NHS England has announced that Greater Manchester will become a Local Health and Care Record Exemplar (LHCRE), establishing an integrated health and care record system. NHS England will provide £7.5 million towards the cost of the project, with a further £6.8 million coming from the Greater Manchester Care Authority.

The initiative will join up IT systems across the city so that healthcare professionals can see vital patient data to speed treatment. This involves extending the use of Graphnet’s CareCentric, which connects different systems to share data, to all areas of the city; while DataWell will be used to cleanse the data, and remove duplication and errors. Other suppliers involved in the project include Civica, Philips Forcare, objectivity Ltd, ANS and Accenture.

The shared record system will encompass data from 472 GP practices, 10 acute trusts, 10 councils, 3 mental health trusts, 3 out of hours providers and 6 community providers, with the project also delivering information governance and data sharing agreements – defining who can see records and when – along with patient access to their own data.

“To deliver the best care today and in the future, it is vital that our health and care professionals can share information easily and that we use data to plan and change services to better meet people’s needs. We want patients to know that the care and treatment they receive in Greater Manchester is based on the best available information and that we will use their data safely and responsibly. [This initiative] will allow us to move forward with plans at a quicker pace and is a further testament to our devolved health and social care system and unique attributes where agencies work together to deliver improvements for the benefit of our patients and citizens.” Jon Rouse, chief officer of the Greater Manchester Health and Social Care Partnership

The project will initially focus on dementia, frailty and health visiting, aiming to improve the sharing of data between professionals supporting patients in these areas.

Shared data has been rising up the NHS agenda to improve efficiency and to prevent cases such as that of 13-year-old Tamara Mills, who died in 2015 from an asthma attack. In the previous four years she had been seen 47 times by different medical professionals but there was a failure to recognise that her condition was deteriorating  because of fragmented data records in the healthcare system.

But patient care is just one part of the agenda. The Manchester initiative will also see the setting up of a ‘DataLab’ to look at how anonymised data from healthcare records can be used to evaluate the effectiveness of medicines, new technologies and the delivery of health interventions. This is something that the Manchester-based biotech industry is particularly excited about. Manchester is attractive to researchers as it has a large population with a prevalence of lung disease and cancer. In Salford (a district of Greater Manchester) a big data study – The Salford Lung Study – co-opted real-world patients with asthma and COPD, studying the effects of treatment for their conditions using shared data records in the area.

However, not everyone is enthused by the idea of a broader range of professionals, as well as private companies, having access to their healthcare data. It also has to be said that the NHS has attempted to adopt such ideas before and failed.

In general, patients want to ensure control and privacy as much as they want the benefits shared data brings – particularly in the wake of scandals such as Google’s harvesting of 50 million US patient data records, which received worldwide coverage and stoked the fears of patients worldwide.

Awareness of both the ability to exploit their data by private companies, as well as the vulnerability of such data to hackers is now pretty high in the UK. Uncertainty over data protection provided by GDPR as the UK prepares to leave the EU is also a cause for concern. On the other hand, socialised medicine such as that provided by the NHS means that patients are generally more altruistic in their attitude to sharing their data than in countries such as the US where care is paid for by the patient. After all, under the US system the question is not just who owns the data, but where the data value should be apportioned – to the doctor or hospital collecting it, to the company processing it, and/or to the patient to help subsidise their healthcare bills.

Patients in the UK are acutely aware of the difference between ‘data donation’ and data harvesting – something healthcare and pharmaceutical companies must not overlook in their excitement at the possibilities of such an inviting data lake.

Suppliers to Manchester Shared Record Initiative

  • Civica will develop an Enterprise Master Patient Index for the secure attachment of information shared between systems to the correct person’s records
  • Philips Forcare will develop a Record Locator Service, which will enable different systems to find and retrieve records relevant to an individual in different care settings
  • Objectivity will produce a citizen app.
  • ANS will provide cloud consultancy and services.
  • Accenture will provide additional programme assurance and support the design, configuration and testing of solutions.
  • Graphnet will support the sharing of patient records.

 

Posted by Morgan Lewis

One Comment

  1. […] See also Public sector focus: Manchester invests £14.3 million in tech innovation […]

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