Case Study

Haemochromatosis UK is a patient-led charity, founded in 1990. We provides support, information and advice to people affected by genetic haemochromatosis, the UK’s most common undiagnosed genetic condition. We provide education to healthcare practitioners and stimulate research into this common, but commonly overlooked condition. We have 7 mostly part-time staff (4.5 FTE) including 2 specialist nurses who operate our patient-facing email/phone helplines. We are supported by 173 volunteers who provide 1-2-1 peer support to newly diagnosed patients and the 12,000 people in our Facebook support group. We are based in rural Lincolnshire.

Just 12 months post-launch, MyIron+ has become the de facto digital support for GH patients, largely due to our inclusive, collaborative design process, led by GH patients and involving a wide range of clinical and community stakeholders to address unmet, community-observed needs.

The app is already in use with 20% of the UK GH community and is being rolled out by dozens of NHS venesection services. The app’s Alice chatbot uses advanced AI to provide accurate real-time 24×7 natural language support to patients, helping us scale with the doubling of demand for our support since Christmas 2023. Alice has been trained using our clinically approved resources to provide trustworthy advice about GH as an alternative to “Dr Google” (which often frightens people unnecessarily).

The app has led to better treatment compliance, fewer unnecessary clinical appointments & better patient education/support. The core dataset is starting to be used for medical research to further improve patient outcomes.

We’ve shared our learnings with the NHS/other charities seeking to successfully deliver similar support for people with other conditions. It was delivered on time/on budget, iteratively & funded by public donors.

See https://www.haemochromatosis.org.uk/app

Genetic haemochromatosis is a life-long condition, leading to iron overload, which can cause liver disease, cancer, heart disease, chronic fatigue, diabetes & severe joint pain. Although there is no cure, diagnosed early, haemochromatosis is manageable and not life-limiting. Treatment is by very regular phlebotomy/blood donation.

As treatment spans primary and secondary care, as well as blood donor services, patients need a way of monitoring their blood results and venesections (phlebotomy) to ensure they maintain optimal (healthy) iron levels. Many patients self-manage and arrange venesections themselves under periodic supervision of a hospital consultant/GP.

The NHS App doesn’t support monitoring across these healthcare settings, so patients need other ways of tracking their treatment. In June 2023 we launched the free MyIron+ app to address this unmet need after a 12 month co-design/creation process involving dozens of our community and clinicians.

As the UK’s only charity supporting people with genetic haemochromatosis, we enjoy deep engagement and relationships with people affected by iron overload. Half our staff team have the condition and in-depth lived experience.

Before we started, we weren’t sure if people would use an app. Would it be easy and accessible for the wide range of people with GH? So, we surveyed our community to seek their thoughts. 88% of respondents were using paper diaries to track their care and 94% confirmed that an app would help with their care as only 27% found current approaches worked well for them. Almost 400 people gave feedback on what features would be useful in such an app.

As we progressed the idea, we wanted to bring patients together with clinicians responsible for their care, to design something which was precisely relevant and useful. We started by inviting people with the condition to online workshops to discuss current challenges with their care. These “pain points” led to further workshops where the app screens were prototyped using a sketch tool.

Once the sketches were complete, we commissioned a clickable prototype that looked like the app (but didn’t work functionally). This prototype was then shared with the community again for feedback. We also shared it with several clinicians experienced in GH care, to gain their feedback.

The consolidated feedback was incorporated into a final prototype, which was then used as the basis of the development process. Once the initial version was ready, we invited 20 people with GH to put it through its paces, to ensure it was consistent with the patient prototype and to provide feedback on usability and design. After a year of consultation and development, the app was launched in June 2023 on the Google Play and Apple App Stores.

Our initial aim was to have 500 app users after 12 months, focused on the UK. The app was launched in June 2023. After the first 12 months, it is now in use in over 20 countries, by almost 5,000 patients. Currently, an additional 40-50 patients install the app every day.

