I am a researcher who focuses on deriving data-driven insights within the ageing space. My work centres on how we can create a pathway for access to health free-text, such as typed notes from medical practitioners (a treasure trove of useful information that often cannot be used in research due to data-access restrictions) and how that can be used to improve our understanding of later-life conditions and drive innovative health care.

Recently, I had the privilege of hosting an Ageing Data Workshop: a collaborative effort to define a comprehensive collection of data and variables that will propel ageing research into new realms of understanding and innovation so that people can remain healthy for longer into later life.

Introduction: a journey into ageing data exploration

We are all aware that many more people are living longer, and this can often be accompanied by deteriorating health, living with multiple conditions or a need for more social support. This challenges our health and social care systems to be better designed and equipped. Using data to create a better understanding of these challenges is one avenue that can help.

The workshop facilitated rich discussions on setting priorities around 'What variables are essential for your research?' 'What aspects of ageing data hold the most potential for innovation with the biggest potential for positive impact?' These questions, among others, were at the forefront of our discussions, guiding us in defining the roadmap for this ageing-data initiative.

The Aim: shaping the future of ageing research

At the heart of this initiative is DataLoch's ambition to work with the ageing-research community to curate a robust collection of data and variables specifically tailored to support research on ageing populations. This collection spans not only existing and routinely collected data but also delves into the realm of derived variables and coding schemes. 

The vision is clear: to empower ageing research by leveraging advanced methodologies such as Natural Language Processing (NLP) to extract insights from free text and applying phenotype code lists for a nuanced understanding of individual conditions and multiple long-term conditions.

The Need for Community Support: setting priorities together

In the quest to build this comprehensive repository, we recognise the immense value of insights from the ageing-research community. Their expertise and their work in public engagement gaining insight on priorities and methodologies is the compass that guides us (see some examples of engaging the public from the Advanced Care Research Centre including: Views of Frailty, Images of Care, and Health Data in Research) ensuring that our collection aligns with the real needs and priorities of researchers in the field. We are not just building a dataset, we are crafting a resource that catalyses meaningful research and innovation in ageing.

The Ageing Data Workshop: a collaborative endeavour

Our November 2023 workshop served as a starting point for collaborative thinking and idea generation. It was an assembly of researchers, clinicians, and experts in the field of ageing, all united by a shared vision of advancing our understanding of the ageing process.

Sharing existing work and engaging with Natural Language Processing (NLP)

One of the highlights of the workshop was for DataLoch to share existing ageing-research projects that we have supported: implementing the Electronic Frailty Index (EFI), incorporating in-hospital patient transfers data, and utilising 4AT (a rapid clinical screening test for delirium detection) for research. We also shared future work on the exploration of Natural Language Processing (NLP) techniques to extract valuable insights from free-text data. The potential to unlock hidden gems of information within unstructured text is immense, and the workshop participants actively contributed their perspectives on how this technique could be harnessed to enhance ageing research.

Phenotype Code Lists: bridging primary and secondary care data

A crucial aspect discussed was the application of phenotype code lists. By combining primary and secondary care data, we aim to define individual conditions and explore the intricate web of multiple long-term conditions in ageing populations. The workshop provided a platform for participants to share their experiences and insights, shaping the way forward in utilising these innovative coding schemes.

Exploring New Horizons for Ageing Data Collections

We contemplated how a collection of ageing data could benefit research, but acknowledged the challenges posed by the diverse spectrum of conditions encompassed by ageing. Our discussions delved into pinpointing where such an approach could yield the most significant impact.

Insights emerged, highlighting the pivotal role that hospitalisation plays in reshaping the ageing journey. Inspired by the British Geriatrics Society's 'Joining the dots: A blueprint for preventing and managing frailty in older people,’ we considered an idea: creating a dedicated data space for establishing a baseline in ageing research. However, the lack of funding emerged as a potential obstacle to channel efforts into this innovative initiative. This funding gap is a recurring challenge in ageing-data projects, calling for a collective effort for ageing hubs, to prioritise and propel such ground-breaking ventures forward.

Unlocking the Value of Social Care and Location Data 

Recognising that ageing research extends beyond medical records, we discussed the significance of being able to identify the care setting of individuals such as care homes. There is ongoing work in this area to seed addresses with Unique Property Reference Numbers (UPRNs) that will allow certain addresses to be flagged as care homes. This valuable data provides a holistic perspective, allowing researchers to understand not only the medical aspects, but also the social dynamics and living conditions of ageing populations. We discussed the challenges, but also the benefits, around bringing together social care data and linking these to medical records. 

Looking Ahead: a shared vision for ageing research

In the aftermath of this collaborative workshop, I am filled with optimism. The seeds of innovation have been sown, and with the support of the ageing-research community, we are poised to cultivate a rich harvest of ageing-data insights. 

The future of ageing research is not a solitary endeavour; it is a collective journey where each voice contributes to the symphony of discovery. More importantly these endeavours have real potential to change and improve how we think about and deliver care for our ageing populations. 

If you are a medical professional, researcher or data specialist interested in the ageing space and would like to help us shape the future of ageing research, one insightful dataset at a time, or you just want to know more please get in touch. To join our conversation, either connect with me (Arlene Casey) or the wider DataLoch team (Connect with Us).