Digitalisation of the Rare Disease Patient Passport
The Challenge
1 in 17 people are affected by a rare disease. For these patients, care is often fragmented. Without a standard treatment plan, patients frequently see multiple specialists across different Trusts, and they are burdened with repeating their complex medical history to every new clinician they meet, sometimes in emergency situations or at every appointment.
The Solution
In collaboration with the Cambridge Rare Disease Network (CamRARE) and the Care Information Exchange (CIE), Imperial College Healthcare NHS Trust, has launched a digitised lifelong care plan in PKB named Rare Disease Patient Passport.
PKB care plans are comprehensive and patient-centred, allow patients, carers and clinical teams to capture structured and meaningful conversations about a person's care, editable by the patient, shareable to anyone involved in their care, and accessible via the NHS App.
The patient passport care plans are available for all patients attached to any organisation within North West London. The acute trusts are Imperial College Healthcare NHS Trust, Chelsea and Westminster Hospital NHS Foundation Trust, London North West University Healthcare NHS Trust, and The Hillingdon Hospitals NHS Foundation Trust.
Key Features of PKB Care Plan
The passport helps people with complex or multiple conditions quickly share key information about their health.
Shareable to all involved in the patient care, instructions to present the passport to medical staff ensure clinicians see the plan and key information about the patient within it. The care plan serves as a communication tool between specialists and primary care providers to ensure consistent monitoring and follow-up.
Includes critical sections for action plans, past medical history, clinical information, allergies, and important warning signs.
Captures communication preferences and accessibility needs, making it a personalised individual care plan.
Accessibility via the Web in PKB or via the NHS App.
See the full Patient Passport care plan below.
Connected Care
The patient passport care plan is hosted within the patient record team in PKB, providing a unique cross-border benefit.
The plan is visible across all four acute trusts: Imperial College Healthcare NHS Trust, Chelsea and Westminster Hospital NHS Foundation Trust, London North West University Healthcare NHS Trust, and The Hillingdon Hospitals NHS Foundation Trust.
Patients own the record for life, allowing them to present it to any clinician, anywhere, even if that clinician is unfamiliar with their specific rare condition.
Next Steps
Develop patient videos and sign-up posters to promote the passport in clinics as a part of the Imperial Comms Campaign.
Further Information
This health and care passport was developed in direct collaboration with the rare community and healthcare professionals. Learn more about the journey at CamRARE.