Improving clinical trial accrual: Malecare’s journey from local support group to advocacy leader

Mar 3, 2017
Improving clinical trial accrual: Malecare’s journey from local support group to advocacy leader

Less than 5% of eligible cancer patients take advantage of the treatment opportunities provided by clinical trials1, says Darryl Mitteldorf, founder of Malecare, revealing the launch of the organization’s new mobile app Cancergraph.

Allowing cancer patients to better track their symptoms, disease states and quality of life in real time, Cancergraph is designed to give a 24/7 record of their experience to improve the dialogue between patient and doctor.

“We wanted to create a method of tracking symptoms that was effortless and enjoyable,” explains Mitteldorf. “Cancergraph encourages people to record their experience and enter clinical trials that provide state of the art treatments. Most patients struggle to find trials that meet their unique disease profile and, eventually, give up searching for appropriate clinical trial openings. Now, instead of asking cancer patients to do all the searching, Cancergraph distills each user’s health data to provide – in real time – only the specific cancer trials that apply to them. Similarly, clinical trial announcements can now be directed solely to patients who meet the exact criteria for accrual.”

Patients are able to choose from a list of more than 200 symptoms and side effects, and have the option to include cancer types, medications and concerns – as well as add disease- or symptom-related photos. The data are then distilled into a report that patients can view on their phone or email to doctors.

Malecare was established in 1997 and was, at that time, one of few US support groups aimed at helping men deal with a diagnosis of, and life with, prostate cancer. Initially providing 60–90-minute support group sessions, Malecare’s model proved highly successful and quickly spread nationwide, making it one of the leading male cancer support organizations in the U.S.

“Men didn’t have a genuine support setting to talk with others in a similar situation to themselves,” notes Mitteldorf. “We were one of the very first to provide men and their families with the valuable advice and help they need to get through their cancer journey.”

Every month, Malecare hosts free podcasts with field specialists to discuss key issues in prostate cancer. It also provides a concierge information service for its followers called Better Ask that takes into consideration each follower’s specific needs and helps them understand what to ask their doctors.

“Our podcasts and Better Ask program reflect exactly what we set out to provide to men with cancer: information that is genuinely useful to each individual,” explains Mitteldorf. “Too often, all men with a type of cancer are grouped together and believed to experience the same issues when in the majority of cases that couldn’t be further from the truth.”

In 2002, Malecare launched its Twice As Many program – an online research database focused on African-American prostate cancer. A year later, the Prostate Cancer Under 50 program was established to help younger men diagnosed with prostate cancer with their unique psycho-social and economic needs. Two years later, Malecare established The National LGBT Cancer Project – the first initiative solely focused on cancer affecting the lesbian, gay, bisexual and transgender community. In 2006, it launched yet another world’s first scheme with its Advanced Prostate Cancer program – the first support program dedicated specifically to men with advanced stage or recurrent disease.

“Many of our programs have grown out of conversations around minority statuses and cancer survivorship,” said Mitteldorf. “We noticed there were a number of sub-groups within the male cancer population being grouped with everyone else but with very different concerns and issues in comparison.”

In 20 years, Malecare has expanded to become a leading voice in the male cancer space – so much so that it’s difficult to see where it can go next. But one thing’s for sure: it will continue to innovate to help reduce the burden of male cancer.


Reference

  1. American Cancer Society (2016). The Basics of Clinical Trials. Available at: http://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/clinical-trial-basics.html (accessed January 2017).
Improving clinical trial accrual: Malecare’s journey from local support group to advocacy leader

Mr. Mitteldorf is an oncology social worker and the founder of Malecare, the national men’s cancer survivor support and advocacy nonprofit organization. He is also the founder of the National LGBT Cancer Project.

Mr. Mitteldorf is an innovator of patient centered program design. He created several of the earliest online cancer survivor support communities and medical information websites. Mr. Mitteldorf is the creator of the symptom and side effect tracker and data collecting mobile app, Cancergraph. He also earned a patent for inventing a radiation treatment quality assurance and data collecting device and method.

As a leading and founding scholar of the study of gay, lesbian, bisexual and transgender psycho-oncology, he has written and published articles in peer-reviewed and popular journals and has lectured and presented research at numerous conferences. As a social worker, Mr. Mitteldorf has led nearly 2,000 prostate cancer support group meetings since 1997. He is a national advocate and policy analyst for patient rights, focusing on underserved communities, clinical trial accrual, patient navigation and affordable access to health care.

Leave a Reply