The accidental advocate – from leukaemia patient to leader in patient advocacy

When West German-born Jan Geissler graduated from Aston University, Birmingham, in 1999 with a business degree, he began a career developing and marketing new technologies. At Bertelsmann and Vodafone he spearheaded teams developing digital paper and mobile TV. The future looked bright—until he became ill and everything changed.

A routine checkup in 2001 led to a diagnosis of chronic myeloid leukaemia (CML), a cancer of the white blood cells. The picture was bleak: mortality rates were high, and the side effects of treatment often severe. He scoured the Web for better options and he learned about a small German study of two investigational drugs, which ultimately saved his life.

Before finally coming across the information, which was posted by a woman in Singapore whose husband also had CML, Geissler had grown discouraged.

“I talked to five doctors,” he says, “and most had no clue about the newest trials, the newest data or the newest therapies.”

To help other patients in his position, he started Leukaemie-Online, a German platform for reporting data from clinical trials in patient-friendly language. “I slipped into advocacy—I set it up over a weekend when I had the flu,” he says. “I was surprised that it worked!”

Since then he’s steadily increased his work in patient advocacy. In 2003, he co-founded the European Cancer Patients Coalition (ECPC), now a network of more than 300 patient groups. In 2005, he co-founded CML Advocates, a global network of leukaemia patient organizations. With his advocacy role expanding, he quit his job in 2008 to serve as director of ECPC. “It meant taking a huge cut in salary,” he says, “but the work was so fulfilling that it didn’t matter.”

Since 2012, Geissler has directed the Brussels-based European Patients Academy on Therapeutic Innovation (EUPATI), a five-year, €10m​ public-private partnership spanning 12 countries and joining patients, industry, and academia with the goal of seeding the base of patients with life-changing diseases who are knowledgeable in the process of new medicines research and development—to ensure that the patient perspective is fully integrated into that process.

The lack of such patient input has negative consequences for disease treatment as well as healthcare overall, Geissler argues.

“The rate of new drugs coming to market has been decreasing since the 1950s—despite the discovery of DNA, genome sequencing, Dolly the sheep, you name it,” he says. “We need to rethink how we increase real innovation. We know the current healthcare system is broken, and a lot of money is wasted on poorly designed research.”

International polls have revealed fear and lack of trust increasingly typify the relationship between the public and the pharmaceutical industry. Besides poor study design, these factors hamper patient participation in clinical trials; only about 10 percent of cancer patients enroll in studies and 75 percent of phase II-IV studies are delayed by slow patient recruitment.

By the end of 2016, EUPATI will train 100 patient advocates from 12 countries across Europe in areas including medicines development, testing, regulation and safety.

Margaret McDonald, former lay member of the West of Scotland Research Ethics Committee based in Glasgow Royal Infirmary, is among the first group of course participants. She has already used her training in her current role as patient representative on the Scottish Government’s Prescription for Excellence Reference Group.

“A patient advocate should have sufficient knowledge to be judged proficient and treated as an equal in a clinical environment or committee setting,” she explains. “The patient advocate can bring a holistic, whole person viewpoint which often experts, clinicians or statisticians who have specific training and knowledge can overlook,” she says.

In addition to training 100 patient advocates, EUPATI plans to reach up to 12,000 patient advocates across Europe with an online toolbox and another 100,000 interested persons with its Internet library, with all materials available in seven languages.

“Looking at 10 years from now,” Geissler says, “I hope that no research is happening without patient input in the design phase, to make sure it meets true patient needs—and also creates a sustainable healthcare system. We know that the current system of very little output and skyrocketing drug prices just isn’t sustainable.”