Readers may remember a few months ago I mentioned completion of a patient journey for HSP (https://hspjourney.blogspot.com/2022/12/hsp-patient-journey.html). I was recently chatting with Lori who worked with me putting this together. There are two things to note:
Firstly, there is some excellent work going on to get the patient journey translated into different European languages. You can now download in English, Italian, Dutch, German, Spanish and Czech here: https://www.ern-rnd.eu/disease-knowledge-hub/ataxia/. Lori tells me that other languages are being worked on, which increases the usefulness of this document.
To remind people - the journey comes in two parts, depending on your preferences:
Info-graphic: https://www.ern-rnd.eu/wp-content/uploads/2022/12/ERN-RND-patient-journey-HSP_text-as-curves-1.pdf
Text-based: https://www.ern-rnd.eu/wp-content/uploads/2022/12/Kopie-von-HSP-Patient-Journey_final-002-1.pdf
There is more information on the text-based version, but the key points are shown graphically on the info-graphic.
Secondly, regular readers of my survey results will recognise that a lot of the aspects in the journey are points that I have previously reported on with my survey results. Overall, there are three main data sources I have used:
- There are ~1750 people who have submitted answers to my surveys over the 10 years that these have been run, who have contributed directly.
- There are ~400 members of the UK HSP Support group whose stories I hear about through my role as Chair, through our events and meetings, through our newsletters, and through numerous conversations.
- Lastly, there are stories that I read from other physical and virtual HSP groups around the world, and which are reported within HSP research papers over recent and previous years.
Overall, it means that this patient journey has been directly informed by around 2000 people with HSP, and indirectly by many more. Simply - thank you to everyone!
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