Program update – September 2021

Program update – September 2021

Here is an update on latest developments in FT3 including ideas to get involved and engage your network. 

At the last Board meeting, FT3 members clarified our unique role as a global catalyst to identify and share translatable good practices & learnings in precision medicine (PM) across our 3 strategic pillars: Support Data & Evidence Development, Provide Education & Tools, and Build the Accessibility Conditions for PM.

Building on the gaps and shared needs that the FT3 community identified, we are developing tools and resources for key stakeholder champions in PM, designed to be adapted to the local context. There are 4 groups of resources: resources for patient organizations and support for HCPs, a library of patient stories and evidence, advocacy tools, and capacity building resources. We aim to develop the first testable resources this year.

Thanks to the hard work and expertise contributed by FT3 collaborators, we now have several resources in production. Highlights include a draft Patient Information Needs Map resource, a draft Q&A resource tool, and a draft Access Barrier Cause-Effect Canvas ready for feedback. Help us bring these resources to the next level of maturity by sharing your feedback and sharing this update with your network.

First tools and resources for PM champions now available for further development with the FT3 community

The PM champion toolbox is a suite of resources for key stakeholders in PM (e.g. patient organizations, key HCPs, key health system actors) across the 3 strategic areas of FT3 that build on existing learnings and good practices. 

  1. Draft Patient Information Needs Map: This co-created tool aims to help PM stakeholders develop informational resources and strategies that meet individual patients where they are in the patient pathway. The map provides an overview of the key decision points and information needs. Please share the Patient Information Needs Map with your colleagues and networks for feedback and share any ideas or opportunities to apply it.
  2. Parallel Q&A resource tool to target individual Patients: The draft Q&A builder for PM advocates and champions, co-created by working group contributors, is composed of questions that individual patients can ask their HCP in order to guide shared decision-making, leading to better health outcomes, with a particular focus on genomic testing and biomarker-driven care. This patient-facing part of the resource is currently being reviewed with the HCP community. Please share your feedback and connect us with HCPs who could help us define HCP support needs.
  3. The Draft Access Barrier Cause-Effect Canvas aims to help identify the patient pathway in a given focus area, as well as access barriers and good practices experienced by different stakeholders at each step. The first draft is now available here for feedback and an interactive session on the canvas is planned at the Patient Engagement Open Forum on October 6.

Also in the pipeline

  1. Country & Condition Cards: The availability of PM varies from country to country, making it hard to make comparisons and share best practices. Policy makers are often not aware of the current situation and potential advocates working towards advancing access to PM do not have easy facts at their disposal. The country and condition cards aim to fill that gap. Currently, we are finalising our first country card prototypes using the Netherlands and Ireland as a starting point. Look out for an update in the next few weeks to share your feedback and tell us if you are interested in helping us prototype the Cards in your area of work.
  2. Adaptable patient information resources for Patient Organizations: to support FT3’s mission to bring together learnings and good practices in PM, the sub-working group has identified the first good practice resources that are now being converted into adaptable formats. Tell us about any other good practice resources in PM that could be a model for other users. 
  3. Tell the story of PM: this sub-working group is focused on developing an approach and storytelling materials to tell the story of PM and why it matters, for different stakeholder groups. This is a tool that various stakeholders can use and adapt to get exactly what they need to advocate for PM in various environments and locations.  
  4. Library of patient stories & evidence: contributors have identified an opportunity to bring together and link existing patient stories and evidence across PM. We are now using the first patient stories proposed by the FT3 community to try to develop a common framework for sharing patient stories. Share your patient stories and let us know if you want to be involved.
  5. The Precision Medicine Synapse (in beta) supports FT3’s mission to defragment the PM ecosystem, facilitate collaboration and share best practices to drive change. It is an interconnected and dynamic repository of precision medicine experts, activists, initiatives and resources that is focused on building a crowdsourced global actionable community on precision medicine. To date there are over 279 resources, 269 organizations, 111 events and 46 people mapped in the PM environment. 
  6. Call-To-Action publication: FT3 members have been working on a “Call to Action” publication to create the right context for the program to succeed, build awareness of the program and approach, and to build a wider support network to develop and disseminate our activities. We are now in the last stages of finalizing the manuscript and aim for publication in early 2022.

Building an influence network to engage, cocreate and cascade outputs

The complex challenges of PM can only be sustainably addressed through close multi-stakeholder collaboration across the whole PM ecosystem. An important FT3 strategic driver is to connect and cascade through ambassadors in the wider PM community. 

Extending the FT3 community through disease awareness days

Disease awareness days are an opportunity to raise awareness of PM, identify challenges, and bubble up good practices, as well as engage stakeholders to support FT3 activities. It is also part of FT3’s mission to support ongoing efforts in PM. These efforts will continue in September, starting with CUP World Awareness Week and Thyroid Cancer Awareness Month.  Please share and engage with our social media channels (on Twitter, LinkedIn and Facebook) and use the suggested messages and visuals provided in the social media toolkit which will be updated on an ongoing basis. Tell us about your disease awareness activities or any other campaigns that we can connect to and support.

Latest storytelling content to share with your network

  • This blog, with contributions from Tanya Knott of the Sarah Jennifer Knott Foundation, Dr John Symons of the Cancer of Unknown Primary Foundation and Warnyta Minnaard of Missie Tumor Onbekend, brings together different perspectives on CUP and sets the scene for the upcoming World Awareness Week.
  • This interview with FT3 member Brian Tomlinson of Foundation Medicine highlights the importance of understanding the genomic drivers of a person’s cancer in order to impact cancer care in the future.