‘I am on a mission to fix that’

‘I am on a mission to fix that’

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.

‘True personalized medicine should be the goal’

‘True personalized medicine should be the goal’

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.”

‘This is a unique collaboration’

‘This is a unique collaboration’

Tanya Knott, Director, SJK Foundation, spoke to Danielle Barron about her vision of personalized medicine and the personal tragedy that drives her to make it a reality.

Tanya Knott – Sarah Jennifer Knott Foundation

Tell us more about you 

I am the founder and director of the Sarah Jennifer Knott Foundation. I established the foundation with family and friends in 2016 following the death of my sister Sarah aged 31 from cancer of unknown primary also known as CUP. The aim of the foundation is to raise awareness, education and research into CUP. This is an unusual type of cancer where the patient presents with a secondary cancer but the origin of the cancer is unknown. If the primary is unknown, the treatment is unknown. In Ireland, cancer of unknown primary affects up to 400 patients annually. Approximately 3-5% of all cancers are cancer of unknown primary, making CUP the fourth most common cause of death from cancer worldwide. 

My background is in healthcare, I am a registered nurse and worked for many years in the pharmaceutical industry. Throughout Sarah’s illness I realized the huge gap in care for patients like Sarah with CUP and armed with this knowledge I set up the foundation in an effort to address the unmet needs for patients diagnosed with this devastating illness.

What does personalized medicine mean to you?

In the future, where the cancer began will not be the treatment priority, and instead treatment will be tailored to the unique genetic make up found by genomic profiling. Enabling targeted treatment options specific to the individual patients needs. For patients with cancer of unknown primary and unusual cancers, genetic profiling offers a vital opportunity for targeted treatment. Studies have shown that relevant mutations are observed in 30-85% of patients with cancer of unknown primary. Genomic profiling is opening up access to clinical trials and access to revolutionary new treatments; unfortunately, despite these benefits, the transition to personalized medicine is slow.

Why do you believe this topic is important?

I believe access to personalized medicine is vital as it has the potential to transform patient’s lives, especially for patients with limited treatment options. Personalized medicine is a rapidly evolving field, with more and more targeted treatments available, but without the diagnostic profiling some of these therapies are not being considered for patients where they could be of huge benefit.

So much has changed since Sarah was ill, that if she was alive today there is a high chance that through genomic profiling an actionable mutation may have been found and she could have lived longer with controlled disease and many more treatment options.

Why is your organization interested in participating in this multi-stakeholder collaboration? 

SJK are honored to be founding members of this multi-stakeholder collaboration. One of our main objectives at SJK is to advocate for access to genomic profiling for all those who need it. Our goal is completely aligned with this global project. I quickly realized that to ensure patient access to genomic profiling I would need to be a part of something bigger! The barriers are so great and diverse it needs a multi-stakeholder collaboration to understand and overcome all the many obstacles. Through the multi-stakeholder approach we have the solutions to the barriers, we know where to focus for change.

The patient benefit is that they are given the option. Personalized medicine may not be an option for all patients, but to have the opportunity to be fully informed and to have the opportunity to discuss and understand the option with their HCP is a great benefit. Patients can also benefit from more accurate diagnoses, targeted treatments, with greater survival than perhaps their current treatment and with potentially less side effects. Patients can benefit from access to clinical trials and patients and their families can benefit from preventing hereditary cancers.

What makes this collaboration unique?

This is a unique collaboration as it is bringing together all the multi-stakeholders required to make personalized medicine a reality. As a global initiative, we can learn from best practices in countries and share these learnings with other countries. All stakeholders come with their expertise, the drive to overcome the obstacles, identify the solutions and implement the changes needed.


‘No two people are the same’

‘No two people are the same’

President of Lung Cancer Europe and molecular biologist, Dr. Anne-Marie Baird says personalized medicine should mean the best medicine, care, and support for people on an individualized basis

Tell us more about yourself?

Anne-Marie Baird – Lung Cancer Europe

I am a molecular biologist and have worked extensively on mesothelioma and lung cancer, with research interests in inflammation, the metastatic cascade, drug resistance, and disease biomarkers. I am currently a Senior Research Fellow in Trinity College Dublin, Ireland. Outside of that, I have been active in the lung cancer advocacy space since 2012 and was elected as the president of Lung Cancer Europe (LuCE) in May 2020, having served as a board member for two years. LuCE is a non-profit umbrella organization with over 30 members from more than 20 European countries. LuCE aims to be the voice of people impacted by lung cancer at a European level, advocating for improvements in lung cancer diagnostics, treatment, and care. Everything we do centers on our three core pillars of awareness, education, and advocacy. I also serve on the European Cancer Organisation Patient Advisory Committee and several other scientific and advocacy committees. 

What does personalized medicine mean to you?

To me, this is a dynamic and wide-ranging term. I believe that it should translate as the best medicine, care, and support for people on an individualized basis, which changes as needed throughout the entire care pathway. It is a term that has been used so widely that we need to remind ourselves that this idea of ‘personalized medicine’ is not a reality for everyone impacted by cancer. 

Why do you believe this topic is important? Do you have a personal angle?

Just as no two tumors are the same, no two people are the same. Therefore, it is important to find out as much about the person and their tumor as possible in order to provide the absolute best care.  

Why is your organization interested in participating in this multi-stakeholder collaboration? 

Lung cancer is a complex heterogeneous disease, therefore it is crucial that people know as much about their tumor type as possible, as this will help to identify the best possible care. There is so much information out there that it can be difficult to wade through it and find accurate quality information. We believe that being part of this larger community will make it easier to map what already exists, identify gaps, and design solutions to fill those gaps. It will also provide a platform to share best practices with other groups as we move toward more tumor agnostic therapies in the future. 

What has Lung Cancer Europe been doing in this space?

In LuCE, we have co-created molecularly targeted information with other stakeholders in the field. We have also improved education and awareness through on-line activities, webinars, and our education program. In February of last year, we launched a paper that examined lung cancer care in Europe. The research identified disparities in access to testing and innovative therapies across and within European countries, and also found that many people do not know if their tumor had been tested or if any alterations were found. 

What makes this collaboration unique?

This collaboration is unique in that it combines many different groups from all over the globe, with multiple parallel project strands. It has also built from the beginning with patients, with co-creation at its core. 

What are your ultimate expectations from the project?

To provide graspable tools that will have an impact on the real-world experience of patients.