Acting as a global accelerator, FT3 identifies and highlights learnings and good practices in the broader community and uses this knowledge to co-create practical and easily-adaptable tools and solutions to broaden patient access to PM at the local level. This work is driven by a dynamic and growing multi-stakeholder community of over 26 members and 137 contributors.
In 2022 the community continued to deliver co-created tools that support our educational efforts, such as the Access Barrier Cause-Effect Canvas and the Q&A Resource Biomarker testing for cancer, alongside approaches to better understand patient experiences at the care level to inform the use of Patient Experience Data, and new advocacy tools for PM champions such as the “Story of PM” platform. Moreover, the community continued to grow the Precision Medicine Synapse ecosystem with valuable resources from the wider PM community. We also submitted two publications that will hopefully be available for the wider PM ecosystem in early 2023.
We also submitted two publications that will hopefully be available for the wider PM ecosystem in early 2023.
The FT3 Country Pilots initiative also started in 2022. An important initiative for FT3, these “local partnerships for precision medicine” aim to build on the experiences of the global community to better understand local challenges in access, and to test and share learnings of approaches that could increase access to PM in different country contexts.
An important priority in 2022 was co-creating an enhanced 2027 strategy based on close collaboration with FT3 members and input from the multi-stakeholder FT3 community of practice and beyond. A robust strategy will enable the program to shift to the next level in terms of maturity and impact. The approval of the strategy by the Board highlights the high degree of continued alignment and commitment among Board members.
FT3 Vision: Precision medicine is accessible to all patients who could benefit from it
FT3 owes its success to its Members, who bring rich insights into the patient experience, challenges and learnings across different country contexts, and support the wider dissemination of the FT3 frameworks and resources. In 2022, FT3 welcomed six new member organizations, including Colorectal Cancer Canada, Merel’s Wereld, International Cancer Advocacy Network (ICAN), Blueprint Medicines, Takeda, Association of Community Cancer Centers (ACCC), and MSD. Moreover, and five new Board members were elelected, including (Nicole Sheahan, (GCCA) and James Creeden (Independent Expert), whose terms began at the start of the year, and Dr. Charles Alessi, (Independent Expert), Barry Stein (Colorectal Cancer Canada), and Lee-Anne Zinetti, (Novartis) who were elected to the Board at the end of the year. In addition, FT3 joined The Union for International Cancer Control (UICC) as a member.
FT3’s main focus areas for 2023 include the new Country Pilot program, multi-stakeholder discussions to identify what level of “evidence” is needed by different stakeholders to make PM an accessible reality, amplifying best practices in provider-patient communications, and supporting HCPs’ genomic confidence by accelerating efforts to improve the usability of biomarker test reports. All of these will continue to reinforce FT3’s role as a convenor and amplifier of best practices in improving access to PM for all patients who could benefit.
The country pilots are a key strategic workstream in FT3. The goals are:
Scope (TBC): Adress low levels of awareness of NGS/CGP testing among patients through adapted materials that are easy to digest and meet the patients where they are, fot patients who could benefit in Hungary
Erika Pataki
Public Health Expert
Dr. Zsuzsanna Orosz
University of Debrecen
Dr. Eszter Czibula
National Koranyi Institute of Pulmonology
Flora Bery-Junusko
Roche
Kerstin Ebel
Roche
Andrea Cszászár
Roche
Jeanie Hsieh
MSD
Gabor Popp
Amgen
Éva Balogh
MSD
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Dean Werner
MSD
Helena Harnik
FT3
Silvia Bornengo
FT3
Scope (TBC): Support advocacy efforts to reduce inequalities in access by mapping access to biomarker testing per autonomous community to target politicians & managers, and support patient awareness & education about biomarker testing and precision medicine in Spain
Cristian Perez
Takeda
Belén Gimeno
AEACaP
Laura Gutierrez Nicuesa
Amgen
Diego Villalón García
Fundación MÁS QUE IDEAS
Bernard Gaspar
AEACaP
Vincent Raske
Associate Program Manager
Maximiliane Rauch
Program Manager
Lidewij Eva Vat
Program Director
Scope (TBC): Promote awareness and education of testing especially among underserved and hard-to-reach patient communities in Canada (to start with Ontario)
We thank the pilot task force members who are providing rich expertise and experiences to shape and guide this piloting program.
