Building digital health tools that genuinely help people is hard. Doing it for people managing a chronic condition, with all the uncertainty and day-to-day demands it entails, is harder still. That is why, at ProtoFlex, co-design with our users is not a box we tick. It is central to how we work.
By co-design, we mean something specific: people with lived experience working alongside us as partners in shaping the product. Not consulted once, not surveyed, not asked to react to finished designs. They influence what gets built, what gets prioritised, and what gets rejected.
The People in the Room
Over the past few months, we have been leading a structured programme of co-design workshops on sickle cell disease. Participants include sickle cell patients from a range of backgrounds and life circumstances, as well as a primary care professional to give a clinical perspective on how SCD treatment fits within the wider healthcare system. The insights we get are not from a single type of patient or a self-selecting group, but from a range of people whose relationship with the condition, and with healthcare, differs in meaningful ways.
Two things they share are knowing first-hand what it feels like to manage a long-term condition, and having encountered digital tools intended to be helpful but which often turn out to be anything but.
Not Another Generic Portal
Patient portals are rarely designed with any specific patient in mind. For people managing complex, lifelong conditions, being forced to use a clunky system isn't just inconvenient but genuinely disruptive to their ability to manage their care.
ProtoFlex wants to offer an alternative: a patient portal that understands the specific context of living with sickle cell and is designed around what that actually requires.
Better engagement with the care team
- Structured, longitudinal patient-reported data that clinicians can actually use
- Tools to support shared decision-making based on a patient's own history
- Less the friction between patients and the people looking after them
Personal tools for self-management
- A pain and crisis diary so patients can track patterns over time and share meaningful data at appointments
- Context-aware signposting that provides relevant help based on where the patient is the portal, not a generic FAQ
- Condition-specific information and guidance that makes sense in the moment
These are not features we arrived at independently. They came directly from the workshops — from people describing what they actually need, and why.
Feedback as an On-Going Process
Co-designers can follow their influence on our work in real-time. Their input shapes and re-shapes our roadmap from one workshop to the next, with participants encouraged to challenge any decision that does not reflect their own experience. So far, we have added platform capabilities, diary view, and data card visualisation, all in direct response to patient feedback. Centring patient voices in this way is what ensures that at ProtoFlex, co-design is not merely a slogan, but a dedicated methodological approach.
We have further workshops planned, and we expect our co-designers will continue to give us fantastic insights into our planned product that we could never have had on our own.
If you are working in haemoglobinopathies or patient portal design and would like to know more about what we are doing, we would be glad to hear from you
For more information about ProtoFlex's approach to condition-specific patient portals, contact us.
Related: ProtoFlex Sickle Cell Disease Patient Management Software — learn more about the clinical and patient management tools we are building for NHS sickle cell services.