When it comes to data, we wonder, how is clinical data used, what is it used for, does it help medical breakthroughs.
We often tend to think about numbers, corporate jargon, and confusing terms. However, regarding the medical profession, Because of the complexity of medicine, it is often difficult for people to understand the meaning and purpose behind a clinical trial and its results.
For that reason, many doctors have addressed the subject in their books, publications, and speeches. Let’s look at the key points of how clinical data is collected, how it is used, and its different effects.
1. What is Clinical data?
As a simple definition, Clinical data can be referred to as the information about a report of distinct patients who have been diagnosed earlier or had some relation with the health needs which are being recorded in the medical (or clinical) facility.
2. How is Clinical Data Used?
Clinical trials, just like any living thing, have a life cycle. It starts with the collection of different types of data, which are then converted into data sets that can be analyzed to address the research question in play.
2.1. Types Of Clinical Data
- There are several types of clinical data, with the purest form being Electronic Health Records (EHR).
- The other major clinical data types include claims, administrative, health surveys, patient/disease registries, and clinical trial data. All these forms of data are collected and used differently.
- For example, Electronic Health Record data is used to collect diagnosis, treatment, laboratory tests, hospitalization, prescription drugs, administrative and demographic information, physiologic monitoring data, and more.
2.2. Data is Available to whom?
- Data collected from clinical trials can be available to organizations, higher-education institutions, and more.
- It can be used as the main information resource for medical research and health professionals.
- Through clinical data, research can evolve and contribute to the expansion and creation of treatment options, recovery rates, and overall health improvement.
- A prime example of how clinical data has been used for a medical breakthrough is the examination of tumors or tumor samples in biobanks to create a better treatment option for the patients affected.
2.3. What Should People Know About Clinical Data?
Acknowledging that clinical data is used for research, medical improvements, and the care of patients, what should people know about clinical data?
2.3.1. Importance of Consent for Clinical Data
Firstly, your data shouldn’t be used without your consent.
- Your acceptance of giving data should also be based on a knowledge of the data, its use, and its purpose overall.
- Before giving permission to access your data or undertaking a clinical trial, it is essential to understand the risks, structure, and benefits of the clinical trial and data.
- Despite the importance of understanding one’s rights regarding medical data, it is crucial to know that in most of the world, consent is not a legal obligation to assess one’s clinical data.
- Additionally, in most countries, people do not own their clinical data.
2.3.2. Accuracy of Clinical Data
Clinical data remains one of the most important data types in the types of collection involved in medicine. Therefore,
- Because of the high stakes in the healthcare system, there is no place for inaccuracy, as it can cost someone’s life.
- As such, clinical data is primordial as doctors can directly use it not only to have direct access to more patients’ data but also to a specific patient’s condition.
2.4. Why Using Clinical Data is Helpful?
- Clinical data can be used to find patterns, diagnose illnesses, develop treatment plans, and improve medical services as a whole through a better understanding of both personal and in-group conditions.
- Clinical data is successfully used to understand the causes and risks associated with diseases, prevent disease through improved diagnosis and treatment options, and improve both the medical profession and patients’ safety.
- It is a more open question when addressing who or what uses clinical data. Depending on the data and where it originated, it can be used by public or private payers in some cases.
- Health organizations are storing increasingly more clinical data information for internal application as clinical data, like any other form of data, can become, in some cases, an asset to the medical profession.
3. Other Aspects of Clinical Data
There are a large number of advantages to the collection and use of clinical data; however, risks and disadvantages can occur with the process. Clinical trials often include consistency and integration limitations, quality issues, organizational restrictions, and unreliable data.
Although clinical data can have important future implications in the medical profession and the healthcare system, the most common clinical data used today is the Common Clinical Data Set (CCDS) which consists of a patient’s name and date of birth.
However small a collection it seems to be, the start of the collection of CCDS has already revolutionized 21st-century medicine.