The North West London Care Information Exchange (CIE ) provides patients – and the health and social care professionals involved in their care – with secure online access to their medical records.
Initially funded by Imperial Health Charity, the programme is led by the eight CCGs which form the North West London Collaboration of Clinical Commissioning Groups. The portal solution is being rolled out initially to patients receiving treatment for particular conditions, including Rheumatology, Renal and Oncology. It uses Patients Know Best technology.
“We are one of the few areas going down the route of giving patients access to their records first. In many ways, local circumstances have dictated this direction – the fact that it has taken us so long to reach a solution for integrating with SystmOne, for example – but it also makes sense to get patients involved from the start. This is about improving their care, after all, and they have a big part to play in driving changes in the health & care system.
We targeted a number of clinical specialties to get CIE off the ground, and invited patients receiving care within those services to start accessing their records. It has proven to be especially useful for patients who interact frequently with a service, and who want to know the latest status of their care, view test results on a regular basis, or indeed provide input. People with long term conditions are becoming increasingly expert at managing their own care and are looking for tools to help them work more effectively with the professionals involved.”
Steve Janering, Project Manager, CIE Programme
- The Care Information Exchange (CIE) is a patient – centric portal solution based on Patients Know Best technology.
- The programme began as an Imperial College Healthcare NHS Trust initiative, with funding from Imperial Health Charity. It now involves health and social care organisations from across North West London, with ownership having shifted to the North West London Collaboration of Clinical Commissioning Groups.
- CIE currently comprises data from three acute hospitals, a community provider, a mental health Trust, and the EMIS GP practices which fall under Hillingdon CCG. The clinical specialties covered are Neuro – oncology, Early Intervention in Psychosis, Rheumatology, Diabetes, Renal, HIV, Colposcopy, Cancer Oncology, and Interstitial Lung Disease and several others.
- Work is underway to extend CIE to two further acute hospitals and a mental health Trust, plus other community services and those GPs using SystmOne (i.e. the majority of GPs in the area), throughout 2018. This ongoing rollout is scheduled to be completed by early 2019.
- To date, clinicians within the clinical specialties have been responsible for inviting patients to join CIE, however a campaign to recruit a broader spectrum of patients is planned.
- Central Repository Model Patients logging onto the portal are able to see information about their health and care such as test results, clinic letters, appointments, and medication, drawn from a variety of sources. They can contribute information to the record themselves, as well as communicate with their care provider through secure messaging.
- If a patient gives consent, professionals involved in their care can access that patient’s record in CIE . Patients manage their information sharing preferences from within the portal. Both patients and clinicians have access to the same set of data, but with a slightly different presentation.
The CIE supports individual patient care by allowing health and care professionals and patients to interact in new ways, supported by a range of features, including:
- Treatment and care plans.
- Results – some of which have an associated delay before being released to the patient, to allow the clinician time to contact them about it.
- Apps – links to healthcare or fitness trackers, e . g . Fitbits
- Patient surveys.
- Collaboration – including the ability to send messages or join a video conference with a care professional. There are also alerts for clinicians linked to patient symptom tracking.
- Knowledge – sharing – there is a patient library where patients and care professionals can add links to useful resources including leaflets, audio files and videos. Patients can also access signposts to local services.
- Care plans are created in the patient’s shared record in CIE and are used by different clinicians to collectively manage the care of the patient. The care plans summarise the patient’s care to date and set out goals and actions. A major part of the exercise has been to refine and clarify the definition of a care plan across organisations.
- Some of the information entered into CIE is then available to other systems through a REST API . For example, special patient notes entered into a care plan is transferred to NHS 111 users in Adastra, providing continuity of care.
- A parallel programme, Whole Systems Integrated Care (WSIC ), has been running in North West London. This brings together data from numerous sources and provides dashboards and analytics . There is an asso ciated Digital Information Sharing Agreement covering 346 providers and more than 1.3m patients.
- Unlike the data in CIE, the data driving the tools developed by the WSIC programme is not currently real time . It uses SUS feeds and GP data extracts.
- Integration between CIE and the WSIC dashboards is planned for Q 2 of 2018.