Cancer will only be beaten when the genomic drivers of a person’s cancer are understood and targeted, according to Brian Tomlinson of Foundation Medicine
Tell me about yourself and your organization
Brian Tomlinson – Medicine Foundation
Foundation Medicine is a molecular information company dedicated to transforming cancer care through a deep understanding of the genomic changes that contribute to each patient’s unique cancer. The company offers a full suite of comprehensive genomic profiling assays to identify the molecular alterations in a patient’s cancer and match them with relevant targeted therapies, immunotherapies and clinical trials.
I joined Foundation Medicine after working for two national cancer patient advocacy Organizations for nearly 18 years. In my role at Foundation Medicine, I lead our external engagement efforts with our patient advocacy partners in the US.
What does personalized medicine mean to you?
Personalized medicine involves providing treatment based on the unique drivers of disease at a molecular level. In cancer, this starts with comprehensive genomic testing to understand what’s driving a patient’s cancer at a molecular level. This gives oncologists and patients the information they need to make informed treatment decisions.
We’re at a critical moment for precision medicine in cancer care. To me, it means finding the right treatment, for the right patient and the right time.
Why do you believe this topic is important?
I am motivated every day by the patients we serve now and the opportunity we have to impact cancer care in the future. Unfortunately, many patients right now do not have access to genomic testing. We have an opportunity to extend lives or even manage cancer as a chronic condition for certain patients today using these breakthrough therapies, but we can only do this when physicians understand the genomic drivers of a patients’ cancer.
As part of our efforts to expand access to genomic testing, we engage with advocacy groups and patients across indications to share scientific insights and serve as a resource on CGP with the goal of expanding overall education and awareness. I have dedicated my career to supporting cancer patients and their families. Having comprehensive testing provides access to really important information about treatment planning and shared decision making.
Why is your organization interested in participating in this multi-stakeholder collaboration? What has your organization been doing in this space?
We believe that transforming cancer care and ensuring all patients can benefit from precision medicine cannot be done alone, which is why we believe collaboration across the ecosystem is so critical. Over the past almost 10 years we’ve established deep partnerships with organizations across academia, industry, biopharma and advocacy.
What makes this collaboration unique?
I think the global focus and the comprehensive external stakeholder engagement make this collaboration a first of its kind and quite unique.
What are your ultimate expectations from the project?
We know expanding access to CGP is critical to increasing the number of patients who can benefit from precision medicine. We’re committed to working across the ecosystem to ensure all patients can benefit from the latest science at the time of care and that oncologists have the tools to make informed treatment decisions. We’re at a true turning point for precision medicine in many regions – including Europe. The healthcare ecosystem has made incredible progress in recent years but there is more work to be done.
Begonya Nafria Escalera of Sant Joan de Déu Children’s Hospital in Barcelona has both a professional and personal interest in ensuring that patients’ needs are met by personalized medicine
Tell me about yourself and your organization
Begonya Nafria Escalera – Sant Joan de Déu Research Foundation
I’m working at Sant Joan de Déu Children’s Hospital as Patient Engagement in Research Coordinator. My area of responsibility is to ensure that the patients and families have an active role, as experts, in any of the research and innovation projects in which our institution is involved. Sant Joan de Déu Children’s Hospital is the largest paediatric hospital in Spain. My background is in social sciences and working in the defence of the patients’ rights for more than 10 years. Also I have a personal story linked with my area of expertise, as I’m caregiver of an adult with cerebral palsy, my brother. In recent years I have also been volunteering with several patient organizations.
What does personalized medicine mean to you?
For me it means the opportunity to offer a treatment for a huge group of complex conditions, the genetic diseases. Most of these conditions affect paediatric patients and there is no cure for them, only in some cases palliative treatments. PM from the patient side means hope but also uncertainty. At this moment, few conditions have the opportunity of these innovative treatments, this means that we need to inform and educate the patients/families about this type of treatment, how it works and what it means to be involved in a clinical trial.
Why do you believe this topic is important?
Because research in new treatments is moving to this direction: try to provide the best and most accurate treatment for the patients. Society and specifically the patients/caregivers need also to move in this direction, knowing what a therapy means, when it works and also the status of research according to the different genetic conditions.
Why is your organization interested in participating in this multi-stakeholder collaboration?
