When setting up a disease registry, there are several things to consider, such as choosing your registry type (for example, patient registry, natural history or clinical), engaging participants, and financing the project.
However, you should not overlook how you plan to use the data collected to ensure that your registry is a tool that actively contributes to your cause, and not just a glorified Rolodex.
This is where a data scientist comes in, and why you should give serious consideration to adding one to your registry management team.
What is a data scientist?
Data scientists play a vital role in navigating the process of evidence generation, helping organizations to define the right data and subsequently process and interpret data to solve complex issues using that information. In essence, they take raw data, and turn it into information which is of practical value to stakeholders.
In the context of disease registries, this is particularly valuable, as improving the opportunity for successful treatment and the quality of life of patients depends on research carried out using your registry.
However, if that data is in its raw form, without any context or practical application, it increases the time required for researchers to process it, interpret it and use it in their work.
By crunching the data as they arrive in the registry, a data scientist can start to identify patterns around subjects such as drug behavior or disease progression and influence the path researchers take to find effective treatments and cures for rare diseases. Regulators are increasingly interested in using each patient’s prior experience when determining how to treat the next patient. Therefore, carefully curated data is important. A data scientist can help cut through the “noise” to find the “signal”.
From a practical standpoint, a data scientist that has experience in the healthcare sector is the best person to bring on to your team, as they will already be familiar with problems that you are looking to solve and the sensitive nature of the data your registry contains.
Also, because of the inherent risks of research in a healthcare setting, you need someone who understands the need for great caution when identifying patterns within the data.
There are many additional practical tasks for a data scientist to undertake, such as carrying out audits, archiving out-of-date information for future use, or even leading on your data security strategy to ensure you comply with local and international law.
As we have mentioned before, collecting and storing data comes with a range of legal and ethical considerations, and you must comply with a range of laws or risk tough sanctions and a potential lack of trust from future contributors.
Around the world, different laws govern the use and management of data, the main two being the Health Insurance Portability and Accountability Act (HIPAA) in the United States and the General Data Protection Regulations (GDPR) in the European Union.
Both give enhanced protections for individuals but have a different focus – other than the obvious geographical ones – and a good data scientist will be well-versed in the requirements of these and all other data laws that concern your project.
Finding the right person for your team
With all this in mind, you might be worried about how to find a data scientist that will be a good fit for your project.
Multinational consultancies all have teams of data scientists that can be brought in to support organizations with ongoing projects; however, if you go down this route, it is important to ensure that the person assigned to you has experience of healthcare and that you determine and define what you expect to be delivered.
Specialist recruitment firms can also help you find someone to add to your team permanently. When interviewing, you may wish to have a member of your research team or a scientific advisor on the panel to help you find the right person.
At Pulse Infoframe, we have an integrated team of specialist data scientists to ensure we provide a holistic service giving you the highest quality output and support for data, compliance, and security. This means you can rest easy, knowing your data is in safe hands.
For more information on Pulse Infoframe and our Rare Central evidence generation platform, email firstname.lastname@example.org