A ten-year strategy to change how health and social care information is managed

Posted on May 21, 2012 by

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A new ten-year strategy for changing how the NHS manages information has been published today. This includes access to information for research. The strategy includes an overview of why and how the government plans to change the way data is managed and outlines how they plan to do it. This includes mention of:

I’ve picked out some of the specific areas relating to research below.

Background

When the reforms of the NHS were launched with a white paper back in 2010, the government also announced their plan to update the way information is managed across the NHS. They held a consultation on their planned Information Revolution. 

As access to data is really valuable for research, AMRC responded outlining the potential of data for research if it can be accessed safely and securely and emphasising the need to engage with all of us using the NHS to understand how our data will be used. This response also includes the results of some really interesting work exploring attitudes and awareness amongst general practitioners (GPs) and patients about the use of patient data in research (annex C).

The power of information: putting all of us in control of the health and care information we need is the next step in the development of the information strategy for the NHS.

What does the information strategy say?

The strategy covers the management of information across public health, social care and healthcare in England. It outlines the government’s ambitions to change the way information is managed to support health and care services. This includes improving safe and secure access to data for research.

I’ve gone through and picked out the interesting bits specifically for research.

Among the ambitions of this strategy is creating a system where:

Our electronic care records progressively become the source for core information
used to improve our care, improve services and to inform research, etc. – reducing
bureaucratic data collections and enabling us to measure quality;

Chapter 1 – outlines the case for changing how the NHS manages information

Chapter 2 – looks at the information involved

Chapter 3 – explores how the information can be connected up and used – including for research

This states an ambition to ensure that,

the research and life sciences community will have access to a greater wealth of information to help drive improvements in health and care.

Here the strategy recognises the key role of research in improving healthcare, the value of data for research and the need to develop a system where researchers can access data safely and securely:

3.28 Research has always been and remains an essential aspect of the health and care  quality agenda. The day-to-day information produced within the NHS alone is of  vital importance to researchers as they seek to develop new, better, more reliable and  effective treatments, diagnostics, procedures, medical equipment, devices and ways of delivering our care. The data generated within our care records helps researchers identify potential areas of research and, in very strictly controlled situations, identify patients that could help with the research. Without research and without our participation, many of the treatments now available to us would not have been possible.

3.29 There is also enormous untapped potential from joining up information at the
population level. Our individual information, when combined securely at a population level, gives researchers the opportunity to have greater confidence in the accuracy and outcome of their research. This is essential if new treatments are to be brought into everyday use quickly and efficiently to improve our health and our care.

Chapter 4 – explores different ways that information may be accessed in a new system

Chapter 5 – looks at the organisational and culture change involved in managing information differently

This includes a summary of what the organisational change associated with the ‘information system’ should mean for each of the people involved. For researchers it promises:

as a researcher or academic – I will have access to a greater wealth of linked data – through the Clinical Practice Research Datalink service and supported by the Health and Social Care Information Centre – to help inform my work, e.g. research to develop new understanding of health and care issues, to improve the efficiency or effectiveness of services, to develop new treatments, etc.

This chapter also outlines plans to review how data is shared – the independent review of the balance between protecting patient information and its sharing, to improve patient care being led by Fiona Caldicott which is underway:

5.38 As well as recognising the importance of providing safeguards around access to our records online, the NHS Future Forum received a clear message that not sharing information has the potential to do more harm than sharing it. There is a need for greater clarity over the circumstances when it is in our interest for our personal health and care information to be shared. Typically this means allowing clinicians and other professionals involved in our care to access our records, to ensure that we get care and treatment that is safe and appropriate to our needs. In practice, most of us would want and expect this to happen routinely, but we need to be assured that only those involved in our care will be able to access our records unless we give our consent for our personal information to be used for other purposes not related to our personal care, such as surveillance or research.

5.39 The data held in our health and care records is a valuable source of information, which can be used for the benefit of wider society, as well as in our personal care. So, we should move towards allowing our data to be more readily used for the wider benefit of society. The NHS Future Forum proposes a ‘deal’ or ‘contract’ along the lines below:
• “You have a right to access your data and a right to withhold consent to its being shared. You have a corresponding responsibility to let us use your data in the interests of your own care and of improving the service for others.
• We have a right to use your data, and a corresponding responsibility to tell you exactly what we plan to do with it and, when sharing it, to take all reasonable steps to protect your confidentiality.”