Amy Moore
LUNGevity
Anne-Marie Baird
Lung Cancer Europe
Marcia K. Horn
ICAN
Dr. Leigh Boehmer
ACCC
Jeanie Hsieh
MSD
Sandra Blum
Roche
Lisa Cruz
Takeda
Tugba Camli Canturk
Amgen
An essential dimension of FT3’s 2022 strategy was supporting data and evidence development to demonstrate benefits of PM on patient outcomes, as well efforts to put in place a data governance structure.
A first focus point was building on patient experiences that can accelerate efforts to address structural & care-level barriers to PM.
Creating a repository of patient “lived experiences” in PM. Then extrapolating barriers, individual and collective learnings in the patient pathway, which will inform patients, HCPs and decision makers of good care practices.
What’s next?
Working on the stories’ actionability, through case studies to drive change on different levels
Accelerating efforts to address care level barriers to PM along the entire patient pathway by creating a repository of resources that inform the understanding, interpretation, and issuing of biomarker test reports. Analysis and validation of learnings then forming the basis for further ensuring streamlining and comprehensive exploration of biomarker test reports in clinical practice.
Gaps in data education and guidance around biomarker test reports were identified and validated. 50+ educational & guidance resources biomarker test reporting have been mapped.
Preliminary learnings include:
What’s next?
Patient-centered guiding principles are now in development.
Since the inception of FT3, the members always place a high priority on learning 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 thus acts as a catalyst for best practices - we aggregate them and build on them through multi-stakeholder collaboration. The results are made freely available to help reduce the burden of developing new resources or making updates to existing ones.
The whole collaborative process moved forward efficiently based on the precise aim of supporting patient organizations. This resource really helps our organization in our mission of informing and thus empowering patients
Marianna Vitaloni
DiCE. Impact interview available here
We don’t have that level of expertise to start the process of developing a resource like that.. It has saved us an incredible amount of money and the collaboration has been hugely successful. It was a godsend - 80% of the work was already done for us. It’s no lie to say we wouldn't have this resource today if it was not for FT3.
Debra Montague
ALK + UK. Impact interview available here.
If in 2021 we focused on developing and launching a number of educational resources - such as the Patient Information Needs Map, the Questions & Answers Resource Builder, or the Canvas to identify access barriers and solutions, the Biomarker for testing resources for cancer in 2022 we focused on adapting and piloting these, as well as on answering new needs coming from the community.
Adaptable resources to accelerate efforts in addressing care level barriers to PM by increasing patient awareness and education of PM & supporting shared and informed decision-making between patients and providers
Creating the right culture for change through storytelling that
Improving shared decision making in precision medicine clinical care by amplifying best practices in provider - patient communications & supporting the empowerment of patients in their clinical care
Development of The Biomarker Testing for Cancer Treatment adaptable resource
The topic has been discussed in the “ Shared Clinical Decision Making in Precision Medicine - The societal value of shared decision making with Precision Medicine as an example, and overcoming ethical challenges of open dialogue between healthcare professionals and patients” session, that attracted 93 XX participants. A diverse panel to convey the importance of open dialogue and patient empowerment in precision medicine clinical care has been engaged:
Speakers here:
Merel Hennink
Lung Cancer Patient and Patient Advocate - Founder of Merels Wereld, The Netherlands
Luciana Holtz de C. Barros
Founder & President of Oncoguía, Brazil
Rod Padua
President of Touched By Max Philippines
Marius Geanta
Co-founder & President of Centre for Innovation in Medicine, Romania
Moderated by:
Helena Harnik
Executive Director, FT3
As part of a pilot on colorectal cancer between DiCE, CCC and GCCA, the Q&A was adapted with DiCE and made available in English, Spanish and French
The beta version of the “Story of PM” launched in the beginning of 2023 and is now available for you to review and use.
Launch of co-created resources to support patient advocates and patient organizations in helping patients find the right information and make informed decisions and actions at the right time when it comes to biomarker testing.
