Background The EHDN Physiotherapy Working Group (PWG) has developed clinical guidelines for physiotherapists working with people with Huntington’s Disease (HD). Little is known regarding how these guidelines have translated into the community and how such information might best be accessed by HD community stakeholders.
Aim To determine best practice for the dissemination of clinical information, including the physiotherapy clinical guidelines, to non-clinical members of the HD community, including patients, caregivers, and home health attendants.
Methods PWG members developed a flowchart of current avenues for providing patients and caregivers with accessible information regarding best practice for physical therapy. Tools included a range of web-based, social media and traditional paper materials including fact sheets and brochures.
Outcomes Members of the Community Workstream determined that there was a need for greater input from stakeholders to determine the most appropriate forms of dissemination. A protocol for a co-design workshop was developed to maximize participation of consumers and clinicians in jointly preparing materials for translation of the clinical practice guidelines to the community.
Conclusion More information is needed to understand how best to share information developed in the scientific community and improve implementation of best practice in the community. Barriers and facilitators to accessing healthcare material are not known. This workshop may serve as a template to support global dissemination of the HD PT clinical guidelines.
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