2021 From Testing to Targeted Treatment (FT3) Annual Report

Transforming global good practices into resources to improve patient outcomes & experiences in precision medicine

Intro from the Program Director

The From Testing to Targeted Treatments (FT3) program is a global collaborative multi-stakeholder initiative working to make precision medicine (PM) an accessible reality for patients, in oncology and beyond. Our aim is to act as a global accelerator in PM, identifying global learnings and good practices and turning them into practical tools and solutions to advance patient access to PM at the local level. We are catalysts working for change in precision medicine thanks to a growing and active multi-stakeholder community of over 19 members and 68 contributors.

Since its inception in July 2020, FT3 has grown rapidly, establishing a shared program, strategy and work plan, which are supported by a multi-stakeholder membership and Community of Practice.

Within this context of rapid progress, clarity in our shared focus and approach was required. The Board meeting in May 2021 confirmed FT3’s unique value proposition as an accelerator identifying global needs, bringing together existing learnings and best practices, and translating these into practical tools and resources to accelerate access to PM in different contexts, starting with resources for PM Champions. These resources would be adaptable to the relevant local context, and would endeavor to address needs across FT3’s three strategic pillars: data & evidence development; education & awareness; and addressing systemic barriers to access, all with a focus on understanding and improving the patient experience.

The FT3 Community has now developed the first testable toolkit for PM Champions, including a “Canvas” for capturing the patient experience and access barriers, a Q&A Resources Builder for Patient Organizations (POs), Country & Condition Cards, what will become a Library of Patient Stories in PM, and beyond. In 2022 we will continue to extend this beta toolkit and test its elements within the wider PM community through public consultations. Additionally, we will aim to identify and establish local pilots with local champions to gather feedback on resources, capture local insights and best practices, and develop case studies.

A key factor in our future success will be the FT3 influence network. In 2021, the Board welcomed Denis Costello, Executive Director of CML Advocates Network, into the Board and Executive Committee, and also confirmed CML Advocates Network as an additional member. Efforts will continue to grow the FT3 Community of Practice thanks to a revised and refined membership approach, agile stakeholder engagement strategy, and ongoing efforts to increase the wider visibility of FT3 and its activities.

The Precision Medicine Synapse supports the universal sharing of PM efforts (irrespective of scale or focus) and discovery of active organizations, people, initiatives, resources and events across the PM landscape; more than 400 organizations and their efforts have been mapped to date.

In 2021, the FT3 Members and Community reached an important milestone in delivering the first resources for PM champions within a broader pipeline of activities, supported by a growing influence and ambassador network. The continuing positive evolution of the program and of the Board, even within the current health context, sends a strong signal that FT3 is building the capability and capacity to deliver, and also reinforces the need for such a collaborative approach to PM.

In 2022, the FT3 Community of Practice will continue to refine and enhance the toolkit for PM Champions. We also aim to develop the first case studies based on our local pilots with PM champions. Some new areas of work will include accelerating advanced educational resources for Patient Advocates, supporting health care providers-to-patient communications in PM, improving patient understanding of data-related topics, and convening multi-stakeholder discussions to identify barriers in evidence and valuation of PM.

To join the FT3 community of practice, discover our tools or participate in our work, please visit our website for more information.

Helena Harnik

Executive Director FT3

- View less

2021 Achievements

  • First tools and resources for Precision Medicine Champions to improve patient access & experience in Precision Medicine
  • Reinforcing an influence network of Precision Medicine champions to engage, cocreate and cascade
  • General
  • Educational resources & frameworks
  • Patient Experience and evidence
  • Advocacy resources and tools
  • Enabler of Precision Medicine

First tools and resources for Precision Medicine Champions to improve patient access & experience in Precision Medicine

The FT3 membership agrees that a core element of our overall mission is to accelerate and bring together existing learnings and best practices, translating them into practical tools and resources for PM champions.

Our active community offered its rich breadth of experience and meaningful insights throughout 2021 as we strove to develop the first tools to help us realize this mission.

