How Cancer Survivors Make a Difference at PCORI

In typical cancer studies, patients who wish to lend a hand are limited to being research participants. But at PCORI, we pride ourselves on research done differently. Patients are partners, involved every step of the way from choosing research topics to being members of research teams to disseminating the results of the studies we fund. Among those partners are many cancer patients, survivors, and caregivers.

To mark National Cancer Survivors Day, we spoke to several survivors who illustrate the breadth of roles that patients take on at PCORI. These survivors, as well as many others, are making major contributions to advancing PCORI’s mission to help people make informed healthcare decisions and improve healthcare delivery and outcomes.

Meet Some Cancer Survivors Active in PCORI’s Work

Broadening the Discussion

Kermit Heid was drawn to PCORI “because of its patient-centered emphasis.” The 18-year survivor of prostate cancer helps PCORI select research projects for funding. As a three-time Merit Review panelist, he has served on panels with scientists to evaluate a wide range of study proposals. “The scientist-reviewers are very appreciative of the patients’ involvement,” he says. “They understand that survivors broaden the discussion to include the patient perspective.”

Heid has also become a mentor to other patient merit reviewers. “My job is to help new reviewers overcome their lack of confidence in talking with the scientists,” he says. “I help them in terms of what to look for in an application for research funding and how to express their views.” He is also a PCORI Ambassador, showing his enthusiasm for building a community that supports patient-centered research. PCORI’s Ambassador Program offers opportunities for training, partnership, and knowledge sharing.

For many years before Heid came to PCORI, he advocated for prostate cancer awareness and research funding. He worked to raise funds for prostate cancer research with an organization called the National Prostate Cancer Coalition (now Zero—The End of Prostate Cancer), and he joined peer review panels for the Prostate Cancer Research Program. “In 2001, I did a solo transcontinental bike ride as an awareness raiser,” he says. “I was 68 at the time.” However, he was concerned that much prostate cancer research fails to concentrate on patient needs and desires.

Addressing More Questions

Jane Perlmutter’s many years of advocacy for breast cancer research—and for patient engagement in such research—made PCORI a natural fit for her. Like Heid, Perlmutter has reviewed research proposals for PCORI as a Merit Reviewer. Perlmutter had been diagnosed with breast cancer in 1985 and then became an advocate, working to increase attention to patients’ voices in breast cancer research. In 2013, she was involved in a small roundtable discussion of whether and how PCORI should pursue a better understanding of how to treat a very early form of breast cancer called ductal carcinoma in situ (DCIS).

Perlmutter has since become even more involved in PCORI, by joining the Advisory Panel on Patient Engagement. The panel meets three times a year to guide PCORI’s work, to ensure we follow the highest standards for patient engagement and a culture of patient-centeredness. Also, like Heid, Perlmutter is a PCORI Ambassador.

“There remain many questions about how to improve currently available cancer therapies that are not being addressed but fit well into PCORI’s portfolio,” she says. “For example, learning how to optimize dosing, scheduling, and sequencing of therapies could significantly improve outcomes and reduce side effects.”

Incorporating Patients’ Perspectives

Cheryl Jernigan has learned from her own breast cancer, her husband’s prostate and tonsil cancers, and the experiences of the many cancer survivors with whom she has worked. A 20-year breast cancer survivor and health advocate, she advises a network within PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is a PCORI initiative to harness the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.

To take advantage of her knowledge as a patient, caregiver, and advocate, Jernigan became the lead patient advisor for the Greater Plains Collaborative (GPC), one of PCORnet’s Clinical Data Research Networks. Using its collected data, GPC has already developed several projects, including a survey of women diagnosed with breast cancer. That survey that is now being used in several research studies to improve care.

“My role and goal has been to help create and lead efforts to ensure patients’ perspectives are incorporated throughout GPC’s organizational and research decision-making process,” she says. “I have a wealth of knowledge and not-always-so-common sense about what patients often feel is most important to them. That includes recognizing that no two patients’ experiences and beliefs are the same.”

Learning from a Battery of Cancers

Individual research projects also need patient partners, to help determine which questions to ask and how to ask them. One of our large pragmatic clinical trials is lucky to have Charles Florsheim onboard, who comes with a wealth of experience in health advocacy and, unfortunately, an unusually broad range of personal experiences with cancer.

Florsheim was diagnosed in 2008 with prostate cancer and underwent surgery. When he was unhappy with the outcome of a subsequent surgery related to nerve damage from the prostate surgery, he gathered his medical records to transfer to another hospital. “I was looking through my medical records when I came across my preoperative chest x-ray report for the second surgery and read that there was a suspicious area in my right lung and a recommendation that I have a CT scan.” Subsequent tests proved it was early-stage lung cancer.

After Florsheim, who had never smoked, had surgery to remove two lobes of his right lung, he became an advocate for lung cancer research, working with several patient groups and advising research studies. For PCORI, he is a patient partner on a pragmatic clinical trial of screening for early-stage lung cancer. “There are very few survivors of lung cancer,” he says. “There’s less than a 20-percent survival rate five years after diagnosis. I felt like I survived this for a reason and wanted to give back.”

A year ago, Florsheim had surgery for a third cancer: melanoma in his neck. Being a survivor of three cancers lets him bring a unique patient perspective to research studies, Florsheim says. “As a survivor, you know what you went through and what was important to you and what motivates you to participate in a clinical trial,” he says. “To attract patients, research teams need to answer: Is this clinical trial relevant to me so that I would want to participate? How is this going to benefit me?”

Preparing for Engagement

Patients with advocacy experience bring the advantages of both training and perspective to their work at PCORI. For the last 15 years, Mark Gorman has been an advocate for improving the quality of cancer care. He had been diagnosed in 1990 with early-stage melanoma. Despite being given good odds of no further tumors, his cancer had spread to his liver and spleen by 1998. Doctors found additional offshoots in 2003 and 2004, and another in 2014.

Before becoming a patient partner in a PCORI-funded pragmatic clinical study, Gorman worked as an advocate at the National Coalition for Cancer Survivorship. “For me, the most compelling part of improving the quality of health care is trying to raise patient-centeredness,” he says.

Gorman notes that effective advocacy requires training. “You can’t go into the lobby of a clinical center and just start talking to people and recruit them to be the patient voice,” he says. Advocacy skills include communicating, finding information, solving problems, negotiating, decision making, and standing up for your rights.

When a researcher invited Gorman to join a patient advisory group for a PCORI-funded study of a treatment used during chemotherapy to fight infections, the connection seemed natural. “At all different levels, research should incorporate views from the stakeholders who will actually be the end users of the results,” he says.

Shaping Research

We are grateful for the contributions of cancer survivors to the many dimensions of PCORI’s work. We also want to acknowledge that many PCORI staff members, including both of us, have personal experience with cancer, either as a patient and survivor or caregiver or both. At PCORI, we have the opportunity to shape clinical research and, as a result, healthcare delivery, so that it meets the needs of patients and those who care for them.