The challenge of making data and personal medical information available to individual patients and clinicians in a secure timely way is one that has been around for a long time. Failure to respond to this means that GPs are always asking, ‘what have you done to my patients?’, long after people have been discharged from hospital. Paper discharges can take a long time to reach local surgeries and may get lost or damaged in the process. When patients arrive in A&E and have to be admitted to a ward, we may have to rely on them remembering their drug regime and hopefully, not missing out any known allergies or drug interactions. It can be difficult to access their own GP’s notes which are not on a compatible digital database.
When the Imperial College Healthcare Charity, an independent charity which raise and managed funds for projects that improve patient healthcare, asked us to address this problem, we decided to make it a priority at the Trust. The result was the Care Information Exchange programme.
In the past, technology has not been mature enough to cope with the challenges of taking data from multiple sources and allowing it to be shared through a secure intranet system, so we have tended to silo information where it can’t easily be accessed or shared. That, fortunately, is changing. We decided to use G-Cloud Services, which is UK Public sector cloud provider and sign up with their Patients Know Best service. This is designed for use for all health and social care organisations across an entire region to provide integrated care and patient access to information.
We wanted it to be a collaborative process so we included CCGs, mental health workers, social care colleagues and patient groups within the governance committee and looked at how we could develop a solution. We were keen that this process should not be paternalistic in any way, so patients had to be at the heart of the process.
Now, we have started recruiting patients from Imperial College Healthcare NHS Trust and inputting their data with their consent including details of appointment times, prescriptions and medical notes. We have configured the software to include a consent engine at the beginning and end of the process which allows patients to decide where their medical records can go and who can see it. The key point is that this system should allow the right people in the right way to help manage an individual’s healthcare. Patients can make comments for consideration but they cannot modify any data. Medico-legally, we are obliged to maintain contemporaneous notes that accurately reflect the healthcare provider’s opinions and observations.
For this reason, there is also a controller who can decide when clinicians can share data in the patient’s interest. Access is password protected and information can only be seen by those who manage the data centre, patients and those professionals who are given the right to see certain things.
We have around 100 people enrolled in the pilot scheme but our aim is to roll it out across the Trust and North West London. Now we have to think about how we scale it up to be a really useful resource. Data inputting will be one challenge, but we also need to consider the needs of patients to be supported in the face of information that may have a serious impact on their health. For example, test results. It is one thing to give test results to renal patients who want to know they haemoglobin levels on a regular basis, but it is quite another to reveal histopathology results and radiology results to patients who may have a cancer diagnosis. For this reason, we have built in a delay of a month between clinical access and patient access when it comes to test results. This gives clinicians time to review results and work out how to best support the patient.
Whatever the fine tunings, the real value in what we are doing is engaging the patient in their own wellness and encouraging clinicians to interact with each other and share data in real time.