Taking the opportunity of World Lung Cancer Day and the World Conference on Lung Cancer, we’re pleased to share some recent updates and achievements by the FT3 community in lung cancer and beyond.
If you missed the most recent Town Hall meeting, you can access the slides here.
Please help us bring our work to the next level by sharing this update with your network, and thank you for your continued support in helping us make precision medicine a more accessible reality for patients!
Building on World Lung Cancer Day
FT3 hosted an open face-to-face session at the World Conference on Lung Cancer on August 6, where FT3 community-created tools to improve access in PM were presented to an international audience, followed by a discussion on local needs in improving access to PM. The slides from the presentation can be found here.
Lung cancer patient support and advocacy charity ALK+ UK used the Biomarker Testing for Cancer Treatment Adaptable Resource to develop their own resource and help their patients find the right information and make informed decisions at the right time. Discover it here. Are you interested in adapting thisresource for your geography and/or other conditions? Please contact:firstname.lastname@example.org
Having prototyped the first Country Agnostic Condition Card for colorectal cancer, a second country agnostic card for lung cancer has been developed, aiming to provide advocates with an overview of the general availability of precision medicine tests and treatments for lung cancer in order to support care level improvements and advocacy efforts. Discover it here and share your feedback with email@example.com.
Expanding FT3’s reach globally
In a joint session with PFMD, FT3 held an interactive session with the Alliance and Partnerships for Patient Innovation and Solutions (APPIS) on August 2. This workshop brought together over 50 patients and other stakeholders from the Asia Pacific, Middle East and Africa region, representing an important step towards increasing the Program’s visibility globally. Participants were invited to share barriers and best practices in PM in their countries. The recordings and results will be available soon on Precision Medicine Synapse.
We are continuously assessing opportunities to increase the visibility of FT3 at upcoming conferences and events. Please let us know what activities and events you have planned that we can link to, and which events/conferences you will be attending or presenting at this year.
Other Program Highlights
FT3’s first country-level pilots are getting started with intake calls in Spain and Canada. The expression of interest is open for 1-2 other countries until August 22. Champions in PM of all parts of the world are welcome to apply.
Our Library of Patient Stories in PM continues to grow with new stories in Cancer of the Unknown Primary (CUP) and Leiomyosarcoma. The aim of these stories is to capture the patient experience and learnings at the individual and collective level to support care level improvements and advocacy efforts. Access all stories here.
In collaboration with Colorectal Cancer Canada, the Precision Medicine Q&A Builder has been adapted for colorectal cancer, resulting in a series of resources in multiple languages. We would like to thank Maria and Barry for piloting this initiative. Access all adaptable resources here and read more about our collaboration with Colorectal Cancer Canada in our interview with Maria. Are you interested in adapting this resource for your geography and/or other conditions? Please contact firstname.lastname@example.org.
The scoping literature review focused on provider-patient communication is currently underway. Learn more about this initiative in our latest interviews with contributing authors Navdeep Dehar from Queens University in Ontario and Erin Dickman from the Oncology Nursing Society.
Here is an update on latest developments in FT3 including ideas to get involved and engage your network.
The first quarter of 2022 has been very exciting and full of great achievements thanks to the support of the entire From Testing to Targeted Treatments (FT3) Community of Practice. We are thankful to all those who contributed and we are happy to share with you an update of the past few months from the From Testing and Targeted Treatments (FT3) program, including ideas to get involved and engage your network.
We are delighted to confirm the recent addition of two new members to FT3, Colorectal Cancer Canada and Takeda, and warmly welcome Nicole Sheahan (Global Colon Cancer Association), Donatella Decise (Novartis) and James Creeden (Independent Expert), to the Board. Last but not least, we are pleased to announce that Sandra Blum (Roche) will join Andrea Ferris (LUNGevity) and Denis Costello (CML Advocates Network) on the FT3 Executive Committee. We are honored to be able to benefit from their support and expertise as we continue to move forward.
Please help us bring our work to the next level by sharing this update with your network, and thank you for your continued support in helping us make precision medicine a more accessible reality for patients.
