Program update – May 2022

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.

Program highlights

  • 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 around targeted 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 vincent@thesynergist.org 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.