We are increasing our activity in the field of clinical trials in paediatric conditions, as most of these diseases are genetic. For our patients this really can be an opportunity for treatment in the future, considering that probably at the present we don’t have therapeutic options to offer to them. In parallel, in our institution the research model is based on a patient-centric approach, ensuring that in any project in which our institution will be involved patients/families can take part as advisors and/or part of the research team. We have a young person’s advisory group helping in many projects, a board of parents, and according to the needs of every initiative we set up a specific group of patients/parents to help in the design and development of the project. We don’t envision clinical research without the involvement of patients and parents.
What makes this collaboration unique?
For me, it’s the 360 degree approach with a pillar being patient involvement and the issues that need to be addressed to ensure the best quality of life, disease management and empowerment. The activities around health literacy are essential to ensure that any initiative about personalized medicine will be patient-centric, providing patients with the right information to make decisions about their health and treatments.
What are your ultimate expectations from the project?
I am happy to contribute to a global initiative in which patient engagement will be an essential part of the framework, while increasing awareness about health literacy in this field and providing the expertise of working with paediatric patients. As clinical trials in children and young people are global, we need truly collaborative initiatives involving different stakeholders in order to provide the best treatments for the patients, always considering the unmet and specific needs of the most vulnerable groups of patients.
Making personalized healthcare an accessible reality for as many people as possible has been a priority for Sandra Blum of Roche’s Global Patient Partnership team for many years
Tell us more about yourself and your organization.
Sandra Blum – Roche
I am part of the Global Patient Partnership team at Roche. ‘Partnership’ is not just part of our name. It’s a mindset and way of doing things that is highly valued in our organization to develop solutions and medicines that truly meet the needs of individuals, communities and society. Personalized Healthcare is a major focus for Roche and it includes a shift from treating a disease to delivering better care.
What does personalized medicine mean to you?
To me it means that my doctor knows me and my history, and it’s ok if that information comes from a medical record that follows me around wherever I go in the healthcare system or even the world. Together we are able to use all of the available resources to understand my health issues – imaging, diagnostic blood or tissue tests, whatever will give us the best information to work with. Then we discuss and agree on the treatment option(s) that we think will do the most to address my health issues while also taking into account how I like to live my life. And we stay connected to monitor how things are going and make informed decisions about changing course if that’s what we need to do. Plus, all my data will be shared with the right doctor and there is the possibility of improving medical care for others by sharing anonymised data with researchers.
Why do you believe this topic is important?
Health and illness ultimately are very personal, both because of how we experience them but also because we have a growing scientific understanding of how unique diseases are at an individual level. Take cancer as an example. If I get breast cancer, it may be really different than my friend’s breast cancer because of my lifestyle, my body, and the specific ‘fingerprint’ or genetic characteristics of my cancer. In fact, now science is showing us that where a cancer starts – the breast, the colon, the lungs – is only part of the story. That ‘fingerprint’ or genetic make-up of the cancer may ultimately be a better way of understanding what’s driving it and finding the best way to treat it. I’m so passionate about this because it is personal for me, too: my mom died in her 50s of colon cancer. I still miss her pretty much every day. You never know if things could have turned out differently for mom if she had been diagnosed sooner or treated differently. We couldn’t save her but I do hope I can play a role in saving other people, and I think following the science to personalize cancer care, and healthcare in general, is the way forward.
Why is your organization interested in participating in this multi-stakeholder collaboration?
Our vision is to ensure that the screening, diagnosis, treatment and even prevention of diseases will more quickly and effectively transform the lives of people everywhere – ensuring the right treatment for the right patient at the right time.There has been amazing progress in personalizing healthcare over the last 20-plus years, but there is still so much further to go. And not just with research and new advances, but importantly in connecting people to what is available today but may be out of reach in their country or their community. No one can make that kind of change happen alone. We need to work together. FT3 Alliance is an exciting forum to partner with patients, medical experts, companies in biotech/biopharma and other organizations that all share a passion and commitment to making personalized medicine a reality for more people. Roche is so proud to be a FT3 member and collaborator.
What has Roche been doing in this space?
I mentioned that personalized healthcare is abig focus for Roche. We have been really busy working on this for years! Just a few examples… we are bringing together divisions across the Roche group (imaging, diagnostics, pharma) to create integrated solutions that provide personalized healthcare. We have developed digital monitoring tools to make it easier for people to capture and share their health data with their doctors and manage their health. We have a variety of clinical trials looking across cancer types using molecular profiling and targeted treatments as well as capturing real-world data to understand outcomes and inform health system decision-making. Much of what we do is in partnership not only with patients but also with stakeholders in the medical, policy and research communities to collectively create an environment that is ready to deliver personalized healthcare to patients.