Building greater awareness around all the work underway is an important focus in 2022. Ben (Comprehensive Cancer Center Munich), Andrea (LUNGevity) and Denis (CML Advocates) represented FT3 in a multistakeholder panel at the Festival of Genomics & Biodata on the 28th of January. The event was founded on the social mission to bring the benefits of omics to patients faster and reached over 7000 participants. We are continuing to assess different opportunities to increase the visibility of FT3 at upcoming conferences and events. Please let us know what activities and events you have planned that we can link to, and which events/conferences you will be attending or presenting at this year.
Following 2 public consultations, the Precision Medicine Q&A Builder and the Patient Information Needs Map are now being piloted in colorectal cancer in collaboration with DiCE, GCCA, and Colorectal Cancer Canada. Maria and Barry from Colorectal Cancer Canada, Marianna from DiCE, and Nicole from GCCA are helping us make great progress with the colorectal cancer pilot. We will begin by testing a Q&A resource builder for colorectal cancer and a first draft of a country agnostic colorectal cancer condition card.
The latest adaptable tool for PM champions, the biomarker testing for cancer treatment adaptable resource, is now available for feedback. We thank Jean Jenkins, Karen Wood, Christine Ghione, Krystin Larkin, Lisa Giuroiu, Maria Watson, Susan McClure and others for their expertise and hard work in putting this resource together. You can find the resource and access the public consultation here.Share with us your feedback and help us bring this resource to the next level of maturity.
Over 110+ advanced precision medicine educational resources have been mapped and are now available on Precision Medicine Synapse. These resources aim to help patient advocates and POs better navigate the field of precision medicine. Please refer us to other advanced resources and tools designed to support patient advocates and patient organizations so they can be included.
We are continuing the engagement and collaboration around Tell the Story of Precision Medicine, where we are co-creating a storyline that explains what precision medicine is, with its promises and challenges, from the lens and experience of patients. We thank all the contributors that worked hard for the refinement of the current draft v.04. This is expected to be hosted in the FT3 website: the wireframe and mockup are also being co-created and will be shared for feedback in May. Please review the current draft and share it with your colleagues and network to gather inputs and ideas.
We have kick-started an analysis of good practice resources aroundtargeted therapies to build on them and co-create a new adaptable resource for PM champions. In order to develop a first outline, please share with us your interest in this workstream so that we can include you in upcoming calls.
We have kick-started a narrative literature review focused on provider-patient communication. We aim to shed light on research that has explored the complexities of communication in precision medicine, including aspects such as shared decision making, expectations and psychological impact. The publication will deliver conclusions from previous research on how healthcare teams can support and be supported in managing these considerations.
A second version of the visualization of patient stories for the library of patient stories in precision medicine has been developed. Moving forward, the focus will be on adding more stories to the library and improving on the actionability of the stories, aligning with upcoming disease awareness days and piloting opportunities.
The FT3 community members have stressed that data education in PM is an important area, including the ability of patients & healthcare professionals to understand, interpret and discuss biomarker test results, enabling informed decisions as well as better management of expectations. We are forming a Data Education sub-working group to address these barriers. Please contact email@example.com if you are interested in being involved in this project.
The Stakeholder Expectations Matrix was completed and findings were presented to the FT3 community members. The interviews generated important insights on expectations of different stakeholders of each other in PM and priority actions by stakeholder group, and confirmed the need for cross-stakeholder collaboration to bring together current programs and best practices to support more universal access to PM globally. We thank Andrea Ferris (LUNGevity), Jo Gumbs (OcuMel UK), Julia Barenghi (DiCE), Andrea Stevens (Janssen), James Creeden (FMI), Peter Krein (Loxo Oncology) and Benjamin Horbach (Roche) and many others for their expertise and leadership in guiding this effort. As a next step, we are discussing a potential publication of findings with the sub-group.
A new Country & Condition Card has been developed for Germany, starting in lung cancer, and cards in other countries including the U.K. are being developed. We are working on a prototype card for Ontario, Canada which would be our first regional card, enabling comparisons of PM availability within countries. . We have also drafted the first country agnostic card for colorectal cancer, which would provide advocates with a snapshot of the general availability of precision medicine tests and treatments for colorectal cancer irrespective of geography. We plan on completing more country agnostic condition cards throughout the year. Let us know if you would be interested in developing a Country & Condition Card for a given geography or condition.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.