H006 Maximizing the delivery of evidence-based literature to persons with HD: a co-design study
Year: 2024
Type: conference-abstract
Abstract: Background The implementation of evidence-based literature (EBL) into clinical practice can take upwards of 17 years. Implementation is stymied in part by a knowledge gap on the part of healthcare providers and persons with Huntington’s Disease (PwHD). A Clinical Guideline for Exercise and Physiotherapy in HD was published in 2020; however, implementation directed at providers may not be effective for uptake among PwHD. Aim: To use co-design to engage relevant stakeholders in a conversation about how healthcare information should be designed and delivered to maximize uptake. Methods We conducted a co-design workshop with 6 individuals at the European Huntington’s Association meeting in October 2023. There were 3 activities proposed to stimulate Discussion Day in the Life, Who-Do, and what do you hear/what do you see? Participants discussed experiences with accessing healthcare information and services, availability of EBL, actions needed for dissemination of information, and then engaged in active solution building related to receipt of information. Results/Outcomes The primary themes included: 1) Different health information is needed at different stages of the disease, with the most notable need at diagnosis; 2) Information should be easily digestible and kept to one page; 3) Paper copies are preferred to online resources; 4) Face-to-face EBL delivery by an HD Specialist. Conclusions The initial themes derived from this workshop will guide future larger-scale online co-design workshops aiming to target a larger and more diverse participant pool to inform the development of patient-facing materials. Our results demonstrate the important role of the specialist provider in relaying EBL to PwHD.
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Funder: Sage Therapeutics
OpenAlex ID: W4402374876