Jill Dosik Jill Dosik 
The 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.”

O'Dwyer's October '16 Healthcare & Medical PR MagazineThis article is featured in O'Dwyer's Oct. '16 Healthcare & Medical PR Magazine

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 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. Overall 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, 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.

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Jill Dosik is President, Global Scientific Communications and Message Impact, at GCI Health.