This resource has already been piloted and adapted to lung cancer in partnership with ALK+ UK.
The resource is:
Targeted Cancer Therapy Adaptable Resource to be launched in 2023. It is based on 80+ resources consulted out of 300+ mapped on Synapse
Our membership clearly spoke their mind - evidence-based PM being accepted by decision makers and accessible to patients who could benefit from it, is a clear program priority. And it has been since its inception. Given the global diversity of our health systems, it’s a massive undertaking, but a key one if we want PM to truly be available to everyone who can benefit from it.
A common understanding of the value of PM, addressing structural barriers to PM across countries with different levels of PM availability, as well as responsible data collection to demonstrate the impact of PM are but a few of our key priorities.
Advancing the work on “Country & Condition cards”, to accelerate efforts in addressing structural & care-level barriers to PM by
Utilizing the access barrier cause effect canvas to address structural & care-level barriers to PM in various contexts
FT3 has submitted a scientific publication for review in November 2022. Results coming out soon.
In partnership with PFMD, FT3 held an interactive session with the Alliance and Partnerships for Patient Innovation and Solutions (APPIS) Initiative. We presented the Access Barrier Cause Effect Canvas to a global audience of patients and other stakeholders, mainly from the Asia Pacific region. The session and the tool were translated into Japanese and Mandarin/Chinese.
Running a multi-stakeholder qualitative research, identifying and sharing different stakeholder expectations of PM to enable alignment of perspectives, including the “what’s in it for me” aspect, thus enabling the right culture & readiness for change.
Now available:
These materials clearly illustrate which PM tests and/or therapies are available in a particular jurisdiction, helping patients and champions know what they can advocate for.
Coming soon: country agnostic thyroid cancer card, Brazil Country Card and cards for the FT3 Country Pilots.
Precision Medicine Synapse supports the creation of a unified and accelerated PM ecosystem.
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.
Synapse steadily grew its network over the past 12 months and, by January 2023, included:
222
Experts
578
Organizations
129
Initiatives
190
Events
872
Resources
Work continued on building our advanced PM resources for patient advocates, with over 160 resources added on Synapse. This includes more than 40 educational & guidance resources in biomarker test report data education.
Explore SynapseTo reduce fragmentation in the PM landscape, you can now find a landing page for our adaptable resources on PM
Condition-specific landing pages that compile global information around different condition
As part of our Ukraine response, we have mapped 50+ resources, cancer care & rare disease facilities that correspond to/can also be found on PM Synapse - contact us for adding to PM resources that can be beneficial for Ukrainian refugees
14 events in 2022 and opportunities emerging for 2023
January
Festival of Genomics and Biodata multi-stakeholder panel reached over 7000 participants
March
Toolkit for precision medicine champions presented at Amgen Global Advocacy Network learning session FT3 at DIA Europe
August
September
Early October
Piloting the Access Barrier Cause-Effect Canvas at the Patient Engagement Open Forum
Late October
FT3 at UICC World Cancer Congress
FT3 presented to PHC Onco Council
November
2023
FT3 at UICC World Cancer Congress
Session accepted at DIA Europe 2023 on capturing effective evidence to support regulatory decision making
Building an engaged online community around FT3
+236% of engagement on social compared to previous period (Jan-May 2022 vs. June-Oct 2022) including mentions, repost and comments
Building visibility for the work of the FT3 community
Increasing the impact & adoption of the FT3 outcomes
Aligning with other initiatives and platforms to build strategic relationships and develop expertise
892 000
Turnover
888 770
Project expenses
Nicholas Brooke
Executive Director
Helena Harnik
Synergist Programs Director
Jean-Christophe Capelle
Financial Director
Roxana Radu
Communications Manager
Nicole Wicki
Program Director
Silvia Bornengo
Program Manager
Lidewij Eva Vat
Program Director
Vincent Raske
Associate Program Manager
Lise Brooke
Product Owner & Communication Manager
Adeola Aderemi
Communication Manager
Maximiliane Rauch
Program Manager
Danielle Barron
Editor in Chief