Overview
HPP developed international and national calls to action to improve care for HS, a debilitating skin condition. The advocacy resources we developed had the patient voice as a continuous thread throughout, and they have been widely used to strengthen advocacy across the HS community.
Jillian Hinkston, Co-Founder, HS Warrior Stories
The challenge
HS is a chronic and painful inflammatory skin condition characterised by recurring nodules and abscesses that can have a notable impact on the quality of life of people with the condition. Although HS affects around 1 in 100 people, awareness of the condition and its impact is low.
Long delays in diagnosis, unsatisfactory treatment choices and variable access to multidisciplinary care often prevent people with HS from receiving the timely and high-quality care they need.
Patient organisations focused on HS also have differing levels of capacity around the world. This project aimed to build a patient-focused call to action that advocates could use to call for more person-centred, comprehensive care at a global and national level.
What we achieved
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We worked closely with a multidisciplinary steering committee to develop a global call to action supported by a video, an infographic and 10 national summaries that support local advocacy.
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Since publication, the report and accompanying country summaries have been translated into eight languages. We also developed a manuscript that included steering committee members as co-authors, which was published in the British Journal of Dermatology.
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Feedback from the steering committee on the project has been extremely positive, particularly from patient representatives, who remarked on HPP’s commitment to delivering high-quality, patient-led and person-centred outputs.
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We were approached by one patient advocate who used our work to build advocacy on HS in Japan; explore the actions being taken there to overcome barriers; and amplify the work of Japanese doctors to help people with HS find and access treatment.
Core resources
Project information
HPP was commissioned by UCB. Please see the project page for further information.
Get in touch
If you want to find out more about our work on HS, contact Jody Tate, Chief Executive Officer.
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