Care.data, the key to improving patient care?

We are very fortunate in England to have some of the very best healthcare services in the world supported by substantial levels of data recording patient activity and outcomes both in the primary and secondary care settings. The data collected in primary care is rich, complex and vast. In primary care, data is recorded in real time at the point of consultation, official statistics suggest that over 95% of the population see their GP at least once every two years resulting in more than 300 million primary care consultations a year. In addition, Hospital Episode Statistics (HES) processes over 125 million admitted patient, outpatient and accident and emergency records each year. This data is collected during a patient's time at hospital and is submitted to a national data processing warehouse to allow hospitals to be paid for the care they deliver via the Payment by Results system (PbR), recording care within the acute hospitals, primary care providers and mental health trust settings.

Sharing information across the NHS helps ensure that the quality and safety of services is consistent across the country, highlighting different diseases and conditions that may require more investment.

Healthcare data of the future

Under the Health and Social Care Act 2012, NHS England is commissioning a modern data service from the Health and Social Care Information Centre (HSCIC) on behalf of the entire health and social care system, known as care.data. This programme will build on existing data services and expand them to provide linked data that will eventually cover all care settings, both in and outside of hospital. For example, during the initial stages of the program the intention is to link HES and primary care data extractions together.

The project is not without controversy. It has come under criticism and was pushed back from an April launch date until Autumn 2014 following patients, doctors and other professional organisations raised concerns that they had not been given enough time to learn about the proposed data extraction programme.

Sir John Savill, Head of Medical Research Council, told the Times newspaper in March: "It could turn the UK into the best clinical laboratory in the world and the benefit would be felt first in the UK. This could change the game in health research and healthcare. The act of studying de-identified data in a safe haven without specific consent does not to my mind threaten confidentiality. Most people, once guarantees of doing our best to protect confidentially are explained, would say this is a no-brainer." He added that linking medical research studies with the care.data scheme would further help the NHS meet the challenges of an ageing and more demanding society.

Critics of the scheme argue that the data once extracted is not totally secure and patients could theoretically be identified. They have argued that there should be a comprehensive and, given the scale of the issue, independent privacy impact assessment, questioning the real motive for the use of this data; is it truly a vehicle to improve quality care for all, or is it a commercial opportunity?

The real questions to consider are:

1. Do the NHS, politicians and the general population have the desire to make this happen?
2. Can the release of NHS data in a non-identifiable non-sensitive form contribute to the improved care or patient and health outcomes?
3. Do critics of the program have a valid argument regards the release of this data?

Politicians have a desire to make this happen!

NHS England has heard from GPs, professional bodies and patient groups that more needs to be done to ensure that patients and the public have a clear understanding of NHS England’s intention to use patient data held by GP practices for purposes beyond direct health care. In particular, greater assurances are sought on issues such as patients’ right to object, protecting privacy, the burden on GPs, and the controls around how data held by the Health and Social Care Information Centre (HSCIC) will be accessed and used.

On the 18th March 2014 the Public Administration Sub Committee published a report following a discussion about public data including healthcare data that said: “…there are unparalleled opportunities to harvest unused knowledge that otherwise goes to waste, which can be used to empower citizens, to improve public services and to benefit the economy and society as a whole”.

The committee highlighted the importance of the Open Data programme both in terms of holding public organisations to account, but also as a key driver to UK economic growth.

”The Government must work closely with business and nurture new open data enterprises by providing the environment they need to grow. The Open Data Institute is a welcome recent development. It has worked to help develop some start-up businesses based on open data and has been a hub for knowledge, but its impact is far from clear and now needs to be felt more widely.”

Patient care improved through the use of data

NHS England state that ensuring the information is shared for “best care” and to promote excellent research is central to the vision encompassed by the care.data programme, as is protecting confidential information. Access to NHS data is a key to both the NHS and the pharmaceutical industry.  By appropriately analysing NHS data individually and in partnership, the NHS and pharmaceutical industry have been able to demonstrate improvements to the quality of healthcare management and service delivery, understanding the real clinical and economic impact of new medical technologies and ultimately improve patient care.

Communication and transparency is key!

To address the issue of patient identification and security, the care.data programme has established an advisory group chaired by Ciaran Devane, Chief Executive of Macmillan Cancer Support and an NHS England’s non-executive director. In May, the Care Bill received Royal Assent and became the Care Act and for the first time made clear a statutory basis for sharing information that will enable the analysis of patient outcomes across health and care services. The new law means that a patients’ data can only be shared and analysed when there is a benefit to healthcare, never for other purposes, and that all uses will be scrutinised with full transparency by an independent statutory body. In addition, there will now be a legal basis for people to stop their data being shared if they wish to.

Conclusion

Of course data on its own doesn’t save lives, but appropriate analysis of good quality data can support action that will. Without best in class data, we as a healthcare community will not be able to assess what is required in an increasingly cost-pressurised NHS. We need look no further than Denmark or Canada where sharing primary care data is normal not controversial, and is considered crucial, not risky. We as a healthcare and pharmaceutical community need to step up to the challenge and support the NHS with this important initiative. 

OPEN Health hosted a conference on 23 June 2014 entitled Health Innovation: Big Ideas.

About Author

Tim Abbott is Director of Business Intelligence and Analytics at Harvey Walsh, and has worked within the healthcare industry for over 15 years. Tim spent the first part of his career working client side at Sanofi, rising to Health of Business Intelligence for the UK. Since then, he has continued to work within the arena of analytics, business intelligence and market access.

About Harvey Walsh Ltd

Harvey Walsh, part of OPEN Health Communications group, is the leading supplier of healthcare intelligence and value based market access solutions to the pharmaceutical and devices markets.  We are unique in that we work with both pharma and the NHS, which gives exceptional insight and knowledge into the challenges faced by both sectors; working with the NHS gives unrivalled expertise into how the data should be used to create the evidence the emerging NHS now needs in making value based decisions to improve patient care