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Rare thoughts & outcomes - navigating pathways to better outcomes in rare

Mobilizing pathway change – what the past 25 years have shown me

Welcome to OPEN Health’s second Rare Thoughts & Outcomes theme for 2021 – Navigating pathways to better outcomes. This is a topic close to my heart, and so it’s great to be focusing on how positive pathway change can lead to better outcomes across the Rare community.

Given rarity’s, lack of disease knowledge, and limited treatment options, current pathways are not fit for purpose, meaning people living with Rare often don’t experience optimal outcomes. In addition to poor outcomes, ineffective diagnostic, treatment, and management pathways can cause healthcare inefficiencies and lack of sustained uptake of innovation.

This theme will look at the key pillars to enable pathway change across all stakeholder groups, with a particular focus on how our clients can play a role in facilitating positive change. There will be a number of discussions and articles from across our centers of excellence on this wide-ranging topic, and we look forward to you joining us on this journey!

In the meantime, here are my top-line thoughts on its importance and how we can achieve better results:

It’s scary to say but this is my 25th year of working in the health care industry! Throughout that time, I have observed the very good, the bad, and the ugly when it comes to biopharmaceutical companies (Pharma) playing their part in positive pathway change. I have also been involved in many pathway change projects, including becoming a Black Belt in Lean Six Sigma pathway improvement. The statistics element of that was tough, but the real learnings came from the following communications-led imperatives:

  • Demonstrating the value of change
  • Bringing ALL stakeholders on the journey
  • Co-creating solutions
  • Proving the impact of change

There remains such an opportunity to work closer, better, and faster to deliver a real difference for those living with Rare, while bringing benefits to health care systems, society, and Pharma. It’s a cliché but WIN-WIN-WIN opportunities are there for the taking; if we can find ways of further connecting the combined force of the Rare community to bear on the challenges faced by patients and their families, we can ensure patients receive the optimal care and the best experience.

Mobilizing effective and sustained change in healthcare is never simple, but holding firm some core principles will help, such as:

  • Patient first

Maintaining a clear focus on patient outcomes as the primary driver for partnerships will help sustain trust between stakeholder groups. In addition, transparency on how every part of the partnership benefits from achieving the primary objective will also strengthen long-term commitment.

  • Communicate, Communicate, and err Communicate

You basically can’t do too much of this to ensure that stakeholders are made aware of the need for change and understand how it can happen and what value it will bring. Transparency of intent is essential for Pharma to build trust in their objectives and demonstrate that the company is looking ‘beyond therapeutics’.

  • Co-create tools that enable change

A multitude of options here, from burden of illness data to preceptorship programs and patient support activities. It's critical that there is cross- functional collaboration within Pharma to ensure that these tools not only complement each other but really meet the users’ needs to drive positive change.

  • Measure and celebrate success

Tracking the benefits of pathway improvement will help sustain long-term the change. This feels very prescient for Pharma at this time given the volume of potential one-time treatment emerging. Communicating positivity and best practice for how it was achieved is critical to mobile change into the future

We are looking forward to sharing further thinking soon and hope everyone finds some value in our efforts! Stay tuned……

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For any questions about our Rare Thoughts & Outcomes theme or to learn more about our commitment to Rare. Please contact:

Gavin Jones, Global Advisor, Rare Diseases


14th September 2021


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OPEN Health

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