Case Study: Empowering people living with a rare disease
Background
The Challenge
- Paroxysmal noctural hemoglobinuria (PNH) is an ultra-rare condition in which red blood cells break apart prematurely.
- Multiple challenges are inherent in managing and supporting people living with PNH.
- Treatment requires patients to transition from hospital-based IV infusion to self-administered infusions at home, posing adherence and other challenges.
Our Behaviour Change Approach
- A patient support ecosystem was extensively co-designed with and for the PNH community using behavioural science approaches.
- By engaging with this community to understand how to ensure the best start to at-home treatment, we learnt that patients needed to build confidence, competence, and capability for successful self-administration and required additional psychosocial support throughout their treatment journey.
The Solution
A personalised support ecosystem was created by identifying and addressing patient, carer, and healthcare professionals' unmet needs across the treatment journey.
Aimed at optimising outcomes and treatment adherence, the programme included:
- Comprehensive onboarding to treatment self-administration
- Support for establishing a treatment routine and managing access to medication
- Psychosocial support and ongoing nurse check-ins throughout the programme
The support ecosystem reduced treatment burden for patients by:
- Addressing unmet needs, challenges, and barriers across both patients and healthcare professionals, including logistical and administrative requirements
- Providing equity in access and individualised psychosocial support
The Impact
- 100% of patients were trained and then assessed as confident, competent, and capable to self-manage their infusions after only one training session, reducing demand and burden on the hospital system.
- A new community pharmacy access model reduced travel burden for patients.
- The programme was highly commended in the category of “Best patient or customer support” at the 2023 PRIME Awards.
The programme nurse came in and talked me through the process. It’s great because you feel like there's a support team, that there are nurses who really take their time to show you everything, to explain everything, and to be there for any questions or concerns. In this day and age, everything is rushed, and doctors don’t always have the time to talk about everything. It feels really reassuring.
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