In the Health and Social Care Information Centre’s headquarters in Leeds, Dr Mark Davies sits in the same office that he occupied when the HSCIC was the NHS Information Centre.
Even the posters on the walls have not changed, and display a rather faded NHS IC logo. Yet Dr Davies describes the HSCIC as a “completely new organisation”, albeit one in the early stages of transforming into its new form.
The Health and Social Care Act 2012 gave the centre a remit to become the “focal point for collecting, storing and disseminating national data from health and social care bodies” and for publishing that data “for a wide variety of customers.”
Because of a quirk of government decision making – the decision to ‘abolish’ the National Programme for IT in the NHS – it has also become responsible for much of the work of NHS Connecting for Health.
Having taken on thousands of extra staff, the centre still finding its feet and is in the midst of a major strategic review to try and establish exactly what its new role entails, who its customers are, and how to best organise itself in order to serve their needs.
This review must take into account the government’s commitment to open data, the possibilities of ‘big data’ (the collection and analysis of very large and complex data sets) for the NHS, and the significant shift in power towards patients and the public.
Harnessing patient power
Dr Davies acknowledges that the review will have implications for the size and shape of the organisation. Meanwhile, his own role has already evolved. As well as fulfilling his previous clinical leadership duties, he is now responsible for public engagement.
“In this exciting world, where patients are to become much more equal partners in their care, we as an organisation need to reflect that shift in power. We need to make sure we are involving patients in a way that captures some of the wisdom that’s out there,” he explains.
Part his new role also involves having a “mature conversation with people about how we are using their data or not using it.”
This is no easy task. As anyone working on the Summary Care Record programme could attest, anything seen as ‘snooping’ on patients can quickly derail data-sharing projects. As can newspaper stories about laptops or other devices holding patient data being left on trains or being sold on eBay.
“I think there’s quite a mature conversation the organisation needs to have with the country about how we do business in the NHS in terms of information,” argues Dr Davies.
“I wouldn’t pretend that it’s easy to have that conversation, but there are a number of principles that if you follow, you are more likely to be successful.”
The first of these is “openness, integrity and honesty.” “In previous history we haven’t been as frank as we might have been in terms of how things were done,” he admits.
Another important principle is not seeing patients and the public as passive recipients of care and information, but as people who have a right to be heard. Instead of trying to “break down” the privacy lobby, he argues, the NHS should be people in discussions and listening to their concerns.
The third principle is ‘keeping it real’; making sure that the conversation is based on real things that affect patients, such as the need to share information around end-of-life care.
Care and data
Despite these good intentions, the HSCIC has already run into considerable controversy, because of its role in the care.data programme being run by NHS England.
This will both expand the Hospital Episode Statistics and link them to other datasets, starting with information extracted from GP systems via the GP Extraction Service.
Concerns that GPs and patients would not be able to stop GPES being used to extract the datasets that NHS England demanded threatened to derail the project. However, an agreement was reached in April that patients should be able to lodge a “reasonable objection”.
The HSCIC is now piloting GPES with 1% of GP practices. Patients are being informed about the data extraction via posters and other materials at their surgery. Feedback from these pilots will be used to support practices to roll the programme out nationally.
NHS England’s business plan, ‘Putting Patients First’, set a target for 75% of GP practices to be providing a full extract to care.data by September 2013. But Dr Davies will only confirm it will be going live “this year.”
“We understand the sensitivities, and don’t want to rush it, but to learn lessons of how to get it implemented,” he says.
Despite the rocky start, he remains convinced that GPES will have a big, positive impact. “The GP record is the richest record that we have in our service and the most valuable asset we have got in understanding the experience of patients,” he points out.
“We as GPs have a moral duty to use that information to improve services, contribute to the public health agenda, and research and understand what good looks like.”
Dr Davies argues that most GPs have bought into this idea. He also believes there is growing enthusiasm for giving the public access to their records, and argues that this should reduce GPs’ workload by enabling them to share care responsibilities with their patients.
And then there are hospitals
Meantime, NHS England has just published a consultation on the expanded HES dataset that it wants to extract on a regular basis from hospital electronic patient record systems.
When it is linked with GP data, the dataset will become the Care Episode Statistics. These will be of great use to commissioners and researchers, but it looks as if the new service will require a significant investment in IT systems by trusts.
Implementing these will need to take account of the clinicians who will use them and, in effect, enter the data in the first place. Yet few hospital clinicians see this as part of their role at the moment.
Dr Davies acknowledges that clinicians are currently divorced from the data that describes their activity. Yet he argues that: “In a world where we are moving towards systematic measurement of clinical care and the quality of that care that is unsustainable.”
Having said that, he argues that the best way of getting good data is to make the data collection process useful and relevant to the person doing it. That means focusing on supporting them in their jobs.
“The data then falls out of that process and you use it for multiple purposes. That’s one of the reasons why GP IT has been so successful.”
The HSCIC is running the consultation with NHS England on how to achieve its “lofty ambitions” for much larger datasets to be extracted and linked on a regular basis.
“We have an information system that describes the NHS in terms of organisations and we will move to an information system that describes the NHS as a series of patient journeys,” Dr Davies says.
“It’s important to articulate the vision of where we are trying to get to, and it’s important for people to sign-up to that. Those debates will be pretty robust.”
Dr Mark Davies is one of the headline speakers at EHI Live 2013, where he will be discussing the impact of big data on healthcare. EHI Live 2013 is a two day conference and exhibition at the NEC in Birmingham on 5-6 November. This year, the conference is free for all visitors, and registration is open now.