A patient powered approach: moving beyond big data
The NHS has a long way to go to establish a culture of data sharing and to create efficient tools that facilitate it. At present, systems are isolated, data is not sufficiently robust or analysed to unlock its potential, and there is a lack of enthusiasm for taking “ownership” of information governance concerns. These were the findings of a Lexington Health North roundtable discussion on ways to connect innovation with improving population health management.
The event was held on day two of the Health and Care Innovation Expo in Manchester and saw guests join Stephen Dobson, Chief Digital Officer at the Greater Manchester Health and Social Care Partnership, and Dr Ben Bridgewater, Chief Executive of Health Innovation Manchester.
Greater Manchester has recently become a Local Health and Care Record Exemplar (LHCRE), receiving £7.5m from NHS England to aid implementation of integrated health care record access across the conurbation. However, it was stated that healthcare has a relatively small impact on public health outcomes, in comparison to other factors such as housing, care interventions and worklessness.
The aim is a joined-up approach to public health assisted by the creation of a carefully curated anonymised or pseudonymised pool of patient data which clinicians and others can access and contribute to. This system would allow those whose work brings them in to contact with people whose wellness might be suffering, to flag risks at an earlier stage. It would allow targeted approaches to encourage behaviour change and co-create individual care plans with patients. This shift was characterised during our discussion as a move away from “paternalistic” health care to a “patient-powered” approach.
Without yet getting close to achieving it we are already talking about moving from ‘Big Data’ to ‘Truly Massive Data’ that connects all aspects of a populations’ interactions with wider services. This could identify areas where prevention strategies would prove effective. Personalised medicine will eventually create huge new data sets that will sit alongside it, connecting genetic risk with lifestyle triggers.
There is a need for much more joined-up thinking and for the five LHCRE areas to collaborate and share best practice. Crucially, the additional funding of £7.5 million per LHCRE area is around a third of what is needed.
The role of SMEs in solving some of the issues faced by collecting and collating huge datasets has yet to be determined. Patient data integration is at an early stage and as such, areas like Greater Manchester have not yet engaged with SMEs. It was noted that a culture and language barriers exist between SMEs and the NHS. For a ‘thousand flowers to bloom’, as Simon Stevens is oft quoted as saying, SMEs and the NHS need to work out how to communicate and to overcome the barriers to innovative ideas being used to help manage population health.
Crucially the ability of the LHCREs to create a pool of easily accessible, well curated and robust data is vital, and then to link that with other broader datasets is fundamental – but will some of the industries that own those datasets, such as supermarkets, readily give them up?