The challenge
The current COVID-19 pandemic has highlighted how making data available and accessible for research is crucial to answer important questions and inform decision making. However, we also know that researchers do not find it easy to access health data. Completing data access application forms and understanding what is required to submit a request can be daunting. Ultimately, it can take a long time before data access is granted.
Results from a survey published by the National Cancer Research Institute (NCRI) back in February showed that researchers consider themselves only partially successful in accessing data. When asked what they most need help with, the majority said they needed support throughout the data access process. Improved communication and guidance, unified access systems and standardised contracts were among the solutions suggested.
The NCRI survey was conducted among researchers working in academia. But similar findings were published in a report by Medicine Discovery Catapult, showing that industry researchers also experience difficulties in accessing data.
Joint efforts to improve access
In an effort to improve understanding around data access and showcase examples of datasets currently available for research, Health Data Research UK (HDR UK), the Healthcare Quality Improvement Partnership (HQIP) and NHS Digital are partnering with the NIHR Research Design Service and the MRC Regulatory Support Centre to host a researcher virtual roadshow on 25 November.
This event is open to all researchers interested in using health and social care data in their projects. It is aimed at those who have never requested access before as well as those who would like to hear more about new datasets. The event will provide an overview of the key aspects to consider when accessing health data, including governance, ethics and legal aspects.
NHS Digital and HQIP will explain how their data access processes work. They will also highlight some of the datasets they provide access to and will summarise top tips for researchers.
HDR UK will introduce the Health Data Research Innovation Gateway, a portal providing a common entry point to discover and request access to hundreds of UK health datasets. Many of NHS Digital and HQIP’s datasets, among others, are accessible via the Gateway. Researchers can also use the Gateway to discover analytical tools, publications, training, and community networks. We will also have an opportunity to discuss HDR UK’s vision for future streamlined data access and showcase current developments in this space.
A look to the future
Since the pandemic started, we have seen a large amount of work on accelerating processes and ensuring quick access to data necessary to answer priority questions.
Many data custodians have radically changed their processes and re-prioritised work to facilitate research and speed-up COVID-19 access requests. We now need to make learning from the pandemic sustainable. Involvement of both the researcher and data custodian community will be crucial to understand the gaps and apply learnings.
As this is the first of our virtual roadshows, we are keen to hear from the research community and explore opportunities to work together. Register for the Researcher Roadshow or to get involved contact Paola.Quattroni@hdruk.ac.uk