5.40 Bringing these themes together, the Government has commissioned a review of the current information governance rules and their application, to ensure that there is an appropriate balance between the protection of confidential and identifiable information within our health and care records and the use and sharing of information to improve the quality and safety of our own care and for the benefit of wider society. This independent review will by led by Dame Fiona Caldicott and will report later in the year.

And the consultation on changes to the NHS constitution announced in the Life Sciences Strategy back in December that will ask NHS users if they want researchers to be able to access their health records unless they expressly choose to opt out. This is expected in the autumn. The wording here suggests that the Caldicott review will report ahead of this and may inform the proposals that are put forward for consultation:

5.41 The Government has also committed to consulting on an amendment to the NHS Constitution. Following on from the independent review of information governance, this will make more explicit proposals for the ‘consent deal’ – and will ensure that all interested parties have a chance to express their views on how they would like consent for the sharing of personal information to be sought and recorded.

Chapter 5 also outlines how the government plan to make data available to researchers in industry and academia. This includes publishing and linking data, and access through a  secure data linkage service that will be established by the Health and Social Care information Centre and the Clinical Practice Research Datalink which is already up and running, coordinated by MHRA. This linked data will be a very powerful tool for research.

5.52 Government will work with industry and academia, identifying specified data sets for open publication and linkage as well as championing emerging data-based
innovations in health and life sciences. Over the longer term, further consideration
will need to be given as to how information can be linked to wider services. For
example, an underlying factor of an asthmatic’s poor health could be poor housing.
An improvement in their accommodation could have a far greater impact in terms
of improving their health than simply treating their symptoms. Or links across to
the criminal justice system could reveal underlying patterns of behaviour that could support an individual trying to tackle their drug dependence.

5.53 The Health and Social Care Information Centre’s secure data linkage service and the complementary new secure data service, the Clinical Practice Research Datalink (CPRD), will be available to health and care organisations, managers, commissioners, public health specialists, researchers and industry and others. The ability to draw upon a wealth of linked, then anonymised, data from these invaluable services to improve health and care – when coupled with other resources such as the UK Biobank – will serve to reinforce this country’s reputation as a global centre for health and care data and research.

Chapter 6 – sums up the next steps

The Department of Health plan to lead action by setting common standards and establishing some systems, but they are planning a fair amount of change will be made as the strategy is implemented at a local level

Annex A at page 90 gives an overview of all the actions the department of health have committed to in the strategy, dividing up those that will be achieved centrally and locally. For research these include two central actions:

The Department of Health has already announced an independent review of information governance, led by Dame Fiona Caldicott.

The Health and Social Care Information Centre will provide a secure data linkage service, complemented by the research data linkage service. This will be in place by September 2012.

Annex B states the governments commitment to open data which includes a section on “protecting your confidentiality’ outlining the need to balance the risks and benefits of sharing personal health data. This includes a recognition that release of data needs to be reviewed on a case-by-case basis considering:

  • the purpose and benefits of the data;
  • data protection and related issues, consulting with the Information Commissioner where necessary;
  • confidentiality and the potential for ‘jigsaw’ identification from data;
  • the format and specific level of data that should be released;
  • the costs of collecting, releasing or linking the data and who should pay;
  • any commercial implications or impacts on current information providers; and
  • the impact on the broader transparency agenda, for example will the data promote a marketplace of intermediaries to present the data for specific audience?

Annex C confirms that the Health Research Authority plays the leadership role in regulating the use of information to support research.

What next?

As referred to in the strategy, the Caldicott review is underway and we are expecting a consultation on the NHS constitution in the autumn – just last week AMRC and Wellcome held a joint workshop to explore the role charities can play in raising public awareness about these changes to how their data is shared and what they might mean so patient views can be heard in the consultation. At the same time, the European data protection framework is being revised and will have implications on access to data for research –  we have supported a joint statement outlining some of the issues with the proposed regulation.

With the huge value of data for medical research and such a lot of activity in this area at present, the All Party Parliamentary Group on Medical Research’s summer reception this July is focusing on data and how it is accessed by researchers, including emphasising the importance of developing a safe and secure system to enable research to go ahead while respecting patient confidentiality,   Parliamentarians will have an opportunity to meet researchers and see some of the different ways they are using data to develop and take up new therapies. It will also allow us to explore how barriers can be overcome to enable us to share information safely and securely.

Posted in: Policy