Scribd
Upload
151 views

Caredata OpenHouse Discussion Points Final

Julie works for a health analytics charity developing a map showing NHS care performance across England. Alan, an NHS manager in Manchester, sees data showing local asthma care needs improvement. Brenda, a university researcher, can now study long-term patient outcomes like GP visits after using linked hospital and GP data.

Uploaded by

NHSOpenhouse
Copyright
© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as PDF, TXT or read online on Scribd
151 views

Caredata OpenHouse Discussion Points Final

Julie works for a health analytics charity developing a map showing NHS care performance across England. Alan, an NHS manager in Manchester, sees data showing local asthma care needs improvement. Brenda, a university researcher, can now study long-term patient outcomes like GP visits after using linked hospital and GP data.

Uploaded by

NHSOpenhouse
Copyright
© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as PDF, TXT or read online on Scribd
You are on page 1/ 4

Page 1

An expert working for a health analytics charity



Julie works for a health analytics charity. She is working on a project to build a
map of England showing where the best NHS care is provided across the country.
Once developed, this map will be available to the public so everyone can see how
their local services are performing. Even though the charity is working outside the
NHS, Julie has access to data to develop the tool because the aim of the project is
to improve NHS care for everyone.

An NHS manager

Alan is a local NHS manager in Manchester and his job is to plan NHS services for
local people. By looking at the information, gathered as part of the care.data
programme, he sees that in his area, a higher proportion of asthmatic patients are
needing emergency hospital care compared to the national average. He decides to
work with clinicians to look at the care being provided to asthmatic patients in
Manchester to see how it differs from care being provided elsewhere.
Researcher

Brenda is a researcher working in a
university. She has been researching
what happens to patients who have
had a hip replacement. Before
care.data, Brenda could only see
whether a patient returned to hospital
with complications. Because
care.data links hospital and GP data,
Brenda can now look at what post-
operative care was provided when
patients left hospital after surgery; for
example, how many times they visited
they visited their GP in the short and
long term. This research helps inform
what the best package of care is for
patients with hip replacements, which
will improve care for all patients.


Page 2


The care.data programme is intended to benefit patients by:
helping ensure the highest standards of care and clinical safety are consistently measured and met throughout
the NHS and to alert us if standards drop, allowing us to take prompt action to improve patient safety
ensuring the needs of patients, especially those with long term conditions, are met by helping us understand
what happens to people cared for outside the hospital environment
providing us with the vital information needed to assist and support research into new medicines, and the better
treatment of disease.




Care.data how might it help reduce variations in cancer treatment and care?

Mavis is 80 and has been diagnosed with lung cancer. She has seen a specialist who has recommended medication that will
reduce the size of the tumour and then hopefully prevent any growth and spread to other areas of the body. Mavis is
otherwise fit and well for her age and still cycles when running errands around the village. Mavis has done some research on
the internet with her daughter and believes she could benefit from surgery to remove the tumour. She believes that the
reason she has not been offered this is due to her age.

Joined-up data from different healthcare settings can help identify where certain groups of people may be receiving poorer
care than others. This may be because of factors such as age, where they live, or what other diseases and conditions they
have. Variation exists in access to treatments, such as surgery for lung cancer. The likelihood of receiving surgery for lung
cancer varies significantly between different areas of England. There is also evidence that some older people with cancer
may not be receiving treatment because of their age.

Through the Cancer Registry, we are fortunate to have access to data on cancer, which allows research such as this to be
carried out. Unfortunately, we do not have access to information about many other diseases, such as diabetes. Care.data
would enable access to information about the whole healthcare system, which would provide a better understanding of other
illnesses and long term conditions. This would tell us what treatment works well, what doesnt and ultimately improve the
healthcare that patients receive.



Page 3




There is already a strong legal framework protecting the confidential and identifiable data held in peoples health and care
records not just the information held by HSCIC, but more generally.
The Government has introduced new measures relating to data security, including changes to the law within the Care Act.
This new law will ensure that an independent group of experts will advise and scrutinise all requests to release data
where there is a risk, however small, that an individual could be re-identified from the data.
There will be tougher penalties for those who misuse data.
If a patient objects, then their identifiable data will not flow to the HSCIC from their GP practice, and this commitment is
protected in law.
The HSCIC is committed to transparency and being open with citizens about who has access to their data and why. A
register was published in April this year and is being updated quarterly. It lists each organisation that receives data, the
type of data released, the legal basis for the release, and the purpose for which the data was provided. The register is
intended to encourage public scrutiny of the HSCICs decisions. The register is available via the HSCIC website at:
www.hscic.gov.uk/dataregister.
The HSCIC is working to develop secure data laboratory technology to enable researchers and other analysts to study
the data it holds, without the data leaving the secure environment of the HSCIC.
The HSCIC currently investigates any issues that arise and has recently reminded data recipients of their legal obligations
around the use of data. The HSCIC recognises the need for an ongoing, proactive audit process and is currently
developing a new audit function.




Page 4


How can we best reach groups that may be excluded by mainstream communication
approaches?

How can we communicate effectively but ensure we do so in a cost-effective way?

Which partners might we work with?

You might also like