{"id":169,"date":"2026-09-28T10:31:28","date_gmt":"2026-09-28T09:31:28","guid":{"rendered":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/?p=169"},"modified":"2026-09-29T16:44:22","modified_gmt":"2026-09-29T15:44:22","slug":"data-as-an-enduring-resource","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/data-as-an-enduring-resource\/","title":{"rendered":"Data as an enduring resource: Research for now, and for the future"},"content":{"rendered":"

By Liz Merrifield the Data Governance Lead in\u00a0BioResource Data Accelerator programme<\/h4>\n

A quick intro<\/h2>\n

Hi, I\u2019m Liz, and I have worked in research within Cardiff University for over 20 years \u2013 that sounds like a long time. When I started out Maroon 5, and OutKast were making a hit in the pop world scene, and the UK Clinical Trials Regulations was doing just the same in my own world. A lot of time (and good\/bad music) has passed since then, and we are now doing research that patients and the public couldn\u2019t even imagine to be possible back then as routine care now.<\/p>\n

Healthcare and research are both intrinsically linked, and cumulative in their gains: the treatments we see as standard today could not have been possible without building on the successes and failures learnings of the past (think where we’d be without Socrates, Hippocrates and Pythagoras). We have had the opportunities to question and to push boundaries facilitated by huge leaps in what is possible from a technological perspective in recent history. We want to live longer and healthier lives, and science, research and healthcare will enable us to achieve this.<\/p>\n

But hold one, this blog was meant to focus on data as an enduring resource, wasn\u2019t it? This is correct, and it is important that in a world where we are a multitude of individuals, working to realise these collective goals for our lives or our research, that we understand how the actions we take now could help, or hinder us in the future:<\/p>\n

A well-designed but poorly-executed, poorly-communicated research project may have had a big impact, but it\u2019s inability to demonstrate its robustness and longevity will ultimately lead to its downfall and lack of future relevance.<\/p>\n

On the other hand, a well-designed, well-executed, well-communicated research project is the gold-standard. It will adhere to rules and regs, and policies, and everyone will be able to understand where its relevance lies in an ever-expanding multimodal landscape, and where guard rails can be applied to protect the rights and identity of the individuals from whom the data was donated from when used in the future.<\/p>\n

So, the rule here is that research must be considered to the extent that outsiders or colleagues (friend, or foe) can understand and access the data\/research and re-use it, whilst being able to trust that it is correct long after you have closed your lab book or moved on to the next data challenge.<\/p>\n

Okay, so now we understand why, I\u2019d like to provide a couple of examples within health research of where future planning regarding data has impacted research activities.<\/p>\n

New Data Protection Regulation<\/h2>\n

Healthcare research is governed by legislation, regulation and policies which are often imposed on us \u2013 to give an example, in 2018 the UK General Data Protection Regulation came into force. This regulation was a UK application of the EU law by the same name, a set the rules on how individual data could be accessed, processed, stored and shared. I was working within clinical trials at the time, in the role of a Quality Assurance Manager, and a change in regulations can only mean one thing: a medium scale headache until it\u2019s impact is understood and accommodated.<\/p>\n

The Centre for Trials Research had a large portfolio of research projects which were either in development, actively recruiting participants, in the analysis phase, or archived. Therefore, the impact of the UK GDPR was felt across a smorgasbord of projects, managed by a variety colleagues, some of whom were no longer in post. Therefore, it was important to understand the impact that GDPR had on the collection and handling from data multiple perspectives \u00a0– affecting the past, present and future use.<\/p>\n

Only by systematically working through each research project and understanding the implications of the regulations could we then establish whether there was a need to consider the conditions on which the data was obtained. Only through going through this process were the trial teams able to determine, on a project-by-project basis what could and what could not be used in the future.<\/p>\n

This process was important to demonstrate that the trial teams consider upholding regulation to be a fundamental part of their job, and that research integrity is above all the most important consideration whilst working in this environment.<\/p>\n

The impact of research amendments<\/h2>\n

When patients consent to be part of a research project, we have encouraged their understanding of what we are doing and hoping to achieve with their data.<\/p>\n

