General practice has led the way with electronic records and
computing. Most GPs have been using electronic records in some form or another
for the last 20 years. We are streets ahead of the hospital and community
services in this respect. What makes the data we have collected so valuable is
that the UK
Twenty years of Read coded data potentially holds information that will assist research; improve pathways of care for patients; reduce prescribing errors; reduce duplication between services and assist information gathering for disease outbreaks and epidemics.
For all these reasons lots of people want permission to
access to this information. I have already written about the summary care
record on a previous blog and this is possibly the best publicised scheme and
the easiest to see direct patient benefit in. Here limited data including drugs
and allergies will be shared with other health care providers such as district
nurses, accident and emergency and hospital outpatients. You can opt out of
sharing your data by telling us so that we can code your wishes on the clinical
system and prevent data-sharing.
In the course of the next few months it is proposed that
data will be shared in another scheme with the local community services
provided by Bromley Healthcare. Patients will have their consent to this sought
by the referrer on an individual basis. The district nurse, health visitor,
podiatrist, diabetic nurse or other clinician will then be able to view a read
only medical record with information limited to patient demographics; (possibly)
a summary medical history; medication; allergies and recent investigations. No
information will be extracted from the record and your GP will be able to view
a parallel record documenting the care that you have received from the
community services. This has not yet been finalised but once the details are
ironed out the benefit to patients care is easily appreciated.
So far so good I think, but now things get a little more
complicated.
This information is taken from the NHS choices website it is
not me talking:
“A modern information
system has been developed, which will make increased use of information from
medical records with the intention of improving health services. The system is
being delivered by the Health and Social Care Information Centre (HSCIC) and
NHS England on behalf of the NHS.
It is important that
the NHS can use this information to get a complete picture of what is happening
across health and social care and to plan services according to what works
best. The new system will provide joined-up information about the care received
from all of the different parts of the health service, including hospitals and
GP practices.
Your date of birth,
full postcode, NHS Number and gender rather than your name will be used to link
your records in a secure system, managed by the HSCIC. Once this information
has been linked a new record will be created. This new record will not contain
information that identifies you. The type of information shared, and how it is
shared, is controlled by law and strict confidentiality rules.
The new system will
also provide information that will enable the public to hold the NHS to account
and ensure that any unacceptable standards of care are identified as quickly as
possible. Information will help to:
•find more effective
ways of preventing, treating and managing illnesses
•guide local decisions
about changes that are needed to respond to the needs of local patients •support public health by anticipating risks of particular diseases and conditions, and help us to take action to prevent problems
•improve the public’s understanding of the outcomes of care, giving them confidence in health and care services
•guide decisions about how to manage NHS resources so that they can best support the treatment and management of illness for the benefit of patients”
The changes make it a legal obligation for GPs to share your
information. The proposed benefits of sharing identifiable data are to help to
plan and monitor effective patient services, especially where patients receive
care from several different organisations. This is not your direct care but the
management of the health of everyone.
There is a very clear and balanced explanation of what is
going on provided for patients by the National User Group affiliated our
computer systems supplier:
Please use the link below to read the official information
and decide whether you wish to opt in or out of this data.
If you do not wish your information to be used you
have only a few weeks to let the surgery know so that we can code it on your
medical records.
NHS England decided not to have a national publicity
campaign publicising this and have left it up to GPs to inform their patients.
For more information, please see here:
The legal situation is this NHS England have said that under
the Health and Social Care Act, practices have a statutory duty to share
information with the Health and Social Care Information Centre. However, GPs
also have a duty under the Data Protection Act (DPA) not to share confidential
patient information. The Information Commissioner's Office (ICO) have said that
if practices do not take ‘reasonable steps’ to make patients aware of the
changed, they leave themselves open to legal action from patients under the
DPA.
I would value comments and feedback, giving me your views on
all the aspects of data sharing by letter, email, comments on the blog or face
to face. If I have not explained this clearly please ask Dr Mustapha or myself
to talk it through when you see us.
