Our results

CASE STUDIES

We provide patient engagement expertise from patient focus groups and workshops to patient support programmes. Here are some examples of our services:

•Patient experience,
•Patient input
•Patient Call to Action (Empowertment) 
•Patient-focus Support

Patient Engagement, Patient-focused Support and Patient Empowerment

Patient Experience

Issue: Company wanted to better understand the impact of the disease on daily life but had never previously interacted with patients

Results:
  • We identified people from different countries who were willing and able to share their personal story
  • A series of video montages were filmed of people in their home to capture the patient reality
  • The videos have been approved for use to support disease education through personal insights and experiences

Patient input

Issue: People living with rare diseases often have significant insight into the natural history of their disease and the impact it has on their life 

Results:
  • We brought together small to medium-sized patient organisations in Europe to attend a workshop to understand where and what could be beneficial for earlier input into early development compounds for clinical development
  • Attendees recognised the important role POs can play in building understanding of the natural history of the disease and the need for closer collaboration with biopharma companies.

Patient Call to Action (Empowerment)

Issue: The stigma of the condition prevented people speaking about problematic symptoms to their physician  resulting in sub optimal treatment

Results:
  • We designed a call to action support programme with the involvement of people living with the disease
  • Over 4000 people enrolled in the programme
  • People enrolled in the programme reported a better understanding of their disease and ability to speak to their physician
  • People referred to a specialist reported improved control of symptoms

Patient-focused Support

Issue: Physicians were concerned about the under-reporting of debilitating symptoms by their patients

Results:
  • We developed a visual scale to capture the major signs and symptoms reported for the disease
  • We tested the scale through focus-groups and
  • Pilots in selected countries  further refined  requirements based on patient and physician feedback
  • The tool gained endorsement from the European patient association
  • Through company support, the visual scale was translated into 15 languages and is freely available from the patient association website