Most health data that is routinely collected in hospitals is difficult to use for research and is not easily shared with other NHS services. The majority of hospitals collect and store identifiable patient data in numerous disparate systems, making the sharing of de-identified data for research a challenge.
Specialist children’s centre Great Ormond Street Hospital (GOSH) has established a digital research unit to improve child health by optimising the use of their clinical data for research. They want to show how new ways of storing and sharing health data can benefit health research.
The aim is to enable researchers to access routinely collected clinical data and make patient data from digital tools, such as wearables and sensors, available to clinicians and patients via specialised applications on smartphones.
To develop a proof of concept, they looked at two different cycles: the ‘GOSH Research Cycle’ was enhanced by providing summaries and dictionaries, so that users could understand what the data consisted of before they accessed it. They populated the database with 20 years of clinical data, only accessible within the GOSH network. Next, they gave researchers the ability to request the datasets they required, which they did by deploying a data selection tool, allowing researchers to choose, filter, and request approval of their required de-identified datasets.
The GOSH Digital Research Environment (DRE) department receives all requests via a new data authorisation service, by their partner Aridhia, designed specifically for health data science. If approved, the de-identified data is transferred to the researcher’s online DRE Workspace where the data can be analysed, collaborations with other researchers can take place, machine learning models can be created and results documented for publication.
As a research hospital, GOSH wants to allow clinicians and patients direct access to core clinical data and other data, such as via wearables (Fitbit) and sensor data, and develop machine learning models which can be used to improve care.
To meet this need, they also created the ‘SMART App Development Cycle.’ Developers need to be able to create SMART on FHIR Apps (an app written once to run anywhere in the healthcare system), which leverages the global data standard for healthcare, within the controlled and secure DRE Workspace environment. This development process will become the blueprint for future development within GOSH, who will share best practice in this area.
Giving patients the ability to view their health data on their smartphones has the potential to revolutionise the way GOSH delivers services, and using a global standard allows GOSH to test innovations from partner hospitals around the world more quickly.
This project has enabled better availability of health data, supporting research across NHS organisations and benefitting patients and clinical staff by improving knowledge, communication and healthcare management. Safe access to data will also support future developments such as artificial intelligence, without personal data needing to be shared.
Furthermore, having the ability to develop SMART apps which can read these data would have a direct and immediate impact on functionality for patients and doctors across the health service, both in clinical care and research.
Partners: Great Ormond Street Hospital, Aridhia