Clinical Data Repository Lecture PDF

Clinical Data Repository Lecture 0:00 G'day first years. 0:02 I hope you're all doing well and studying well as it is almost the end of your first semester here in Villas. 0:09 Today we will be discussing our 11th lesson in his which is about clinical data repositories. 0:17 My name is Matthew Sw...

Clinical Data Repository Lecture 0:00 G'day first years. 0:02 I hope you're all doing well and studying well as it is almost the end of your first semester here in Villas. 0:09 Today we will be discussing our 11th lesson in his which is about clinical data repositories. 0:17 My name is Matthew Switji Tobuhara and I will be your lecturer for today. 0:23 Our objectives for this lecture is to discuss the essence of clinical data repositories and its different types, to explain the advantages and disadvantage of having multiple views for patient medical records, and to discuss the clinical data repositories in the Philippines. 0:42 The contents of our lecture is divided into 5 parts. 0:46 One, clinical data repositories, 2 standalone XML based interface to integrate with any his three types of clinical data repositories for multiple views for patient medical record and five, Cdr in the Philippines. 1:05 OK, Part 1 clinical data repositories. 1:10 To start off, let's find out what exactly is a clinical data repository. 1:16 So, a clinical data repository or Cdr is also known as a clinical data library or data archive. 1:24 It is a large database infrastructure containing several databases that collect, manage and store data sets for data analysis, sharing and reporting. 1:36 These represent an aggregated database of clinical information which are searchable and exportable due to standardisation. 1:46 Now CDR's exist in most laboratory institutions and can be in electronic or written format. 1:55 They consist of one laboratory results, 2 diagnostic reports and three various clinical documentations. 2:02 It integrates physician enter data with data from existing information systems including laboratory, radiology, admission, pharmacy, etcetera. 2:14 Cdr is also where both clinical data and external data are assimilated. 2:20 They can successfully depict the same sample across different points in time, both inside and outside the health institution. 2:28 OK, so these are the common information seen in a clinical data repository #1 we have the patient's demographics. 2:36 It is the first bit of data gathered and consist of basic information of a patient. 2:40 Age, gender, colour, ethnicity, income, name, allergies, occupation, residence, contact information, insurance information and medical history are just a few of the many details it includes #2 we have primary the patient's primary care providers. 2:58 So they are find as physicians, nurse practitioners, clinical nurse specialist or physician assistants, and they are the ones who provide, coordinate or assist a patient in accessing a variety of healthcare services. 3:12 And we have #3 the medication list. 3:14 It is the list of all medications a patient is taking #4 Allergy. 3:19 So an allergic reaction occurs when your immune system overreacts. 3:23 An allergen. 3:24 An allergen is a foreign material that is generally safe for most individuals. 3:29 But when an individual has allergies, their immune system fights it off like it would a virus or bacterium. 3:36 So in the Cdr, the patient's allergies should always be written in it #5 We have the hospital inpatient visits. 3:47 So this is the records of people who have visited inpatients, complete with the date, time, name and their relation to the patient. 3:56 Number six, the emergency department encounters. 3:59 So it contains a patient's history of visits to the emergency department #7 We have the outpatient practise visit. 4:09 So these are records of people who visit patients who are not admitted but are in the hospital for prolonged treatment #8 immunizations. 4:18 So records of all vaccinations taken by the patient #9 diagnosis. 4:24 It contains all records of clinical diagnosis related to the patient #10 procedures. 4:31 So a Cdr has the history of all hospital related procedures done on the patient #11 laboratory results. 4:38 So this contains complete list of all past laboratory tests and results #12 Social history. 4:46 It records a patient's distinct health related habits and socio economic determinants of health. 4:52 In contrast to things from the remainder of the medical and surgical history, items from the social history may be more sensitive and susceptible to social, political and psychological criticism. 5:05 So examples are a patient's smoking, alcohol and recreational drug interests, occupation and places they have visited in the past. 5:15 Last, we have the vitals. 5:16 These are measurements of the body's most basic function. 5:20 So the four main vital signs routinely monitored by medical professionals and health care providers include the following #1 body temperature #2 pulse rate #3 respiration rate or rate of breathing and for the blood pressure. 5:35 So blood pressure is not considered a vital sign but is often measured along with the vital signs. 5:42 Now here is an example of your Cdr or clinical data repository. 5:48 Here we can see the patient's name, birth date, address, gender, just the patient's basic demographic. 