What makes this collaboration unique?
FT3 Alliance is a global multi-stakeholder organization focused on personalized healthcare. We have a tremendous opportunity to bring people together from all around the world and from different disciplines to learn about what has been successful and what remains to be done. And because we’re a global network, we can partner with other regional or country-level organizations that are trying to do similar things, so that together we can move faster or do more.
What are your ultimate expectations from the project?
Roche wants to be a part of the change that needs to happen to make personalized healthcare an accessible reality for as many people as possible. Working together, FT3 Alliance has to move quickly beyond analysis, debate and idea generation and into actions that have an impact in countries and communities around the world.
Susan McClure, founder and CEO of Genome Creative, says that while clinical adoption of targeted treatments remains low, multi-stakeholder efforts such as FT3 can change this
Susan McClure – Genome Creative
Tell us more about your organization
We specialize in content strategy, editorial and design updates, event creation and management, websites, podcasts, apps, and marketing. Specifically, we work with partners who share our vision of educating people around how their treatment options are changing thanks to our increased understanding of our DNA. Our goal is to educate people around this exciting time in health care while dispelling myths, explaining the science, and encouraging further exploration.
Genome Creative specializes in creating compelling content that explains complicated topics in a language that everyone can understand. Our team of award-winning science writers and health care journalists are adept at covering this emerging field in a way that is engaging and accessible.
What does personalized medicine mean to you?
I’ve been leading consumer health media companies since 2003, after recovering from an aggressive form of breast cancer. I spent a decade as the publisher of CURE magazine. During my time there, I realized that treatment options were becoming more targeted but clinical adoption and consumer awareness remained low. I am on a mission to fix that.
I left CURE in late 2012 to launch the first national consumer magazine exclusively devoted to genomics. Genome magazine launched in 2014 with the mission of exploring the world of personalized medicine and the genomic revolution that makes it possible, empowering readers to make informed health decisions by improving their health literacy.
While doing research for the business plan, I was truly shocked to see how many treatments that are considered the “standard of care” for conditions like depression, cancer, and Alzheimer’s are ineffective for many patients. Can you imagine if the same standards applied to the auto industry for example? Just imagine how upset you’d be if you paid $70,000 for a car that only ran 25 to 30 percent of the time! We need to demand more of our health care system.
Why is your organization interested in participating in this multi-stakeholder collaboration? What has your organization been doing in this space?
While I am a huge advocate for personalized medicine, I understand the complexities that exist in terms of adoption. I believe that the only way to break down barriers is to bring together a diverse set of stakeholders who are committed to improving access to testing and targeted treatments for any patient who may benefit. My team already works with clients on communication strategies that educate patients about the ways testing and treatment for a variety of conditions are becoming more targeted. We also direct patients to useful resources so they are better equipped to have meaningful conversations with their HCPs about more personalized treatment options.
What makes this collaboration unique?
I believe that this is the first and only global coalition to address this issue by bringing patients, advocates, pharma and diagnostic companies, HCPs, payers, and regulators who will all work together to establish best practices to make personalized care accessible to all people.
What are your ultimate expectations from the project?
My hope is that no matter where a person lives in the world, when faced with a health challenge that could benefit from testing and treatments tailored to the unique characteristics of their disease, they will have easy access to education, information, and support that will enable them to make better health decisions with improved outcomes.
Danielle Barron speaks to FT3 board member Dr. Benedikt Westphalen, Head of Molecular Diagnostics and Therapy Program and the Molecular Tumour Board, Comprehensive Cancer Centre, University Munich, Germany
Dr Benedikt Westphalen is a medical oncologist and molecular biologist, focusing on gastrointestinal oncology and precision oncology. For the last four years, he has been building a precision oncology program at the University of Munich.
Oncology has been transformed in recent years by the concept of personalized medicine. Westphalen explains that, in his field, personalized medicine covers “multiple aspects”.
“The most comprehensive statement would be ‘the right treatment, for the patient at the right time’,” he says. “This covers all aspects from assessing the patient’s prevalence, working with a multidisciplinary team to design and discuss a personalized treatment plan to then realize this plan together with the patient.”