Recent, representative patient feedback :

a. About Alice, the MyIron+ iron overload AI chatbot

See attached testimonial from GH patient with PTSD.

b. About the app, generally

“Just opened the app and started adding my details. Looks fabulous. It will help me understand and help others understand and move forward. Brilliant.”

“Essential app for monitoring your iron overload – The app is incredibly useful, for planning treatments, documenting your iron levels and being able to reach out to a qualified professional when needed. Since diagnosis (through the charity that created the app as my GP was useless), I’ve been able to track my iron levels, keep note of my appointments, and get to a manageable level now. Thank you!”

A few months after the app was launched, we were approached by a NHS trust wishing to collaborate on rolling it out to all their GH patients. This led to a co-developed promotional campaign, which included app “postcards” which could be used in clinic for new patients to set out their target treatment parameters – on the other side of the card were QR codes that patients could use to download the app for free. This campaign has now been rolled out to several dozen NHS trusts, who recommend the app to all their GH patients.

The majority of app users have consented to contributing their anonymized app data to a unique cloud-based dataset, which is already the largest globally for this condition. Our charity is starting to work with accredited clinical researchers to analyse this dataset to provide new insights into the lived experience of people with GH – as well as to suggest improvements to treatment and care. We expect the number of research projects to accelerate over the next 2-3 years as the dataset grows and becomes increasingly comprehensive.

We think this initiative is notable for a handful of reasons :

a. Genuine co-design and collaboration to address real, unmet patient needs

Unlike many clinical IT projects, we started with the real, unmet patient needs by actively engaging with the GH community and listening to their feedback. We did this before we started, during the design of the app, post-development and pre-launch. Our community have been embedded in the process from start to finish, which is very unusual in similar projects. We continue to listen to feedback, which has led to several small but useful enhancements which make the app easier to use (eg if you change phone, all your data is automatically ported across when you install the app on a new device), support for a very wide range of cheap (Android) phones and tablets as well as ‘posher’ Apple devices.

b. The MyIron+ app was delivered on-time, on-budget

Most IT projects over run on cost and/or delivery timescales. We avoided this by putting a lot of work in upfront to develop cheap sketch-based prototypes, before a clickable prototype was created to assess usability and functionality. The development process followed an agile delivery methodology that favoured working functionality over paperwork, which helped reduce overall costs. These prototypes were crucial to explaining the app and garnering community feedback, so the finished product was useful and used. The app was built and tested for £15k, compared to many tens of thousands for other apps.

c. The app provides a platform for further patient-advocacy and research

A key aim of the app was not just to provide something useful for patients, but to develop a unique dataset that could be used for further clinical research. This dataset is being built and maintained largely by patients as they use the app, so the costs of building the dataset are very modest compared to other approaches (eg UK Biobank, Our Future Health – initiatives which have costs hundreds of millions, albeit for a wider range of conditions). We expect that the dataset will reveal previousy hidden aspects of the condition which can be used for further community advocacy with policymakers and clinicians.

a. Engage with the target (patient) community from the get-go

We invested a lot of time upfront in listening to people, which validated whether an app would be useful and – if so – what it should (and shouldn’t) do. We followed through with regular stakeholder workshops, feedback sessions and co-design workshops. This gave us confidence that what we were proposing to build was useful – and would actually be used.

b. Collaboration is key

We worked hard throughout the process to involve as wide a range of stakeholders as possible. This included clinicians and other less obvious stakeholders, like the charitable foundations and donors that helped to fund the development work. The resulting app is well-suited to its purpose, was developed and built on time and on budget.

c. Apps don’t launch themselves!

A lot of thought went into how we would promote and rollout the app, so it would actually get used in practice. This leverages our existing deep patient community relationships, but also more wide scale media and exhibition/promotional opportunities to get the message out to clinicians.

d. “Data is the new oil”

Over time, the most valuable aspect of the app to us as a charity is the consented dataset that patients have contributed via the app. This opens up exciting and cost-effective medical research opportunities where the data can be used to improve care for people with the condition through a better understanding of the condition itself and how treatment works in the real world.