Patients, patient organizations and ambassadors of PM among healthcare professionals, industry executives, and representatives of other stakeholder groups, will be able to use these tools to accelerate the benefits of precision medicine by generating better evidence, creating awareness, and building the conditions for better access to targeted medicine in oncology and beyond.

How the toolkit is being developed:
  1. Capturing global learnings and good practices
  2. Co-creating through multi-stakeholder working groups and consultations
  3. Adaptable to the local context
  4. Practical and actionable for real impact
  5. Focused on understanding and improving the patient experience and outcomes

Educational resources & frameworks

Our goal is to learn from good practices and patient input to develop fit-for-purpose educational resources because we know a more informed patient leads to better outcomes. FT3 acts as a catalyst for best practices; we aggregate them and build on them through multi-stakeholder collaboration, and we make them freely available to help reduce the burden of developing new resources or making updates to existing ones.

The work started with the FT3 session ‘Visualizing the patient pathway in precision medicine: the identification of barriers and best practices across different stakeholder groups’. It was the first opportunity to gather input from over 200 people representing a broad sample of the patient and PM community.

An important theme that emerged was the importance of capturing the patient experience - what they feel and do - at different steps of the PM pathway, which has also been highlighted by FT3 contributors. Participants identified over 47 potential barriers and 24 best practice or case study examples in the co-creation group activity.

Examples of Barriers

  1. Health literacy - understanding the need to ask questions, seek out the right doctors
  2. Limited availability of tests
  3. Patient is exhausted by the high number of tests - treatment might be initiated early to spare the patient
  4. Long GP referral
  5. Reimbursement issues
  6. Access to specialised centre in remote areas
  7. Lack of awareness of tests. Particularly liquid biopsy

Examples of best practices/ideas

  1. Molecular tumour boards - create teams of dedicated HCPs with different areas of expertise
  2. Using liquid biopsy early on could help in diagnosis and speeding up the process
  3. Patient registry to generate better data
  4. Cross border multi-stakeholder knowledge brokering of best practices
  5. Medical Education in primary care
  6. Evidence based demonstration of the value of early and comprehensive testing for all stakeholders from a clinical AND economic perspective
  7. Virtual component of tumour boards to expand circle of expertise across geographies

Building on the 320+ needs identified at the PEOF session in 2020, and the mapping of existing good educational resources for patients, in 2021 the Education & Awareness working group focused on the co-creation of a suite of adaptable resources, starting with a patient information needs map and a Precision Medicine Q&A Builder.

Patient Information Needs Map

The Patient Information Needs Map is a tool for PM advocates and champions including HCPs, to help identify information needs and gaps in existing resources for individual patients.

It is a customizable tool to guide and organize information resources and other ongoing efforts to support patient education and awareness. This resource was launched for public consultation in December 2021.

Discover the tool now >

Questions & Answers Resource Builder

The Precision Medicine Q&A Builder resource also launched in December 2021 for public consultation. This adaptable tool fulfills the need for a comprehensive PM resource that can support patients to ask the right questions at the right time. While several good examples of Q&A resources already exist, they may not incorporate elements related to PM, and are usually disease and country-specific.

Discover the tool now >

Canvas to identify access barriers and solutions

The Draft Access Barrier Cause-Effect Canvas is a practical tool to visualize challenges along the patient pathway.

It has been inspired by existing tools such as the “Vision 20-30 Building an Australian Cancer Futures Framework” (National Oncology Alliance - Rare Cancers Australia. November 2020. P 20-21.) and the “Optimizing oncology care through biomarker adoption: barriers and solutions” resource (IQVIA Institute. August 2020).

The Canvas was validated and refined by the wider patient and PM community at the Patient Engagement Open Forum that saw more than 200 participants from 31 countries around the world, over a third of which were from the patient community. It also built on learnings from Cancer of Unknown Primary (CUP) World Awareness Week - the CUP patient pathway illustrated how the Canvas could be adapted and utilized in different contexts and disease areas.

