Program provides forum for input from patients and their families
Toni Vasquez Jordan’s experience as a breast cancer survivor has provided valuable insight for Ishwaria Subbiah, M.D., as she develops clinical trials and develops ways to enhance patient care.
In the world of science and medicine, they were a perfect match.
Ishwaria Subbiah, M.D., was an expert on the best ways to maintain patient contact between hospital visits. But she knew she was missing an important element in her work – patient input.
MD Anderson Office Manager Toni Vasquez Jordan didn’t have Subbiah’s education or training. But she was a breast cancer survivor. She appreciated the importance of patient tracking, yet she had strong feelings about the many telephone surveys she was asked to complete.
Subbiah, assistant professor of Palliative, Rehabilitation and Integrative Medicine, spotted Jordan at a meeting of the Patient and Family Advisor Program. Founded in 2014, the program seeks to improve the patient experience by providing a forum for patients’ and families’ voices to be heard and understood.
After hearing Jordan’s survey concerns, Subbiah introduced herself.
“Do you mind if I pick your brain?” she asked Jordan. “Don’t sugar-coat anything.”
Sharing the cancer patient perspective
That evening they hashed out ways to improve the questionnaires. Their ongoing collaboration has resulted in better supportive care for patients, a more enlightened medical staff, and proof that a program designed to foster communication among patients, their families and staff truly works.
When Subbiah found Jordan, the palliative care doctor was working on two grant applications and the design of a clinical trial. All three projects focused on telephone and electronic patient surveys and best practices for patient support between clinic visits.
That fortuitous meeting was the beginning of what has been a beautiful working relationship.
It turned out that Jordan worked just one floor above Subbiah at MD Anderson. Jordan shared her cancer experiences over the next weeks and months, usually over coffee.
“The proximity to coffee is always helpful,” Subbiah jokes.
Sometimes they shared more – photos of their children, stories about their spouses, their passion to help MD Anderson and alleviate suffering.
A breast cancer diagnosis and a BRCA2 gene mutation
When Jordan found her breast lump three years ago, she told Subbiah, she tried not to jump to conclusions. Her husband, already upset about the recent loss of his mother, burst into tears. The cancer diagnosis, she realized, was not just a hand grenade tossed into her life, but also into the lives of her husband and three children.
During her treatment, Jordan tried to stay calm, appreciate the care she was getting and accept life as it came. She soon learned she had the BRCA2 gene mutation, which raises the risk of breast and ovarian cancer. She would need a hysterectomy in addition to her breast surgeries. Even worse, her two daughters were at risk for the mutation, too.
It was one of those career-defining moments
Integrating patient feedback to improve a clinical trial
As Jordan talked about her recovery and the lessons learned, she remained remarkably calm – until she described those patient surveys. Clearly, they tested her patience. Instead of 50 questions, there should be 10 or 12, she said. She considered the questions that required numeric answers too robotic. Finally, she said, sometimes the questions simply missed the mark. She had plenty of concerns related to cancer, and she was worried about her daughters. But too often the surveys didn’t touch on the subjects she cared most about.
Subbiah took Jordan’s comments to heart and redesigned the clinical trial that dealt with integrated, supportive care for patients in early-stage trials. Also, Subbiah reworked her grant proposals. The first one already has been funded by the American Cancer Society.
“It was one of those career-defining moments,” Subbiah says.
The second grant – an application to the American Society of Clinical Oncology – is still pending, but if it comes through, it will be a triumphant moment for Subbiah and Jordan, too. Both their names are on the grant. Jordan boosted their chances with a letter of support, saying she was grateful the proposed study incorporates the human element of telephone calls and the give and take of real conversations in addition to the surveys.
As Jordan wrote, “I think there will be many patients who look forward to these calls. And you and the medical team will find out much earlier if something is not right.”
That’s what it’s all about, Subbiah says. Supporting patients. Identifying problems. Extending lives.
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