Monday, November 28, 2016

Are We Ready For The Next Giant Leap?



I recently attended an event in Boston organized by Elsevier called “The Next Giant Leap” that brought together oncology experts to talk about cancer research and the goals of the White House Cancer Moonshot initiative. The event featured a panel of experts, each approaching cancer research and care from a different perspective, and was centered on the President’s Cancer Panel Report (the Report).  The panel discussed improving access to clinical trials, the impact of data sharing on patients and care providers, and how to break down silos and improve collaboration across all sectors.


 
The theme of the Report was how to improve cancer-related outcomes with connected health. This is an ambitious undertaking: how can we use technology to promote cancer prevention, enhance the experience of cancer care for patients and providers, and accelerate progress in cancer research. As the #CancerResearchEvangelist and a patient advocate, my personal interest in attending was to learn more about how patients can get access to clinical trials and how research can bring more targeted therapy - #PrecisionMedicine - to patients. I’m a strong proponent of the #CancerMoonshot program and its aim "to make a decade worth of advances in cancer prevention, diagnosis and treatment in five years." When I met Vice President Joe Biden last year, I was struck by his sincerity and determination.  I applaud Elsevier for bringing together experts to be a part of the national conversation about cancer research and hope that we will see more of these events in the future.
Most will agree that cancer is an area of healthcare that can benefit from improved coordination, communication, and access to information – sharing and integrating data can expedite scientific discovery and more effectively prevent, research and treat cancers. However, according to the Report, “technical, financial, policy, and cultural barriers have precluded optimal development and use of connected health technologies for cancer.” My big questions are how do we break down the silos and facilitate the true collaboration and sharing of data to help advance research. Unprecedented amounts of data about cancer patients are being collected in medical records, in research studies, and by individuals themselves. Traditionally this data remained wherever they were collected and generally were used in limited ways only to serve the specific needs of whoever collected them. All of these silos represent a significant missed opportunity. Connected health technologies have an important role to play by facilitating the linking of data sets and creating tools that enable researchers, clinicians, and patients to use data in meaningful ways. To achieve the development of a national infrastructure to support sharing cancer data, technical and logistical challenges to data integration must be overcome, and the cancer community must foster a culture of collaboration that encourages data sharing and free exchange of ideas. Of course, patient privacy and security of data continue to be issues of concern that must be addressed to facilitate true data sharing and collaboration. I also believe that the government and cancer organizations must balance competition with the goal to make the next big discovery to help patients. The President’s Cancer Panel urges all stakeholders - health IT companies, healthcare providers, researchers, government agencies, and patients - to collaborate in using connected health to improve the experience of cancer care for patients and providers.
Access to Clinical Trials
Clinical trials are essential for advancing knowledge about cancer and for developing better, more targeted treatments for cancer. However, in the U.S. patient participation remains one of the biggest challenges to their success (estimated at less than 5% participation in trials). Although surveys show that patients would be willing to participate in clinical trials if available, many obstacles continue to prevent  more broader enrollment – primarily patients not being aware of availability, difficulty determining if they are eligible, and lack of provider referral. The President’s Cancer Panel has identified the tremendous potential of connected health to expand access to clinical trials. A clear role has emerged for online tools – and with social media – to quickly and broadly mobilize communities to participate. In fact many non-profits, advocacy groups and pharmaceutical companies are using social networks like Twitter and Facebook to connect with patients. However, the amount of information and complexity of trial eligibility can be daunting for patients. And matching a patient to specific clinical trial criteria often requires access to the patient’s disease profile (diagnosis, type and stage of tumor, etc.). The Elsevier panel discussion on trials focused on the need for education, patient stories, incentives and the involvement of patient communities (i.e.: the ovarian cancer community of patients connecting to share their experiences).
Next-generation resources that help facilitate the ability for cancer patients to be matched to a clinical trial based on their profile have the ability to transform the way we currently enroll patients. The goal is for these tools to facilitate automated clinical trial matching based on each patient’s personal disease profile. It is my hope that this will also increase the participation beyond the current 5%, and help lead to faster discoveries and ultimately cures. The President’s Cancer Panel Report highlighted one such next-generation online resource for clinical trial matching – The Cure Forward Clinical Trial Exchange. Rather than searching for trials themselves, patients can create their own personal profiles. Based on the molecular testing information and trial preferences provided by the patient, trial recruiters can review this information and contact patients who may be eligible for a given trial. If a patient hasn’t already had molecular testing done, Cure Forward can recommend and direct patients to laboratories that can do the testing. And, as recommended by the Elsevier panel, education and connecting with other similar patients is also an integral part of the process. Cure Forward can connect patients with cancer professionals, called Patient Guides that can help them personally navigate the clinical trial process. 
I’m grateful to Elsevier for inviting me to The Next Giant Leap event in Boston, and for the cancer expert panel for their insights. We truly are all in this together.
#CancerResearchEvangelist

Tuesday, November 8, 2016

Cancer Research Evangelism and The Power of NOW


I am building momentum in my role as the Cancer Research Evangelist - with the help of many amazing people. This is not in the religious sense, not preaching about the gospel. No, another meaning for evangelist is “a zealous advocate of something”. Years ago, Guy Kawasaki became the Chief Evangelist at Apple, and popularized the word evangelist in marketing the Macintosh for Apple and the concept of evangelist marketing. In 2006 he wrote about the art of evangelism, and even today it resonates with me because its tenets are perfectly suited for advocating for cancer research. I’ve been writing for months about the need for someone to tenaciously advocate, or “evangelize” about supporting scientists that have to spend 75% of their time fundraising. I was at the CANCERx conference recently and heard Dr. Phil Sharp from MIT reinforce the importance of basic cancer research, and how the NIH needs to lead the way.

With this in mind, I’m looking forward to speaking at Jeff Pulver’s next conference, the #140Conf, “State of NOW” on November 14th in Los Angeles. Jeff is a VoIP pioneer, communications visionary, and connector. I met Jeff last year at the Gratitude and Trust conference he co-hosted in NYC, and am a believer in his vision for real time web communication. Since June 2009, Jeff has brought together people from many different backgrounds, from all over the world to share their stories. He calls it “The State of NOW Experience”.  In Jeff’s words, “these conferences provide a platform for people to listen, connect, share, and engage with each other, while collectively exploring the effects of the real-time web on business and in their personal lives.”

I am so grateful for the opportunity to speak at the conference about how I became the Cancer Research Evangelist and why it matters. I’ll talk about how the real time Internet has helped me connect with an amazing community of people who share my passion for supporting cancer research. I call it surrounding myself with good people. People that care.

#Gratitude