Discover the tool now >

Patient Experience and evidence

Amplifying and understanding the patient experience is important, especially psycho-social elements - how it is to live through the experience, what individuals do or feel. Therefore, FT3 is working towards developing a library of patient stories in precision medicine that visualize each patient’s pathway according to a common framework, and highlight learnings and best practices with a focus on the patient’s personal experience.

In addition, the stories could illustrate the value of PM and provide experience-based evidence of gaps and opportunities. In 2021, three patient story prototypes were co-created with the working group.

Advocacy resources and tools

Country and Conditions cards

The availability of precision medicine differs considerably from country to country, making direct comparisons difficult, as well as identifying and sharing best practices between countries.

Even within one country, the PM situation can be complex and hard to understand, and the environment is quickly changing. Advocates who are working towards better access for PM in their country need to have a set of simple and clear facts at their disposal. The country and condition cards aim to fill that gap by giving a snapshot of the current situation of PM availability in a given country and for different conditions.

By presenting information in a comprehensive and visual way, this enables advocates to take action, and provides help to patients who need support. In 2021, the key parameters for the cards were co-created and a prototype for the Netherlands followed, with a focus on lung cancer.

Telling the story or PM - what is PM and why does it matter?

“Tell the story of PM” is an actionable advocacy tool filling a gap in helping different stakeholders understand what PM is and why it matters.

A gap has been identified; the story of PM has not been told as such, in the context of wider medical progress, with a history and a future.

A review of existing resources & literature showed that precision medicine is mainly explained in a very technical way and there is a lack of comprehensive information in lay language.

A review of existing resources & literature showed that precision medicine is mainly explained in a very technical way and there is a lack of comprehensive information in lay language.

The working group clarifies the narrative and the strategic approach: the importance of using patient stories to tell this story and to highlight the patient experience; explaining the history of PM, where we are today and where it’s going; highlighting not only why it’s exciting but also the current challenges; combining storytelling with targeted calls to action.

In 2022, we will work on further co-creating and consolidating the key storytelling points, defining the best methods for delivery and testing the approach within the wider community.

Peer-reviewed publication highlighting the PM ecosystem challenges

The rapid progress FT3 has made in the past year supports the idea that true multi-stakeholder collaboration across the whole health system is the best way to sustainably solve access issues in PM. A peer-reviewed publication has been in the works over 2021 to bring attention to the persistent problem of fragmentation in the PM ecosystem, present the urgent need for multi-stakeholder collaboration across the whole health system as the best way to sustainably solve access issues in PM and to make a positive impact on patient outcomes & experiences. We expect a 2022 publishing date, thus providing another resource for PM advocates to use in calling for systemic change.

Enabler of Precision Medicine

Stakeholder matrix

In collaboration with Monmouth partners, FT3 carried out an interview-based survey to identify and capture the knowledge and experience of different stakeholder groups in PM, as well as determine what each stakeholder expects from their own and other stakeholder groups. The aim was to better understand how to build the accessibility conditions for PM to become a reality for patients.

Through this piece of work, a shareable ‘expectations matrix’ was created to encourage mutual understanding and to inform ongoing efforts to accelerate the implementation of PM. The hope is that by contributing to a growing evidence base and greater awareness, better access to targeted medicine can be achieved in oncology and beyond. In 2021 30 in-depth interviews were completed, with five different stakeholder types represented.

Synapse - a dynamic digital network for PM collaboration

2021 saw the launch of Precision Medicine Synapse: A growing dynamic platform to enable better collaboration in PM.

The network began to grow organically, and it anchored FT3 outreach around specific disease ‘awareness months’ to drive awareness and facilitate interconnections among projects, organizations and initiatives working in the same field.

