I think this is a great resource especially because patients/ people are always looking for TRUSTED information, and bringing together valuable resources into one place can give them all more credence as well as improved accessibility.

I believe here is a case that cleary shows the importance of patients leading a specific advocacy. It also shows that with support form external parties, patients can lead the way to build patient groups, do health literacy and empower other patients as well.

understanding longevity and a follow up would be useful. Great study

Fantastic to see such an underserved area of healthcare finally get some of the attention it so urgently needs.

It would be fab if education projects like this had some kind of 'impact predictor' by asking 'test users' to rate their confidence in taking an active role in their healthcare decisions before engaging with the educational materials and after, and perhaps also assess any changes in their health literacy. Feedback like this could be really valuable for optimising the value of the resources/platform further.

I'm also curious to know:

• Which topics/facts were particularly useful or interesting for patients

• What specific accessibility barriers were flagged regarding previously-existing resources and how these were addressed

• What the sponsoring company is doing to ensure longevity / continued relevance of the educational platform

I like the fact that this study noted that it wasn't trying to reinvent materials, it was a matter of accessibility and not availability and that this project sought to create a space for these resources and elevate this via the hub, while continuing to educate pharma on the importance of multi stakeholder engagement.

Wholeheartedly echo Michelle's comments here. This is an awesome exmple of collaboration and using social. media tools with gusto. The insight on accessibility is golden ... something that can be readily addressed. Can't wait to see what happens next with other WH challenges.

Excellent example of partnering effectiveness with a high number of engaged stakeholders, and interesting to learn that it is accessibility rather than availability of disease education which was the key gap. It would be even more impressive with the inclusion of behaviour change / metrics on patients inspired to self-advocate and share in the decisions around their management.