Sometimes things change, either a patient changes their mind, the project has an amendment which fundamentally affects the conditions on which we obtained consent, or unfortunately, as is the way with research in human disease, the patient dies. As researchers we must think about, and attempt to plan for all eventualities with a comprehensive plan of what to do in any given circumstance. I am sure you will appreciate that this is not always possible and the decisions which we take now could positively or (often, frustratingly) negatively impact on the model of consent and how we hope to use it.<\/p>\n

The mechanism by which we deal with these changes is as important as the act of making these changes. Again, it is important to take a systematic approach to understand the impact of decision-making especially when it comes to consent, documenting what the changes are, who\/how they are impacting within the research cohort and how to best manage the change and mitigate any risks which come about. Where patients can be informed about changes, this absolutely should happen \u2013 and through the correct medium.<\/p>\n

Sometimes, this can be relatively simple, and re-consenting patients may be an option. However, in other circumstances it may not be possible at all (e.g. due patient mortality, patients who are lost to follow-up, a change of mental capacity), and substantive changes can completely prevent the ongoing use of data, or inability to collect and analyse additional data from a particular cohort of the entire dataset leading to exclusion of vital data fields. Where these challenges cannot be overcome, we need to document who\/what is affected, and only utilise data for which we are allowed.<\/p>\n

It\u2019s true that a well-designed study, finely crafted by subject matter experts could potentially anticipate many issues, and prior experience (if we choose to learn from it) and established processes and will enable us to do just this. But it isn\u2019t always the case \u2013 researchers don\u2019t always write everything down, they move on to other organisation and are fail to communicate past decisions. It\u2019s life, but we need to have robust systems in place to deal with this.<\/p>\n

The ethical side of data collection and retention<\/h2>\n

There are a are very similar set of considerations research teams need to document when they justify collecting individual data modalities, especially if that through collecting data under a broad ethics model they are hoping to enable future, undetermined research. Researchers have a responsibility to patients, the public, funders and regulators that their activities are legal, robust, ethical and in public interest. If the research community wish to continue to have access to data, it is incumbent on them to continue to make information available to the general public as to how and why we continue to use their data.<\/p>\n

Justification of individual data variables<\/h2>\n

Although the community may have an inkling as to the future, It is impossible to know what we want to look at within an individual patient\u2019s healthcare record in twenty years. It is impossible to know which path research will have taken by then. We know that for the moment, as researchers, our responsibility is to protect the value and credibility of the data that we do collect, and aim for that data to have future utility.<\/p>\n

When designing a project involving the capture and analysis of healthcare data, it is often a wish of the PI to have as much data as they are able to obtain, whether that is through direct data capture through research nurses, through patient reported outcome measurements, or whether it is achieved through data linkage via national data platforms. Each of these variables has an economic and also ethical component.<\/p>\n

It is by consciously going through a process of justification as to what data is required to answer a research question that we can provide the necessary assurances to an often sceptical or concerned public that the research data they collect now will be beneficial to the future. It also facilitates regulatory bodies (the Health Research Authority, Medicines and Healthcare products Regulatory agency, Information Commissioner\u2019s Office) that we are producing legitimate and robust research.<\/p>\n

As a responsible research community we must show genuine empathy for the patients and public who donate their samples and data, and care for the precious commodity on which we make our assumptions, observations and draw conclusions. After all, the public\u2019s trust in research is earnt in spoonfuls, and lost in bucketloads.<\/p>\n

Data as an asset<\/h2>\n

Again, touching on the noughties, technology was completely different: it was the era of the widespread adoption of the USB flash drive, CD-R\/CD-RW were the defacto media and MP3 players were becoming increasingly popular whilst 3.5 inch floppy discs were all becoming relegated to a pile in the cupboard. If all of this sounds like it is outmoded – that\u2019s because it is \u2013 it\u2019s old, largely defunct tech.<\/p>\n

But what happens to the data which is stored on these devices? Well, like its media, without the ability to be utilised with modern technologies and methods, sadly it too is destined for the bin.<\/p>\n

Again, it is very difficult to predict where technology and data retention is going to be in as little as 10 years, and therefore, if we are to value the data that we have curated to date, it is extremely important to consider how we understand it as a potential asset in the future. It could potentially lead to life-changing discoveries or become commercially viable.<\/p>\n

Some methods to safeguard data from becoming obsolete include:<\/p>\n