Synapse rapid growth in 2021 showcases the ecosystem’s need for systematic collaboration

53

experts

394

organizations

124

initiatives

160

events

329

resources mapped

What is Synapse

  • A global, interactive, and searchable platform that aims to showcase existing precision medicine initiatives and actors, to bring together people and projects, match solutions to resources, and solve specific needs in an efficient and sustainable way.
  • 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.
  • A tool to map the precision medicine landscape on various scales through different lenses, reduce duplication, and increase access to potential collaborations.
  • Stakeholder engagement to strengthen the influence network, enable us to deliver and to reinforce credibility
  • Strengthening FT3’s community by building engagement around key topics

Stakeholder engagement to strengthen the influence network, enable us to deliver and to reinforce credibility

In 2021, a Stakeholder Engagement Task Force was initiated following the recommendation of the Board members during the Board meeting in December 2020. The Task Force was mandated to prioritize stakeholder outreach, together with refining membership criteria for approval. This multi-stakeholder Task Force successfully delivered:

  • A six-month agile strategic outreach strategy to identify and approach appropriate experts who can complement the existing knowledge and experience of current working group members, to enhance and accelerate delivery in the three core pillars of FT3‘s program. This strategy was discussed, reviewed and approved during the Board Meeting in December 2021.
  • FT3 membership criteria, including the definition of the FT3 Community of Practice. This proposal was also discussed, reviewed and approved by the FT3 Board in December 2021.

Over 35 new connections made with organizations in 2021 to support FT3’s mission and grow our community of champions:

Strengthening FT3’s community by building engagement around key topics

Strengthening FT3’s community by building engagement around key topics

FT3 was active as part of eight key awareness days, gradually becoming a voice in the global conversation on PM topics:

8 events covered in 2021 so far

2021
February
June
August
September
November
empty
World Cancer Day Rare Disease Day
World Brain Tumor Day World Kidney Cancer Day
World Lung Cancer Day
Thyroid Cancer Awareness Month CUP World Awareness Week
Lung Cancer Awareness Month Precision Medicine Awareness Month
  • Amplifying existing awareness building initiatives and sharing different perspectives
  • Integration with Precision Medicine Synapse to bring together the PM community around interest areas
  • 6 editorial pieces published and various materials produced including visuals, banners and a video
  • 2,016 digital engagements*
*i.e. Likes, shares, comments, clicks, video views

Follow the FT3 activity across all our communication channels and share relevant news and updates within your network

Financial section

Turnover

66.900

Project Expenses

65.829

Partners

The Board

  • Andrea Ferris

    President and CEO, LUNGevity Foundation

  • Begoña Nafría Escalera

    Patient Engagement in Research Coordinator, Sant Joan de Déu Research Foundation

  • Dr. Ben Westphalen

    Comprehensive Cancer Center Munich

  • Durhane Wong-Rieger

    President, CORD

  • Geoffrey Cook

    Global Head External & Patient Advocacy, Novartis Oncology

  • Ivica Belina

    President, Koalicija udruga u zdravstvu (KUZ)

  • Judith Taylor

    Patient Representative (ePAG), Thyroid Cancer Alliance

  • Dr. Pooja Merchant

    Head Patient Partnerships and Engagement Oncology, Bayer

  • Ralph Riley

    Global Co-Diagnostics Market Access Leader, Janssen

  • Sandra Blum

    Senior Patient Partnership Director, PHC Oncology, Roche

  • Dr. Shirlene Badger

    Patient Advocacy Lead, Illumina

  • Sonia Ujupan

    Associate Director, International Corporate Affairs, Oncology, Lilly

  • Stefan Gijssels

    Executive Director, Digestive Cancers Europe

  • Susan McClure

    Founder/CEO Genome, Creative LLC

  • Tanya Knott

    Director, Sarah Jennifer Knott Foundation

The Team

  • Helena Harnik

    Programs Director

  • Nicholas Brooke

    CEO

  • Nicole Wicki

    Program Manager

  • Quentin Clermont

    Chief Operations Officer

  • Roxana Radu

    Communications Manager

  • Lise Brooke

    Growth Hacker

  • Silvia Bornengo

    Project Coordinator

  • Maximiliane Rauch

    Senior Project Coordinator

  • Laila Deeb

    Web Developer

  • Jeremy Jamar

    IT Architect

  • Danielle Barron

    Chief Editor, Motherhood Projects

  • Gary Finnegan

    Editor in Chief, Break Dengue

  • Ify Sargeant

    Scientific Editor