Unsurprisingly, Dr Westphalen is of the belief that personalized medicine should not be a “nice to have”, but rather an essential approach to patient care. In this setting, it is important “to have all necessary tools at hand” to offer patients the most comprehensive oncological care, Westphalen states.
“True personalized medicine, going beyond only focusing on certain aspects in the continuum of oncological care, should be the goal of every practicing oncologist to achieve the best outcome for every individual patient,” he states.
As a healthcare professional and research scientist, Westphalen practices personalized medicine every day. But he believes that the multi-stakeholder collaboration involved in the FT3 project will bring it to the next level.
“FT3 covers an important aspect in personalized medicine, namely the interplay between comprehensive biomarker testing and treatment decisions based on the individual profile of a patient’s tumor. Modern oncology increasingly depends on this interplay.”
Yet, there are still many roadblocks in place, which prevent caregivers from offering both modern tumor testing and innovative targeted agents to their patients. We can only overcome these roadblocks by working together in a dedicated team, he adds. To this end, he has great faith in the objectives of the FT3.
“This multi-stakeholder non-profit initiative has a strong focus on patients’ needs and strong backing within industry, this makes for a very good start to create sustainable projects and ultimately lasting value”.
While Dr Westphalen has been working in personalized medicine for a couple of years, he is still very excited about the potential of the FT3 project.
“I hope that we will be able to form a group of dedicated people, growing together with the aim to drive all aspects of precision oncology ultimately improving care for our patients.”
FT3 is unique in having patients as a fundamental and essential partner, says project member Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders
Tell us more about yourself.
Durhane Wong-Rieger – CORD
I am President & CEO of the Canadian Organization for Rare Disorders (CORD). As head of a global alliance of rare disease patient organizations in Canada, we are committed to improving the lives of all Canadian patients and families affected by rare diseases. CORD leads initiatives to change and implement policy, collaborate to improve healthcare infrastructure, services, and access; advocate on behalf of patients for interventions, including innovative medicines, devices, and supportive services and foster research. We also increase the capacity of the patient organizations to take an active role in advocacy and support through a variety of training programs and collaborative projects.
I am a psychologist by training and taught for about 20 years as a university professor before moving to full-time patient advocacy. I have two children born with rare conditions and a spouse with genetic heart disease and Parkinson’s Disease.
What does personalized medicine mean to you?
Personalized medicine is an “umbrella” concept that is inherent to rare diseases, whereby patients receive “targeted” care based on their individual diagnosis (disease, genetic/genomic profile, and lifestyle factors). The “rarer” the condition, the more challenging to get to a diagnosis but also the more critical to get it “precise” so the term “precision” healthcare is probably more applicable. It is more than just medicines and it may not be so much person-specific as targeted. Challenges exist on many levels, from system capacity, healthcare professional readiness, and patient awareness.
Why do you believe this topic is important as a patient advocate?
Raising awareness and educating patients about personalized medicine is essential to accessing what is available and advocating for what could and should be available. Obviously, the patient is key in terms of seeking access and increasing capacity and willingness (that is, resources).
Why is your organization interested in participating in this multi-stakeholder collaboration?
CORD, along with the international rare disease community, has been advancing models and centers for diagnosis, care, and treatment but also the development of innovative therapies (genetically defined and targeted). Our organization supports at the patient level development of patient registries to have patient populations available for clinical trials and to develop natural history studies as well as clinical trial design appropriate for “small, targeted” patient populations. Our organization has also been engaged in helping to define and collect patient outcome evidence, setting up access programs including new financing models for access, and promoting collaboration across all stakeholders so that innovations could be available as soon as possible but also cognizant of needs for sustainability (e.g., managed access, risk-sharing models, amortized financing).
What makes this collaboration unique?
FT3 is the first international collaboration where patients are not just equal partners but indeed an essential, fundamental partner. The patient voice and patient perspective are not just referenced but have primary status in terms of principles but also in decisions on how to proceed.
What are your ultimate expectations from the project?
The most important short-term expectation is that all stakeholders remain committed to the collaboration and the process; we must learn how to work together effectively. Other short-term expectations are the articulation of consensual vision, principles, desired outcomes and from this platform the definition of a working process for the collaborations that translate into meaningful actions. This is all very high level so more concretely, I expect we will identify some existing best practices and transformative initiatives that can be built upon and adapted. That means we need to continue to foster an open sharing environment and avoid competition and “me-first” thinking. I think we are on the right path to get there.
