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FEATURE
Better understanding cancer patients’ needs
How communications focused on science and innovation can better
serve and respond to patient voices.
By Jill Dosik
T
he 2016 Patient Access and Engagement Report, a landmark study conducted by CancerCare, reveals a
number of surprising and unsettling facts
about the experiences of people living with
cancer. CancerCare is a national non-profit
organization that provides free professional
counseling, education programs, financial
assistance and practical help to people with
cancer, their loved ones and the bereaved.
“Cancer takes its toll in many ways, some of
which last for years and cause debilitating
distress for patients and families,” explained
Patricia J. Goldsmith, CancerCare Chief Executive Officer, in a press release announcing the report. “This report, reflecting the
input of thousands of patients, sheds light
on the important issues affecting patients’
lives during and beyond a cancer diagnosis.”
I recently had the pleasure of co-presenting “Providing Value to Cancer Patients
Based on an In-Depth Understanding of
Their Needs” with Ms. Goldsmith at the ExL
Pharma Public Relations & Communications Summit in New York City. My presentation built on several findings in the report
and focused on how healthcare communications can provide value in two specific
areas: addressing low levels of awareness
about cancer clinical trials; and facilitating
the incorporation and dissemination of patient-reported outcomes into clinical practice and cancer research.
There’s no question that we live in an age
of tremendous innovation in understanding
the biology of cancer and developing transformative therapies. There are more than
17,000 open cancer clinical trials on clinicaltrials.gov and, according to PhRMA, more
than 800 anti-cancer drugs currently under
investigation. However, there is a staggering
disconnect. Despite the number of ongoing
trials, only three to six percent of adult cancer patients are participating in trials and 90
percent of these studies are delayed due to
slow enrollment.
There are several reasons for this. Studies
are more complex in terms of eligibility criteria: as treatments become more targeted,
some trials must find patients with particular molecular and genetic characteristics.
Patient perceptions about clinical trials —
sometimes faulty, sometimes more accurate,
are another barrier. For instance, patients
may opt out of participating in a trial over
the fear that they could receive a placebo.
This is a myth that should be actively corrected since standard of care treatment is required in oncology studies. They worry that
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the experimental drug being tested might
not be the best option for them. There also
might be very real inconvenience associated
with joining a clinical trial, such as the cost
and effort of travel to study sites.
There’s also the simple fact that many
cancer patients are not aware of the trial
opportunities available to them. More than
80 percent of respondents to the Patient Access and Engagement Report said they did
not have enough information about clinical
trials. In my presentation, I looked at current communications practices and trends
in this area, cited examples of companies
at the forefront of increasing clinical trial
awareness and proposed a few suggestions
for better ensuring that people with cancer
have the right information to access the potential benefits of scientific progress.
Biopharma companies have typically created physician resources and advertising to
publicize clinical trials. Collaboration with
advocacy groups and, in certain instances, earned media outreach can also be employed. Interestingly, social media channels
are largely untapped in this area. A 2016
JAMA Oncology article states “… the use
of Twitter for support and prevention dialogues is common. Although some Tweets
are about clinical trials, virtually none are
used for recruitment or provide links to enrollment websites.”
Though not extensive, there are a handful
of companies conducting trial-related outreach through social media channels. And
this summer, the Dana-Farber Cancer Institute and the Broad Institute of MIT and
Harvard announced that by using social media they had enrolled more than 2,000 metastatic breast cancer patients in seven months
into its Metastatic Breast Cancer Project
study. A Dana-Farber press release states,
“By engaging patients directly, the MBC
Project has lowered the barrier to participation for patients thereby accelerating progress in our understanding of genetic basis of
disease.” The release also includes the sentiment of a trial participant who heard about
the trial at a conference: “I was so excited.
Here was something involving and engaging
patients. It was an incredible thing — it finally feels like people are listening to us.”
In another positive development, there is
also greater emphasis being placed on eliciting and sharing feedback from cancer patients on quality of life measures. While “patient-centricity” is the buzzword in industry
circles, patient-centric care cannot happen
without patient-centric information. Over-
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all and progression-free survival endpoints
— often key measures in cancer trials — are
undeniably important. However, we must
recognize that people with cancer also have
vital questions about how their disease and
treatment will affect their day-to-day lives.
Will I be able to work? Will I be tired? Will
I be depressed? How will I feel? These questions are becoming increasingly important
as cancer treatment becomes more long term
and based on oral therapies taken at home rather infusions at a clinic.
The use of patient-reported outcomes, or
PROs, in oncology has
historically lagged other therapeutic areas,
Jill Dosik
but collectively the research, clinical, regulatory and communications communities are making progress in
incorporating patient perspective into scientific advances. There’s movement forward
in clinical practice as adoption of ePRO software allows patients to report issues between
visits. Email alerts can alert nurses anytime a
severe or worsening side symptom is reported. Studies referenced at this year’s ASCO
meeting show that when patients, including
those who are elderly or have late-stage disease, who are receiving active cancer treatment or following cancer surgery are offered
an electronic system to report symptoms,
80-85 percent will regularly provide this information even over long periods of time.
Dr. Ethan Basch, Director of Cancer Outcomes Research Program, Associate Professor, Medicine and Public Health of the University of North Carolina Comprehensive
Cancer Center, and a member of the CancerCare advisory board for the Report, has
written, “In multiple prospective studies, integrating ePROs into routine cancer care has
improved patient-clinician communication,
patient satisfaction, symptom management
and control, and quality of life.”
PROs are also being integrated into cancer
clinical trials. According to Dr. Paul Gustav
Kluetz, of the FDA Office of Hematology
and Oncology Products, “FDA is taking
a look at how to best incorporate adverse
events in drug development. We are now in
a different era of drug development. Patient
voices are more important now.”
For those of us in the healthcare communications field, we should focus on how we
can better enable and respond to those patient voices.
Jill Dosik is President, Global Scientific
Communications and Message Impact, at
GCI Health. 