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Better Information Means Better Care: New NHS Info Sharing Arrangements

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Mark Platt
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Posts: 289
Better Information Means Better Care: New NHS Info Sharing Arrangements
Posted on: January 6 2014, 12:27 pm

Leaflets explaining how the NHS uses patient information will begin landing on the doormats of England’s 26.5 million households from today (Monday 6 January).

Over the next four weeks, every household in England will receive “Better Information Means Better Care”(attached), a leaflet explaining the benefits of sharing information about the care they have received. Sharing information helps ensure that the quality and safety of services is consistent across the country and can also highlight different diseases and conditions that may require more NHS investment.

Households in the North of England will receive their leaflets this week, with the rest of England to follow during January, as announced in October.

As explained in the leaflet, patients have the right to object to their data being used for purposes other than their direct care.  If patients wish to restrict their data being used then they should talk to their GP.
An information line has been set up for patients to call if they have any questions or concerns about how their data are used.  The number is 0300 456 3531.

One of the great strengths of the NHS is that we treat millions of patients every week. Modern data techniques allow us to analyse the characteristics of all those patients, their treatments, and experiences to help us improve the quality of care for all. Using this combined information, we can now obtain low-cost answers to questions about the quality of care that would have been difficult or impossible to answer only a few years ago.

Dr Imran Rafi, Chair of the Clinical Innovation and Research Centre at the Royal College of General Practitioners said: “I fully support this initiative. GPs understand the importance of sharing information appropriately both as part of delivering clinical care and for wider uses, such as research and for planning NHS services. It is important that patients understand how the NHS uses and shares their information, and that they feel they have been given a proper choice to participate. The spin-off is the potential for all NHS patients to benefit.

Dr Mark Davies, Medical Director at the Health and Social Care Information Centre, said: “The Health and Social Care Information Centre was set up as the legal ‘safe haven’ for protecting and managing patient information.  We want everyone to feel confident that their information is kept private and used in non-identifiable form to improve the quality of health and social care for everyone.  Equally important is that everyone knows that they have a choice and can raise an objection by simply talking to their GP.”

Dr Geraint Lewis, Chief Data Officer at NHS England, said: “The NHS has been collecting information like this from hospitals for decades but until now we’ve been missing information about the quality of care provided outside hospital. This initiative is about upgrading our information systems to get a more complete picture of the quality of care being delivered across all parts of the NHS and social care”

ENDS
Further information
How can data be practically used to improve services?
At a local level, GP data linked to hospital data are being used in a study that is examining variations in routes to diagnosis among patients with colorectal cancer in outer North East London. The project is exploring existing diagnostic pathways and aims to identify those pathways that result in the best outcomes for patients including the fewest avoidable healthcare episodes.

Using these data, North East London Cancer Network identified a marked variability in the timeliness and accessibility of diagnostic services for patients with colorectal symptoms. The colorectal pathway is highly complex, with patients being referred to diagnostic services from both the community and by many different secondary care services.
Colorectal cancer is the third most common cancer after breast cancer and lung cancer, and is a major cause of mortality. Patients’ chances of survival at five years are far higher when colorectal cancers are detected at an early stage (93%) versus those diagnosed late (6%); however, one quarter of colorectal cancer cases are diagnosed during emergency presentations to hospital.

Access to an individual-level, pseudonymised national dataset of linked GP and hospital data has allowed researchers to spend less time collecting and collating data and more time investigating patterns and trends, such as the time lags between diagnosis and treatment for a whole range of cancers and other diseases, together with any unwarranted variation in these lags across the country and between different patient groups.

Every patient wants to be confident that they are receiving the best possible care. However, poorly designed pathways of care tend to result in more fragmented, inefficient care, and poor patient experience. By linking GP and hospital data, analysts can help to define what constitutes optimal care along coordinated care pathways. This information can then be used by NHS commissioners to reduce the variability in current pathways of care, thereby helping to ensure equal access to the best treatment options across the country.

Notes to editors
1.    The information line number is 0300 456 3531 and open 8am – 8pm Monday to Friday and 9am – 3pm on Saturday. Patients will get through to a trained advisor, who can explain all aspects of data sharing, usage and patient rights.
2.    NHS England is the body which leads the NHS in England. Its main aim is to improve the health outcomes for people in England, and it sets the overall direction and priorities for the NHS as a whole.
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