Past project: Patient Information Pathways

Defining best practice for information pathways development

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Often patients with rare conditions do not always receive sufficient accessible information about their condition and treatment at the appropriate time. Patients and patient groups are the experts at understanding what information is useful for patients from the point of diagnosis and what the most appropriate format for the information is.

Working in conjunction with the National Specialised Commissioning Team, we worked on a project looking into patient information pathways. Working with seven different conditions and services we reviewed these pathways and looked at identifying good areas of practice, areas for improvement and defining what makes a ‘good’ information pathway for patients. The different pathways that were reviewed as part of this project were:

  • Alström
  • Epidermolysis bullosa
  • Secure Forensic Mental Health Service
  • Gender Identity
  • Paediatric liver transplantation
  • Pulmonary thromboendarterectomy
  • Rare Mitochondrial Disorders

The project included surveying patients and healthcare professionals to gain their insight into what makes a good pathway as well as looking literature on ‘good’ information.

The project report on what makes a 'good' information pathway is below:

Genetic Alliance UK Patient Information Pathways report