In today's world, there is such availability of sophisticated algorithms, large volumes of data (big data) and significant computational power. It is astonishing. Benefits from the possibilities of predictive analysis, preventative intervention and precision medicine are only beginning to be realised.
Use of data in planning and delivering services is becoming increasingly high on the agenda of service providers. The Local Digital Roadmaps developed in 2016, IoT testbeds, Global Digital Exemplars (GDE) etc.. Many efforts are being made to understand and harness increasingly powerful and sophisticated tech available and emerging.
Empowering the patient
Citizens are becoming more and more engaged in their health data. Step and heart rate counter on current generation phones, the plethora of wearables, apps. Smart technology allows us to understand a variety of information.
One of the best ways to make patients feel respected is to understand what they need as an individual. We need to ask questions and listen to what is said. In the current healthcare climate of understaffed wards, oversubscribed clinics and sustainability issues across the country it is simply not feasible for staff to have the time to spend getting to know patients.
We need a more joined-up way of working, to reduce the pressure on staff and share vital information about patients.
Personalised care can only be tailored if the correct data sharing agreements are in place. Medical notes, imaging, test results etc. are all parts of a puzzle that should be read in conjunction rather than isolation of each aspect of a patient pathway.
How is data about health and the health sector stored? Who owns the algorithms? Who owns the data? Information governance (IG) issues withstanding, the number of places scientists, medical professionals can get data from is increasing. IG is key.
The benefits of sharing data
Mapping health data sources are no trivial task. Over the last year, the Bristol Health Partners and Elizabeth Blackwell Institute have developed a Health Data Source Inventory for the Bristol, North Somerset and South Glos (BNSSG) region and STP group. The inventory is a collection of metadata about regional health data sources and contains no information about individual service users - just an overview of what type of information is held where. Conversations are now underway with the Oxford University and NIHR led UK Health Data Finder (metadata catalogue) about hosting regional metadata. Does your organisation have an Information Asset Register? Should it? If it does, who can access it?
The policy frameworks and guidelines around sharing data / metadata is complex. Unnecessary reticence to share metadata can come from perception that all data is of the same level of sensitivity. The Caldicott Principles, the Data Protection Act (GDA) and upcoming General Data Protection Regulation (GDPR) focus on individuals data and require some metadata to be stored - but these regulations are not very instructive with guidelines on sharing metadata.
The Freedom Of Information Act (FOIA) and Reuse of Public Sector Information (RoPSI) regulation creates a compelling case for sharing metadata, and there have been many precedents around the country of CCG’s and Local Authorities making public their Information asset registers open. There is arguably an ethical case for corporations to increasingly share metadata too. Commercial sensitivities around descriptions of data constructs and other metadata is an issue if we want to optimise collective use of data. Open Data? Creative Commons and Open Source Licensing? Community Data License Agreement?
The way that healthcare is delivered can be disjointed, and the information about people held with certain services. Without the sharing of this information, it can make recognising trends and understand the future of healthcare difficult, if not impossible.
Data sharing has the potential to create vast change across healthcare settings. For the sustainability of services, it is important that the powers responsible for looking into the future have access to all of the information available. By keeping data within individual services, the bigger picture cannot be seen, and analysis of trends will be inherently flawed.
Sharing information is imperative if we want our healthcare system to be able to provide genuinely personalised and efficient care to each patient at every step of our medical journeys. Being protective of sensitive information is not a bad thing, we need Data Protection to ensure that data is used in ethically agreed on ways.
Big data has made analysis possible that we had never considered in the past, however, for this to continue we need to ensure that the right data is provided with the right agreements in place.
Written in collaboration with John Kellas, innovation and community engagement consultant, Bristol Health Partners
