Until relatively recently, data recorded in GP systems have not been directly accessible by other organisations. Data have previously been shared via specific clinical communications for example, by sending a referral letter.
A number of system suppliers have developed systems which allow healthcare professionals across different organisations to access directly the detailed information recorded during patient consultations.
The following principles are intended to support GP practices that are considering implementing shared record systems. They are high level principles, which the BMA believes represent best practice in terms of allowing records to be shared in order to facilitate patient care whilst maintaining high standards of confidentiality. All system suppliers should aspire to meet these standards.
Making patients aware of new arrangements
1. Patients must be made aware, in advance, of the new arrangements for managing their
health information. This may involve a discussion with the patient during a consultation,
an information leaflet being sent to patients and being made available in the practice or
other forms of communication with the public.
Communications should include posters in
the practice, information on the practice website, or use of local media to raise awareness.
Practices may wish to consult with their patient participation group. Doctors should have
confidence that these methods of communication have been effective.
Different suppliers of shared records stream/store data in different ways. For GP
practices using EMIS Web and SystmOne, for example, patient records are held in a data
centre. Patients cannot opt out of having their data held in the data centre; if a practice
agrees to stream data this applies to all records.
Having patient records stored in the
data centre does not automatically mean that other organisations can view them; by
default organisations should only be able to see their own records even though they are
held in the same data centre.
With Vision 360, a copy of the GP practice records is streamed to a database for
sharing. The default is to stream patient records, however, individual patients can opt out of their data being streamed by using Read Codes.
If a patient opts out, their data is not
streamed into Vision 360, but will continue to reside within the Vision dataset at the
practice, which could be held on a server at the practice or hosted in a datacentre.
Establishing the organisations involved in the sharing
2. As data controllers, GPs should make decisions about which organisations access their
patient records. GP practices should consider which organisations in the local health
community are providing care to their patients and whether information sharing would
improve the delivery of care, and is necessary for direct care.
It is good practice to establish formal sharing agreements between the different
organisations involved in sharing. Practices working collaboratively should consider
establishing formal arrangements between each practice to ensure a clearly documented
understanding of how merged records should be managed.
The Department of Health (DH)
guidance on shared records explains that participating organisations will become joint data controllers under the General Data Protection Regulation for the information within the
shared environment. We recommend that practices complete the checklist within the DH
guidance of key issues for inclusion in local agreements.
With SystmOne, this involves accepting or rejecting a ‘share request’ for a particular
patient from another organisation, such as the local care home. With EMISweb and
Vision 360 this involves establishing a local sharing agreement with the organisation,
which specifies the type of information to be shared e.g. demographics, consultations,
medication and the job roles which can view the shared data.
Options for restricting sharing and tailoring information
3. If patients are concerned about shared records systems then options for restricting
sharing should be explained:
- Patients must be able to apply a blanket dissent i.e. I do not want my record to be shared
with other organisations.
- If patients decide to have a shared record they should be able to make decisions about
which organisations can access their records.
- If patients decide to have a shared record, their explicit consent to view must be obtained
e.g. where a practice other than the patient’s registered practice is seeking to view the
record for the delivery of out-of-hours care.
- Patients must be able to mark specific items as sensitive/private which means they will
not be visible in another care setting. Ideally systems should include the flexibility to allow
patients to withhold particular items from specific organisations.
At present, the various systems provide the ability to withhold sensitive items in
different ways. With some systems, if a patient withholds a sensitive item they withhold
it from all organisations but with other systems there is greater granularity around who
and which organisations can access the sensitive items.
4. In exceptional circumstances, for example if the patient is unconscious and immediate
access to the record is necessary, it may be appropriate to access the record without
consent to view. Healthcare professionals must indicate on the system a reason for this.
An override may not be possible if a patient has dissented from a shared record.
As well as opting in or out from streaming as described in the first box, if a patient agrees
to a shared record with Vision 360, they can specify which organisations can view their
record by giving their consent to view at the point of care.
Only the information that
is set out in the sharing agreements, described in the second box, is shared; an OOH
GP may have access to more enriched information from the GP record compared to a
diabetes nurse. If the patient opts out of streaming then their record is not available.
With EMISweb, the patient has two options: either to share or not to share across
organisational boundaries. If at this point they dissent, their information is not
accessible by other organisations.
If a patient selects the ‘share’ option then they can
tailor which organisation can see their records by giving or withholding their consent to view at the point of care or by applying a confidentiality policy. In addition, as with
Vision 360, the information available is set out in the sharing agreement and tailored to
the particular healthcare professional.
A share in/share out model is used for SystmOne. Taking the example of a patient being
cared for by a GP practice, a community nurse and health visitor, at the first appointment
with the community nurse the patient will be asked for their consent for the community
nurse to view information recorded in other healthcare settings i.e. the GP record and
the health visitor record. This is called ‘share in’.
The community nurse will also ask the patient whether they are happy for the
community nurse record to be shared with other organisations; this is called ‘share
out’. Patients must understand that it is the whole record from that care setting which
will be visible if they give their explicit consent to ‘share out’.
If the patient dissents, the
community nurse record will not be made available to any other organisation unless the
patient changes their mind. Similarly, if the patient had dissented to a ‘share out’ at the
GP practice, the GP record would not be listed for the community nurse to access it.
5. Healthcare professionals should only view the information relevant to their care setting,
unless the patient has given their explicit consent for the full record to be viewed. In the
BMA’s view, it is unnecessary for a physiotherapist treating ligament damage to access the
entire medical history, for example.
Traditional referrals result in relevant information being
shared with the treating clinician. This exchange occurs under implied consent. Systems that
disclose the entire patient record to the treating clinician require explicit consent.
6. Healthcare teams should only be able to view the records of patients with whom they have
a direct clinical relationship. This means that the patient must be registered on the system
of the organisation which wishes to view their record, for example as a result of referral. It
should not be possible for one organisation to view all of the records of another organisation.
It would be inappropriate for all patient records from a GP practice to be accessible at a
local hospital because many of these patients will not be receiving care at the hospital
so there will be no legitimate relationship.
It is appropriate for GPs to view information
recorded by other healthcare professionals when caring for their patients, unless the patient
dissents. There may, however, be exceptions for example, some sexual health information.
Appropriate role-based access controls should be in place to control access to patient data.
7. Systems must be designed to include audit trails. Ideally, these should allow patients to
view details of who has accessed and edited their records and when. If a record is accessed
without the consent of the patient there must be a mechanism to notify a trusted third party
such as a privacy officer.
GP practices should ensure that audit logs are reviewed so that any
inappropriate access can be identified and acted on.
Principles for sharing local electronic patient records for direct patient care (PDF)