Membership growth and building the foundation
Despite being a new program, FT3 successfully confirmed a total of 19 Founding Members in 2020,
representing organizations across the patient, medical, pharma and diagnostic communities. Having
such a wide breadth of experience and expertise is crucial as FT3 embarks on its mission, and in
2021 this effort to ensure multistakeholder representativeness will continue.
9 new relationships (since March 2020)
A multi-stakeholder working group was convened to establish a governance structure. Reflecting the
shared desire for FT3 to be a patient-led initiative, a decision was made to cap the participation
of industry in the Board at 40%, and to enforce a minimum of 40% representation by the patient
community. The first Board and Executive Committee were identified, and the first Board meeting took
place in December 2020.
Co-developed governance continues to be fine-tuned with your input
Devising a concrete strategy with tangible actions and outcomes was the product of intense collaboration with our partners. A pragmatic and informed consensus was needed as we attempted to articulate the strategic areas most in need of our attention and focus.
One on one intake calls with members informed multi stakeholder survey, reflecting 5 different stakeholder perspectives, to prioritize the most important areas of activity based on their importance in making PM the new normal as well as the potential impact FT3 could have. This iterative process of co-creation will be repeated as we continue our work and the working groups begin to formalise and develop their outputs.
24 Intake calls and multi-stakeholder survey to co-create strategic focus & prioritize
As a result of this iterative process, the overall strategic approach was defined and approved in the first board meeting, in December 2020.
Co-creation working groups were established to define priority activities and deliverables. By the end of 2020, working group contributors numbered 48 in total, representing 27 organizations.
Patient/ patient organization representatives
Understanding the PM ecosystem to inform FT3 activities
Understanding the current PM ecosystem as well as patients’ needs sits at the core of FT3. For this purpose, an initial landscape analysis was performed, becoming the baseline of the FT3 activities development:
- 215+ key initiatives and people in the PM landscape
- 28 countries and regions
- High diversity of stakeholder groups who are crucial players in PM leading to a highly complex landscape and fragmentation
- Many multidisciplinary initiatives focusing on data and policy and research shows an opportunity for FT3 to take the role of an aggregator & accelerator of existing activities
- Identified initiatives such as Data Saves Lives are inspiring and guiding discussions in working groups; e.g. showing willingness of patients to share data, as trust for sharing data is a crucial factor in enabling the generation of evidence for PM. Further, without the right data, access and reimbursement cannot be addressed fully.
But the question of what PM meant for the everyday reality of patients was still standing. uniquely designed workshop at the Patient Engagement Open Forum aimed to understand the information and support needs of the patient community (and other stakeholders) in order to make informed decisions around PM at various points in time. More information can be found here.
Example: Datavant resource showing complexity of healthcare data ecosystem in the US
Understanding patient needs in precision medicine
Patient Engagement Open Forum
220 patient support and information needs across 5 aspects of PM identified through a brainstorming workshop
- “How do I know if I am at a higher risk to get cancer?”
- “What tests are available in my country/hospital?”
“Understanding test results”
- “Who can I talk to that has been through this experience?”
- “What targeted treatments are available?”
“Finding out about clinical trials”
- “Managing anxiety”
“Monitoring long-term side effects”
I would not be alive today without molecular testing and targeted therapies, all the patients should have this chance.
- Leslie Manot shared her unique journey with ROS-1 NSCLC,
emphasizing the patient experience
Building awareness and conditions for better access
In 2020 an important focus was on establishing and developing relationships with important stakeholders and initiatives in precision medicine, to reduce duplication of effort and to accelerate the creation of more sustainable solutions.
Collaboration explored with the Precision Cancer Consortium, an industry-led project to increase patient access to CGP and tailored interventions
New contacts & introductions with diverse stakeholders
One starting point was to understand existing PM resources. A mapping exercise was undertaken to understand how the information needs of patients, as identified in the Patient Engagement Open Forum, are met byby existing resources:
Over 122 PM resources mapped, developed by 74 different organizations; 13 therapeutic areas covered (plus pan-cancer and disease agnostic);
Online research and public resources shared by partners;
Learning from existing resources to optimize future efforts
Opportunities and gaps for patient education and awareness
- Key patient needs identified at the PE Open Forum are not adequately addressed by existing resources, such as understanding diagnosis and prognosis, monitoring, relapse, testing at relapse, finding psychosocial support.
- Similar needs across geographies and conditions
- Resources are not easily adaptable to local contexts
Examining best practices and aspects that drive effective education
Format (PDF, video, etc.)
Toolkits, Decision tools, Patient Guides
E.g. Straight Into Cancer OncoSniper
, Alivia Foundation: search engine that provides biomarkers, related testing and approved targeted treatments per indication