Opting out of sharing medical records

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Opting out of sharing medical records

• Dr Simon Barton
• Primary Care Advisor (IMT)
• Cornwall

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Over the years various parts of the NHS have
chosen their own software for keeping electronic
records. This has resulted in duplication of
effort (e.g. patient names and addresses) and of
silos of information which neither connect nor
relate to one another.
Adastra Out-of-hours system
Exeter NHAIS
Patient Administration System (appointments)
Hospital Clinical Records
GP clinical system
Child health Call / recall
Picture Archiving Communication System (PACS)
Integrated Pathology System
Ambulance control
Radiology Information System
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Adastra Out-of-hours system
Exeter NHAIS
Patient Administration System (appointments)
Hospital Clinical Records
GP clinical system
The National Programme is now trying to connect
these systems via the new Spine
Child health Call / recall
Picture Archiving Communication System (PACS)
Integrated Pathology System
New systems to enhance patient care are also
being introduced
Ambulance control
Radiology Information System
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(No Transcript)
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Personal Demographic Service The personal
demographic service is a directory of names and
addresses of every patient in England. All the
other systems will connect to it, to obtain or
update the patients details. Updating a record
here will update all the other systems too.
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Personal Demographic Service It exists now and
has our records on it. The NHS needs such a
database to administer the NHS. For example,
the NHS needs to know which patient is registered
with which GP in order to pay the GP and to
direct clinical mail to the correct doctor.
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Personal Demographic Service It holds no
sensitive data such as medical records, ethnicity
or religion. It does hold NHS number, patient
name, date of birth, additional birth
information, date of death, death notification
status, gender, telecommunication contact
details, alternative contacts, preferred contact
times, preferred contact method, preferred
language, interpreter required, preferred written
communication format, nominated dispensing
contractors, no NHAIS posting, previous NHS
contact indicator, patient call-back consent
status, shared secret, registered GP, serial
change number, HealthSpace status, NHS Care
Record consent to share status, sensitive record
indicator.
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Personal Demographic Service There is no option
to opt out of having your data stored on the PDS
because it is required to administer the NHS. The
NHS has kept similar records for years, usually
in separate local records. However, it is
possible to flag your PDS record
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Flagging a PDS record Flagging a PDS record will
prevent other systems from accessing that
record. Choose and Book, GP to GP record transfer
and the Electronic Prescription Service will not
work for a patient with a flagged
record. Healthcare professionals will be unable
to access the patients most up to date address
and contact details held nationally.
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• Flagging a PDS record
• Cancer screening, GP registration and GP payments
  will not be affected by flagging.
• Records may be flagged if the record
• Is invalid
• Has a data quality problem (e.g. duplicate)
• Is sensitive (e.g. adoption)

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Flagging a PDS record Patients may opt to have
their record flagged. Healthcare Professional to
advise reassure Not to be undertaken
lightly Must be an informed decision Patient to
complete form Fax or email form Retain original
form in medical records Can undo with remove
flagged record form
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This form for flagging a PDS record can be
downloaded from here. The form for un-flagging a
PDS record can be downloaded from here.
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Other new national systems include
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ETP
GP2GP
Choose and Book for referring patients to
hospital and booking their appointments from home
or the surgery.
Electronic Transfer of Prescriptions for reducing
dispensing errors and enabling repeat dispensing
by pharmacists
GP2GP record transfer for moving electronic GP
records to a new practice
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Secondary Uses Service Data warehouse Hospital
activity data (including diagnostic procedure
codes)
Used for Local national management of
NHS Including Payment by results Practiced
based commissioning
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NHS Summary Care Record
Initially from General Practice records Details
may be added or updated each time someone uses
the NHS
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NHS Summary Care Record

• Used for urgent and emergency care by
• out-of-hours GP services
• Accident departments
• Minor Injury units
• Ambulance crews
• NHS staff treating patient when out of usual area
  e.g. on holiday

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NHS Summary Care Record

• Can only be accessed by authorised users
• Clinicians
• with a smartcard and PIN
• who have a legitimate relationship with the
  patient
• Confidentiality and security arrangements set out
  in the Care Record Guarantee

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Patients can view their own summary care record
via www.healthspace.nhs.uk Access requires a
special card, a username and a PIN A patient
could use this to show their summary care record
to any clinician treating them anywhere in the
world
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• Initially
• current medication, repeat and acute
• adverse drug reactions
• allergies to drugs.
• Expected to grow to include
• major diagnoses
• discharge summaries
• clinic letters
• latest pathology results.

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• When Cornwall implements the summary care record
  there will be
• extensive publicity on local radio and TV
• a letter sent to each patient
• a telephone helpline available
• The opt-out process will be clearly described at
  the time
• Patients will have 16 weeks to opt out before
  their summary is uploaded

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A patient may opt out after a summary record has
been uploaded. However, such a record will then
be hidden, not deleted, because clinical
decisions may have been made on those data which
may need to be defended in court.
For now, patients expressing dissent should have
Read code 93C3. added to their record. Later they
can be invited for a formal interview to
establish informed dissent.
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The separate medical records held by different
organisations are called detailed care
records. The organisation has a right to decide
whether to keep paper or electronic records. Each
organisation has a duty to maintain clinical
records. No patient has a right to prevent these
records being kept.
Adastra Out-of-hours system
Hospital Clinical Records
Patients can dictate how or whether those
detailed records are shared.
GP clinical system
Child health Call / recall
Picture Archiving Communication System (PACS)
Integrated Pathology System
Radiology Information System
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Normally medical information is shared with other
staff in order to care for a patient. For
example a letter is sent to a consultant when a
patient is referred to hospital. Consent is
implied each time confidential information is
shared in this way. It is good practice to
explain each time so the patient has an
opportunity to opt out or object to data sharing.
Adastra Out-of-hours system
Hospital Clinical Records
Patients can dictate how or whether those
detailed records are shared.
GP clinical system
Child health Call / recall
Picture Archiving Communication System (PACS)
Integrated Pathology System
Radiology Information System
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X-rays and scans are now recorded digitally
rather than on X-ray film, and stored in
PACS. Although they are detailed records
maintained by the trust which captured the image,
they are shared more widely within Cornwall. GPs,
the out-of-hours GP service and Minor Injury Unit
staff can view anyones X-ray or scan via
webPACS, and this has huge benefits in terms of
patient care.
Posters are displayed everywhere images are
captured and stored in PACS, giving the patient
an opportunity to discuss confidentiality and
record sharing.
Picture Archiving Communication System (PACS)
The opt-out solution is to offer to capture the
image and store it in PACS but under a pseudonym
instead of the patients real name, address and
NHS number. That pseudonym is known to the
patient and stored in the detailed medical record.
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X
X
X
X

• Patients may NOT opt out of medical record
  keeping, but may opt out of medical record
  sharing.
• When Cornwall implements the Summary Care Record
  patients will be told how they may opt out.
• Flagging a Personal Demographic Service record
  will disable other systems for that patient.
• Patients may opt out of sharing images stored in
  PACS by using a pseudonym.
• Opting out must be informed dissent after an
  interview with a healthcare professional

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Resources and more information www.nhscarerecords
.nhs.uk Guidance for GPs Personal Demographic
Service a guide for General Practice Guidance for
NHS staff The Care Record Guarantee Publications
including videos and patient leaflets
. Dr Simon Barton Primary
Care Advisor (IMT), Cornwall. Simon.barton_at_cornwa
ll.nhs.uk 31st January 2008