Editorial article
Administrative data and clinical care
Los datos administrativos y la asistencia clínica
Raquel Barba
Área Médica, Hospital Universitario Rey Juan Carlos, Móstoles (Madrid), Spain
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This makes them very compelling for research.<a class="elsevierStyleCrossRefs" href="#bib0010"><span class="elsevierStyleSup">2,3</span></a> The studies derived from these databases tend to have great potential due to the sample size<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4,5</span></a> and they are used, overall, for epidemiology, efficacy and safety purposes.</p><p id="par0015" class="elsevierStylePara elsevierViewall">Many researchers show a certain “reluctance” to using these types of databases.<a class="elsevierStyleCrossRefs" href="#bib0015"><span class="elsevierStyleSup">3,6</span></a> The most frequent criticism is the lack of precision of the codes used to identify diseases. However, the concordance studies performed<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a> have shown these databases to be quite reliable. It is true that the use of filters and the experience of the encoders are important to improve quality<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> and that it is necessary to be aware of its limitations, but, in today’s world, almost no one doubts its great usefulness for clinical research.</p><p id="par0020" class="elsevierStylePara elsevierViewall">It is important to know that these databases have generally been created for reasons other than clinical research<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> and that the reason behind the creation of a specific database may imply a bias with respect to the type and quality of data recorded. In general, if someone “benefits” from the data of such a database, the quality of the data will be higher: for example, if the database is used for the payment of the activity, the records will provide more details about the activity carried out.<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> Therefore, it is essential to know the purpose for which it was created to better understand its advantages and disadvantages.</p><p id="par0025" class="elsevierStylePara elsevierViewall">It is also important to know the database structure,<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> for example, if the records are encrypted and who is responsible for the encryption. The study description should state whether the record refers to a patient, an episode (outpatients, hospitalisation, emergency department, etc.), medication administration, the performance of a test, etc. In addition, all the variables contained in the database (rows and columns) must be specified, which will allow the degree of possible bias to be inferred. A database that collects laboratory data, which is probably very reliable and complete since it does not require any data modification, is not the same as a database in which diseases have to be encoded.</p><p id="par0030" class="elsevierStylePara elsevierViewall">This aspect is especially relevant when clinical data are transformed into codes<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a>: the chain that exists from the data to the code can gradually add errors that must be taken into account: the doctor has to know the disease, reflect it properly in the report so that the coder understands it and the coder must use the most appropriate code. Any break in the chain will contribute to worsening the data quality. Finally, filters that avoid errors are important (for example, a male cannot be given an obstetric code).</p><p id="par0035" class="elsevierStylePara elsevierViewall">When researching with administrative databases it is essential that all these aspects appear in the material and methods, so that the reader of the studies can understand the database limitations or potential biases.<a class="elsevierStyleCrossRefs" href="#bib0030"><span class="elsevierStyleSup">6,9</span></a> In addition, it is useful that other studies that have used that particular database are cited.<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">The use of these databases has advantages for medical research, since, as a general rule, the data collection is structured leading to uniform data. They are available electronically and are already formatted for use (information is routinely collected), which means their use for research is inexpensive. They almost always have a lot of data and records (patients, episodes, etc.) and are usually representative of the population of interest.<a class="elsevierStyleCrossRef" href="#bib0050"><span class="elsevierStyleSup">10</span></a> In addition, they provide data from the real world. As the spectrum is so broad, information can be found on unusual or severe events, or small but relevant differences can be detected. They tend to avoid selection biases, since the database includes all existing cases.</p><p id="par0045" class="elsevierStylePara elsevierViewall">Many of these registries include several hospitals, with different geographic locations, which allows us to make comparisons between sites. They may contain economic information which can help certain research studies, and as data is collected over a length of time, this aids studies regarding temporal trends.<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a></p><p id="par0050" class="elsevierStylePara elsevierViewall">A large number of administrative databases are public and are available to any researcher who wishes to consult them and use them for research. An example is the Spanish Minimum Basic Data Set (MBDS), or the <span class="elsevierStyleItalic">Nationwide Inpatient Sample</span> in the USA. In general, these databases describe the inclusion and exclusion criteria and the definition of the items.<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a></p><p id="par0055" class="elsevierStylePara elsevierViewall">Obviously, it is not all advantageous as there are also limitations. The clinical information provided is not complete and there may be errors in data collection.<a class="elsevierStyleCrossRefs" href="#bib0010"><span class="elsevierStyleSup">2,12</span></a> When there are errors produced at the origin of the data collection process, they are very difficult to correct. The databases are not usually very exhaustive in clinical aspects and data collection may be performed by non-medical personnel, with the bias that this may have. The standardisation of the collection implies that some details or nuances are lost and, on occasions, the administrative interest for which the information is generated is not the same as the clinical interest, so data that is important for some research studies may be missing.