Past project: Patient Information Prescriptions

Analysing patient information and finding areas of improvement

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Patients with rare conditions often do not always receive sufficient information about their condition and treatment in an accessible format or at the appropriate time. The Cancer Patient Information Prescription team is developing an information website with information for patients with cancer.

Unsurprisingly, there is little information available for people with rare cancers. So we worked with the National Specialised Commissioning Team to review all information available to patients with rarer cancers and assess where the gaps fall in the pathway so that this information could be fed into the development of the Cancer Patient Information Prescription team's website. The rare cancers that we were reviewing the information available for are:

  • Choriocarcimona (Gestational Trophoblastic Disease)
  • Ocular Oncology
  • Pseudomyxoma Peritonei
  • Retinoblastoma

We produced a report of our findings of what information is available and where the gaps fall and it is available below:

Genetic Alliance UK Patient Information Prescriptions report