5:54 We see also the medical history, some documents related to the patient problems, medication allergies, vital signs of course, the procedures done to the patient and some immunizations present. 6:10 Also, we should not forget there is also a record of lab results. 6:14 Now, all of these are information I mentioned before and should be included in ACDR. 6:25 OK, now let's talk about the advantages of Cdr. 6:28 Number one, it can help make more informed patient care decisions for healthcare providers #2 it gives a longitudinal view of a patient's medical record, which can assist in improving patient experience, and #3 information from prior test results and procedures help avoid redundant treatment. 6:48 Now for the disadvantage. 6:50 There is only one, so most CDR's are only integrated with clinical data such as lab results, diagnosis and demographics. 6:58 But overall patient satisfaction, the amount of time the patient had to wait before being treated, and other information not directly related to the patient care might be unavailable. 7:11 Now here we have other examples of data repositories. 7:15 We have four data warehouse, data lake, data marts, and data cubes. 7:20 So the data warehouse are large data repositories that aggregates data from different sources or segments of an organisation without the data being necessarily related #2 we have data lake. 7:32 So these are large data repositories that stores and structure data that is classified and tagged with metadata #3 Data marts subset sets of data repository and it is more targeted to what the data user needs so it is easier to use and more secure since they admit or they limit authorised users to isolated data sets #4 We have data cubes, so it lists. 7:59 It is the list of data with three or more dimensions stored as a table. 8:07 Now how does the Cdr work or how does clinical data repositories work? 8:12 So the Cdr aggregates clinical data from practises, hospitals, labs and other healthcare organisations to create a longitudinal patient record that supplements the enterprise of electronic health records or E health records. 8:30 Now, as you can see here in the graph, information is sent from different certified Ehrs and sometimes a web portal. 8:40 So these authenticate trading partners, the single point of connection between different EHR platforms and it is an enabler of standardised transaction exchange. 8:52 So from the certified Ehrs, they submit information to the clinical data repository, the Cdr receives them and it is it acts as a storage for information if needed again by the hospital information systems or if they are inquiring whether a patient has a history or any history of such, for example, maybe medications, lab results or any past diagnosis, they can look it up through the clinical data repositories. 9:28 Now why do we need Cdr? 9:29 So clinical data repositories provide access to information where it is needed, creating a one stop shopping environment. 9:37 This allows the clinical staff to access a variety of patient focused information through a consistent and easy to use GUI. 9:45 Now what is GUI? 9:46 GUI stands for graphical user interface. 9:50 So access can be deployed through handheld devices, bedside computing devices, computers in physician office or computing is deployed at nursing stations. 10:02 Alright Part 2 stand alone XML based interface to integrate with any his. 10:07 So according to Bergeron, Cdr is a structured and systematically gathered storehouse of patient specific data, which is usually mirrored from a clinical application or supplemented with data from other clinical systems. 10:25 Now what is XML? 10:26 So XML stands for Extensible Markup Language, a markup language defining a rule set of encoding documents in both formats that is human readable and machine readable. 10:38 So it is used for storing and transferring data on the web and in many other applications. 10:45 Now that different levels of integration of Cdr depend on six things. 10:51 One locations, 2 indices, 3 catalogues, 4 semantic translations or equivalents, 5 syntactic structures, 6 links to external information. 11:05 Now the level of integrity of a Cdr will greatly impact its functionality. 11:10 This is because there are a set constraints that determine how easily a person can make queries for any of its contents. 11:19 CDR's vary on how they restrict the users who are granted access to the database. 11:24 This now becomes a safeguard to uphold data security and integrity. 11:31 Next, we move on to part three types of clinical data repositories. 11:37 Alright, let's start with number one study. 11:39 So a database that collects observations of a specific clinical research study. 11:45 So this encompasses research studies that include a patient's data, information or observations depending on the cases or the topic involved. 11:59 All right, we have #2 the electronic health record. 12:02 It is a database of observations made as a result of direct health care. 12:07 So this is the set of information that are recorded while inside the hospital. 12:13 So everything from lab results to doctor's diagnosis is recorded here. 12:19 Then we have #3 registry, so observations collected and organised for the purpose of studying or guiding particular outcomes on a defined population. 12:30 So associated studies are either multiple or long term and evolving overtime. 