, hospitals should set up clear and tough punitive measures for staff who leak out patient information⁵. Database storage machines should be password protected, or protected with other even more safe methods such as fingerprints to ensure information does not easily fall into wrong hands. Health information “is the patient information including symptoms, disease diagnoses, protocols, and outcomes”⁶. This critical information is collected by a health-information management officer and it should be well protected. The health-information management officers who are hired should be professional, secretive, and ethical in their functioning. The officers should be highly trained in the latest information-management technology applications. The importance of this training is to help them understand the flow of work in any health care centers. This knowledge is important in both large hospital systems and the private practitioner clinics.

The health-information management officers should also be sensitized on their role in health care provision, and the need to ensure patients’ health information and records are completed appropriately, are accurate, and safeguarded. Health-information management officers enable information exchange while at the same time ensuring information protection.

Bibliography

Berg, Marc, “Implementing Information Systems in Health Care Organizations: Myths and Challenges,” International Journal of Medical Informatics 64 (2001) 143-156.

Chaudhry, Basit, and Paul Shekelle, “Systematic review: Impact of Health Information Technology on Quality, Efficiency, and Costs of Medical Care,” Annals of Internal Medicine 144 (2006) 742-752.

El Helal, Abdulbari Bener, and Ibrahim Galadari, “Pattern of Cancer in the United Arab Emirates Referred to AL-Ain hospital,” Annals of Saudi Medicine 17 (2011) 506-509.

Eysenbach, Gunther, “Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web: A Systematic Review,” Jama 287 (2002) 2691-2700.

Hersh, William, “A Stimulus to Define Informatics and Health Information Technology,” BMC Medical Informatics and Decision Making 9 (2009) 24-35.

Piccirillo, Jay, “Prognostic Importance of Comorbidity in a Hospital-Based Cancer Registry,” Jama 291 (2014) 2441-2447.

Footnotes

1. Basit Chaudhry and Paul Shekelle, “Systematic review: Impact of Health Information Technology on Quality, Efficiency, And Costs of Medical Care,” Annals of Internal Medicine 144 (2006), 746.
2. Marc Berg, “Implementing Information Systems in Health Care Organizations: Myths and Challenges,” International Journal of Medical Informatics 64 (2001), 143.
3. Gunther Eysenbach, “Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web: A Systematic Review,” Jama 287 (2002), 2691.
4. Abdulbari Bener El Helal and Ibrahim Galadari, “Pattern of Cancer in the United Arab Emirates Referred to AL-Ain hospital,” Annals of Saudi Medicine 17 (2011), 506.
5. Basit Chaudhry and Paul Shekelle, “Systematic review: Impact of Health Information Technology on Quality, Efficiency, And Costs of Medical Care,” Annals of Internal Medicine 144 (2006), 744.
6. Gunther Eysenbach, “Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web: A Systematic Review,” Jama 287 (2002), 2691.