</p><p id="par0060" class="elsevierStylePara elsevierViewall">The main objection often raised about these records is that of “data accuracy”.<a class="elsevierStyleCrossRefs" href="#bib0025"><span class="elsevierStyleSup">5,6</span></a> Some administrative databases use a main code and several secondary ones. There is not always unanimity when defining which is which and the ability of the coder to transfer the clinical reality of patients to the database is often questioned. Furthermore, the diagnostic codes do not always reflect the severity of a condition and when the records are from hospitalised patients, the information goes no further than hospital discharge, without knowing the subsequent evolution of the process.</p><p id="par0065" class="elsevierStylePara elsevierViewall">Finally, since the bases have not been designed<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> to ‘answer a research question’, a post validation of the results would be appropriate on databases designed to investigate a specific disease.</p><p id="par0070" class="elsevierStylePara elsevierViewall">With all these nuances, it is clear that administrative databases are not going to replace registries or medical records, but they can complement the information and help when researching, by allowing, above all, the generation of hypotheses or the discovery of some associations.</p><p id="par0075" class="elsevierStylePara elsevierViewall">There are many examples of administrative databases whose data are used for medical research. Here in Spain, the MBDS is well-used.<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> This database was regulated for the first time on 14th December 1987 by the Interterritorial Council of the National Health System (SNS), which approved the number and content of the data to be included. Subsequently, Royal Decree 69/2015, of 6th February, which regulates the Specialised Health Care Activity Register, established the new structure and content. The MBDS is a mandatory database that the management of all hospitals must send to the Ministry of Health of their autonomous region and to the Ministry of Health and Consumer Affairs with certain periodicity. The registry collects the data generated in each contact of a patient with a specialised health care provider, both for the inpatient and outpatient settings (day hospital, outpatient surgery, emergency departments, resource-intensive procedures, and home hospitalisation). More than 90% of the hospital clinical events both in public, concerted, or private hospitals are collected in this database.</p><p id="par0080" class="elsevierStylePara elsevierViewall">The MBDS has made it possible to have a standardised data source that, in addition to its usefulness for hospital management, is also used for the implementation of new financing systems, to define performance and utilisation indicators, to control the quality of care, and for clinical and epidemiological research. It has enabled the development of operating standards for various versions of “groupers” for widely disseminated patient cases (DRG — diagnosis-related groups), which in turn allows for relative costs and reference weights for the National Health System to be calculated on a sample representation of hospitals. The MBDS is the largest administrative database on hospitalised patients and the main source of information on morbidity treated in our country, and it contains very valuable information on multiple aspects of hospital activity, including the quality and variability of healthcare practice. The Spanish Ministry of Health and Consumption has been, since its approval, responsible for managing the databases of the state MBDS, and it generates various official statistics on an annual basis.</p><p id="par0085" class="elsevierStylePara elsevierViewall">But, in addition, the MBDS is used for clinical studies.<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a> For research, the Ministry of Health transfers data (extractions from MBDS registries) when requested by the researchers, under certain conditions. A request must be made, in which the objective of this is stated, and a confidentiality and statistical secrecy clause is signed, according to Organic Law 3/2018, of 5th December, on the Protection of Personal Data and Guarantee of the Digital Rights and the Law of the Public Statistical Function (Law 12/1989), which prohibits the dissemination of information regarding the objects of their protection.</p><p id="par0090" class="elsevierStylePara elsevierViewall">Another example is the American project Healthcare Cost and Utilization Project.<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> This contains data on admissions, outpatient surgery, consultations and emergency department visits carried out since 1998, with demographic data and diagnosis and treatment codes, of 20% of the patients who are admitted in the country, which is about 5–8 million per year. These databases allow research on a wide range of health issues, including cost and quality of services, patterns of medical practice, access to healthcare programmes, and treatment outcomes on the national, state, and local level.</p><p id="par0095" class="elsevierStylePara elsevierViewall">In conclusion, we can say that administrative databases offer numerous opportunities for research in the healthcare world. Knowing their limitations and biases helps us to value the results of the studies carried out with them, but it is important that we acknowledge that they are an essential source in current research.</p></span>" "pdfFichero" => "main.pdf" "tienePdf" => true "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Barba R. Los datos administrativos y la asistencia clínica. Med Clin (Barc). 2021. <span class="elsevierStyleInterRef" id="intr0005" href="https://doi.org/10.1016/j.medcli.2020.12.021">https://doi.org/10.1016/j.medcli.2020.12.021</span></p>" ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:15 [ 0 => array:3 [ "identificador" => "bib0005" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Prisioners of the proximate: loosening the constraints on epidemiology in an age of change" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "A.J. 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