12:36 So the picture here depicts some examples of registry clinical data repositories. 12:45 Then we have #4 warehouse, a repository that adds levels of integration and quality to the primary data of a single institution, so either research or clinical. 12:59 It is to support flexible queries for multiple uses. 13:03 It is broader in application than a registry a #5 collection, so a library of heterogeneous data sets from more organisations than a warehouse, or more sources than a registry. 13:21 So it is organised to help users find a particular data set, but not to query for data combined across data sets. 13:31 Test 1 number six Federation. 13:34 So a repository distributed across multiple locations where each location retains control over access to its own data and is responsible for making the data comparable with the data of other locations. 13:50 OK, so let's move on to part 4. 13:52 Multiple views of patient medical record. 13:55 Now patient information from Cdr can be extracted and used in assessing the occurrence or prevalence of certain diagnosis, lab results or prescriptions within a set period of time. 14:06 Now it can access and analyse the number of times a particular procedure has been performed at all locations within a health system and then see the aggregate amount per region, then by facility. 14:21 Alright Clinical Data Repositories helps organisations transform large amounts of information from distinct transactional files into a unitary decision support database. 14:32 Now the dimensions used in such database are time by year, month, week or day, location, diagnosis, lab results or requests and prescriptions. 14:46 Now all those unified data should need a way of it being presented. 14:52 So we use data visualisation. 14:55 So data representation in the form of pictorial or graphical format. 15:00 It is used to analyse strengths and patterns from large data sets. 15:04 It helps in simplifying a wide array of information and it allows decision makers to derive analytical results from information presented visually. 15:14 So by visualising all the data presented, making them more congested and easier to digest and understand. 15:22 Whether there is a trend, a pattern, or something else related to the datas information. 15:32 Alright, then we'll move on to Part 5, Clinical data repositories in the Philippines. 15:40 Alright, now let's talk about the Republic Act 11223. 15:46 So it is also known as the Universal Health Care Act. 15:50 It provides the legal basis for health reforms in the country. 15:54 Now, all public and private national and local health related entities shall be required to submit health and health related data to fill health, including administrative, public health, medical, pharmaceutical, and health financing data. 16:11 Now, all health service providers and insurers shall each maintain a health information system consistent with DoH standards. 16:21 What are the standards #1 Enterprise resource planning 2 Human resource information, 3 electronic health records and four Electronic Prescription log Now The Cdr in the Philippines is the NDHR or the National Health Data repository. 16:40 It is where all health related entities will submit data to field health. 16:46 This will address the critical challenge of collecting, integrating and harmonising existing health information systems and sources of data. 16:55 This is also where submission and processing of health and health related data is considered an integral component of the health care system to promote better performance in the health system while ensuring data integrity or data protection at all levels of implementation. 17:16 Here we see the Philippines COVID-19 registry. 17:20 This means that during COVID-19, hospital information were gathered using the registry type of Cdr. 17:27 Now what is registry again? 17:29 It is where observations are collected and organised for the purpose of studying or guiding particular outcomes on a defined population. 17:38 It is associated studies where they are either multiple or long term and evolving over time. 17:46 As you can see here in the diagram, different hospital information systems upload COVID patient data to the registry. 17:54 Where data curation happens. 17:56 There is now data aggregation, data disambiguation and the ensuring of data quality and integrity. 18:05 After that, data is now sent to the date dashboard and to researchers. 18:11 The researchers now closely monitor COVID-19 and with the data that they have, they can give detailed updates on the number of new cases per day, number of fatalities and etcetera. 18:26 Alright, so that would be the end of our lecture for today. 18:29 Thank you for listening. 18:31 It is a relatively easy and short lecture. 18:34 Why? 18:35 Because critical Data repository is just your data library or archive which consists of all the data a patient has gathered all throughout his or her life. 18:47 As long as you understand the relevance of the data clinic, the data of a patient or their clinical data repositories then you will be fine. 18:58 Don't worry I will be getting the questions for my exam in my lecture only. 19:05 Here you will be the links and the book that I used for this lecture and I suggest if you have a copy then it would be good to read it but it's OK as all the information needed for you to study are in my lecture.