Navigating pathways in rare - key learnings

Written by Gavin Jones, Global Advisor, Rare Diseases on Wednesday 14th July 2021

Having reached the conclusion of our second Rare Thoughts & Outcomes theme of the year, we are wrapping things up with a quick overview of the key learnings. We’ve enjoyed some insightful and wide-ranging conversations across communications, value, and leading-edge data generation. As always, there were fantastic contributions from the rare diseases community, and I was delighted to hear numerous patient-first opinions from even the most techy folk in our business! This is some of what we learnt:

  • Better understanding of current experience through insights and data
  • Lay language resources to guide through change
  • Greater connectivity amongst healthcare professionals to cascade education and change
  • Co-creation of pathway change with the true experts (i.e. the rare community)
  • Harnessing and generating data to prove the sustained value of pathway change and innovative data
  • Embracing technology without losing sight of who we are striving to serve

We hope that there are some useful thoughts and inspiration within these conversations and articles. These will remain available so please do dip into the content when you have a moment and contact Gavin if you have any questions or comments.

1. Article: Rare Thoughts & Outcomes - Navigating Pathways to Better Outcomes in Rare

2. On-demand Webinar: Mobilizing Pathways to Accommodate New Transformative Treatments – Using CF as a Case Study

  • Panelists:
    Tracey Daniels - Clinical Lead, York Teaching Hospital NHS Foundation Trust
    Ella Balasa - Patient Advocate and Health Engagement Consultant
    Eleanor Thistleton - Parent and Medical Communications Expert, OPEN Health
    Tom Smith - Patient Advocate and Life Science Public Engagement Expert
    Gavin Jones (Panel Chair) - Global Advisor, Rare Diseases, OPEN Health

3. On-demand Webinar: Generating Data-Led Diagnosis Accelerators in Rare Disease

  • Panelists:
    Sean Gordon - Founder of Rare Funding Team, Health Tech Columnist, Advocate
    Annie Rankin - Strategy Director Communications, OPEN Health
    Tony Cox - Development Director RWE, OPEN Health
    Victor Chirikov - Associate Director HEOR, OPEN Health
    Gavin Jones (Panel Chair) - Global Advisor, Rare Diseases, OPEN Health

4. Article: Navigating Healthcare Professional Connectivity in Rare

5. Article: Forming Early Partnerships to Understand the Patient Pathway


If you have any questions or comments about our Rare Thoughts & Outcomes theme or want to learn more about our commitment to Rare, please get in touch.


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