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
