Meaningful clinical research that delivers real solutions relies on understanding that behind every “n” in the number of people studied, is a person.
That’s the view of the Bladder Cancer Advocacy Network (BCAN), founded by bladder cancer patient, John Quale, and his wife, Diane, in 2005, which places a heavy emphasis on patient involvement in clinical trials.
Stephanie Chisolm, director of education and research at BCAN, says, “There are a lot of stats in research, but each ‘n’ is a person, and each person is an individual with people who love and care for them.”
“The impact of the disease on that person and their family is huge. We always want to drive that forward with our researchers and scientists by bringing that patient story to the forefront.” BCAN has trained around 40 patients to act as research patient advocate advisors.
Patients and researchers attend online video meetings to develop research questions, some of which are now being brought forward into studies.
BCAN also asks its “patients survey network” of 1,500 people what questions they would like to see addressed. Since 2018, BCAN supports a Patient-Centered Clinical Research Young Investigator Award inviting proposals that seek to provide the answers.
“If the impact on the patient is considered in designing a clinical trial, you are likely to have better adherence or enrolment.”
Bringing the patient voice into research
Ensuring the patient’s voice is understood by clinicians and researchers is a core tenet of the group’s annual Think Tank scientific meeting, which started in 2006.
“This is the longest running meeting dedicated solely to bladder cancer in the US,” says Stephanie, adding that 300 people are expected to attend this year.
“Every year, we feature patient stories during our welcome dinner. It brings clinicians and experts back to the fact that behind the statistics and what they see in the laboratory, there are people with real lives who are impacted by this disease.”
Stephanie explains that the patient advocacy group also believes that patients should be involved in their own care throughout the diagnostic and treatment pathways.
“Some of the treatments significantly affect the quality of life. Having your bladder removed is a life-changing experience,” she notes.
“It can have an impact on continence and sexual function. We assume all doctors talk about this, but they don’t always, particularly with the older patients. There are many things that patients need to be aware of as they are going through treatment, but often they don’t think about some of these impactful issues, until after.”
“It’s important to ensure patients have all the information they need to participate in shared decision making,” declares Stephanie, adding that the group has trained patient volunteers in their Survivor 2 Survivor network who do share their experiences.
“We connect them with newly diagnosed people who want to get the inside scoop and find out what they should ask their doctor before they make any treatment decisions,” she goes on to say.
“It’s about enabling people to have those conversations with their healthcare team so they can ask the right questions.”
All BCAN’s programs have one aim, Stephanie comments, and that is to create an environment for patient-centered care.
“Advocacy, research, and education are the three pillars of our mission. We advocate on behalf of patients and for more research so that more treatments are available, and we inform and educate patients, so we can help to support them,” she says.