The Synergist Annual Report

Intro from the Programme Manager

Moving from incubation to a shared operational program

Precision medicine (PM) can change patients’ lives, but its potential benefits have not yet been fully realized. Many challenges exist, from a lack of awareness to lack of access and evidence. The rapid advancement in this field coupled with the inherent complexity of PM has resulted in a fragmented landscape with stakeholders operating in silos, making it difficult to identify sustainable solutions based on real learnings.

The effects are felt at the patient level, but there is also a broader health, social and economic impact. Having recognized the need to tackle this issue, a discussion group to form an alliance was kick-started in 2018. While important progress was made in the subsequent two years, an incubator was missing that would operationalize the program and rekindle the initial momentum.

Since March 2020, the From Testing to Targeted Treatments (FT3) program has been establishing a common rationale and building a shared program, focusing on empowering the organization with the mandate, infrastructure and resources to synergize and bring together the PM landscape. FT3 is an independent, non profit global coalition with the shared goal to make targeted medicine an accessible reality for all patients who could benefit from it.

In just 10 months, FT3 has evolved from concept to a co-created, operational program, despite these unprecedented and challenging times. The membership has grown to 19 Founding Members, and 6 working groups were brought together to prioritize initial activities and to develop a work plan, involving a total of 46 people across 26 different organizations. FT3 was also a strong presence at the 2020 Patient Engagement Open Forum, which successfully identified over 220 patient needs in precision medicine throughout the patient journey.

This achievement is the result of the dedication and motivation of the program members and collaborators and to their joint commitment to ensuring that all patients can have access to the right testing & treatment at the right time.

The first Board meeting was held on December 15th, 2020. Board members had the opportunity to discuss key strategic topics, including the high-level work plan for 2021, and how to ensure multistakeholder representativeness. During the meeting, the Board unanimously agreed on the high-level direction of the program strategy, empowering the FT3 team to continue in this direction.

Helena Harnik

Synergist Programs Director

2020 Achievements

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.

Existing contacts

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

Strategy co-creation

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.

48

Participants, representing

27

Organizations, in

3

Working Groups

28

Industry representatives

18

Patient/ patient organization representatives

2

Medical community

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

RISK: “How do I know if I am at a higher risk to get cancer?”

DIAGNOSIS: “What tests are available in my country/hospital?”
“Understanding test results”

PROGNOSIS: “Who can I talk to that has been through this experience?”

TREATMENT: “What targeted treatments are available?”
“Finding out about clinical trials”

MONITORING: “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

86
Attendees

50%
Patient
Community

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;
Language: English.

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

Resource Adaptability:

Language

Disease specific/agnostic

Format (PDF, video, etc.)

Geography

Resource Type:

Toolkits, Decision tools, Patient Guides

E.g. Cancer Immunotherapy and Immuno-Oncology: A Guide for Patients, ECPC: accessible in 7 different languages

E.g. Straight Into Cancer OncoSniper, Alivia Foundation: search engine that provides biomarkers, related testing and approved targeted treatments per indication

E.g. Patient’s Guide to Comprehensive Genomic ProfilingA, Foundation Medicine: patient guide in lay language

E.g. of Unknown Primary, A series of Decision Aids for patients, their families and carers, SJK Foundation: Decision aids for patients and carers

Quotes from partners

Personalized medicine should be guided by the basic idea of treating the patient, not the disease.

: President, Coalition of Associations in Healthcare of Croatia (KUZ); Ivica BelinaPresident

We are in the transition era. As patient advocates, we have a responsibility to ensure patients can access and understand this ever-evolving information and be fully informed when making decisions on their care and treatment. Knowledge is power.

: Director, Sarah Jennifer Knott Foundation; Tanya Knott

Personalized medicine is more than just prescribing patients with genetically matched medicines but it represents, and requires, nothing less than a wholescale culture shift, especially in terms of the role of the patients in determining desired outcomes, participating in informed treatment choices, and actively monitoring use and real-world effects.

: President, Canadian Organization for Rare Disorders (CORD); Durhane-Wong-Rieger

As providers and advocates, we have a duty to accelerate and deliver the right treatment to the right patient at the right time. We are certain that our end goal is to save lives or help individuals to live with cancer; the quickest way to do this is to act in unison and with one voice.