It’s time to hand over the keys to the GP record
Dr Jonathan Inglesfield argues GPs need to be more willing to share patient data
It’s not easy to change the habit of a professional lifetime.
Confidentiality has been embedded in us since medical school and consolidated through years of clinical practice. The computerised clinical record is the physical manifestation of this confidentiality. Unsurprisingly we are reluctant to risk betraying the trust of our patients. We keep the data control keys well-guarded in our surgeries.
The problem is that we can’t carry on like this. We need to change and accept the need to share access. If we don’t, not only will patients have more fragmented care but our lives as clinicians will be harder.
Growing GP practice sizes, the loss of 24-hour responsibility and the proliferation of allied health professionals all push towards more fragmented care. Walk-in centres, minor injury and accident and emergency units have their part to play. Specialist referrals are now commonplace - it is not unusual to make several during a morning surgery.
Do we ask the question, ‘Are we sharing enough?’ as often as we ask the question, ‘Am I allowed to share?’
The longitudinal primary care record remains the definitive description of the patient’s health journey. Through this bird’s-eye view we observe our patients as they flow through healthcare settings. We know when they receive appropriate or inappropriate care. We can see when they have an arguably unnecessary scan or a tertiary referral of dubious benefit. We stop the newly recommended drug that we know the patient failed to tolerate six months ago because our GP record reminds us.
As data controllers, GPs are able to enter into information sharing agreements with providers who are able, at speed and with moderate cost, to place primary-care systems within their own facilities. Locally we now have an EMIS terminal within our acute hospital accident and emergency department capable of viewing the entire primary care record of 20 of our 21 practices. The power of this tool in a hospital setting is immense – for the first time hospital clinicians offering emergency care are privy to the longitudinal view of the patient journey. Episodic care starts to become longitudinal.
There is another reason for sharing data. Consider this - you come across a foreign holiday and wish to invite a friend. Do you take note of the details, write them down, post them to your friend and ask them to meet with you in a few weeks, following which you ask them to write back with the response? That is the equivalent of how we seek clinical advice. We now have the ability to manage our patients in real-time with specialist colleagues, simply done with a GP terminal within the hospital and an electronic request for advice. No need for the patient to travel. No need for lengthy letters.
The 2013 Caldicott Review requires GPs as data controllers to place equal emphasis on the duty of sharing and the duty of confidentiality. Do we ask the question, ‘Are we sharing enough?’ as often as we ask the question, ‘Am I allowed to share?’
Of course safeguards are needed - robust data sharing agreements, a well-publicised fair processing notice and audits to ensure appropriate access. All this can be put in place quickly. We also need to refine how and what we record. Highly personal details of lives may become increasingly inappropriate in the record, but that applies as much to sharing within a large group practice as it does between healthcare providers. Such details once recorded can rarely be kept secret between an individual clinician and the patient, our patients move between practices and complete data subject access requests. Medicolegal issues apart, the record should refer to detailed intimacies by theme with the trusted lifelong GP remembering the rest.
We need to see the default position as a requirement to share, balanced with assurance around safeguards, rather than one of declining to share because of confidentiality concerns. If we don’t share our patients will receive even more fragmented care, and our lives will be more difficult as we stay within ‘refer for opinion’ rather than shared care decision making.
Dr Jonathan Inglesfield is Medical Director of Guildford and Waverley CCG, lead of the CCG’s Integrated Care Programme and a GP in Surrey