Jan Geissler is the director of EUPATI. Led by the European Patients' Forum, this project aims to educate patients about research and development of medicines. Jan’s story starts with his diagnosis in 2001.

Leukaemia

“When I was diagnosed in 2001 with chronic myeloid leukaemia, I was 28, had just finished studies and was working hard in a job in an international environment. Like most cancer patients, I was totally caught by surprise by the diagnosis”, says Jan Geissler. “Luckily, I spoke very good English, and immediately went online to get ideas and opinions from people.”

New treatment

“I was lucky to find a yahoo forum run by a woman in Singapore. She put patient-friendly summaries of medical literature and conference news online. She reviewed data on a new treatment being developed. So I wrote to the lead investigators in the field and found an investigator in Germany some 400 km from where I live. He was recruiting for a Phase II dose ranging trial for 25 patients with two experimental drugs. I decided against standard treatment, which was bone marrow transplant, and joined the trial.”

Popular blog

Jan continues: “When I joined, I was very connected to the Singapore forum, but there was nothing in German. Because I was pretty technology savvy (AKA, a geek), I installed an open-source platform where I thought I could share what I knew by translating things from English. It ended up being an online forum coupled with something like a blog, which in 2001 was a new concept… Very quickly, other patients with chronic myeloid leukaemia found it, Germans who could read it in their own language, and the forum became quite popular very quickly.”

Patient advocate

“As clinical experience with the new drugs was very premature at that time, I had no idea it would work as well as it did”, says Jan. As the treatment started to work, he continued down the road of advocacy instead of going back to business or normal life. “I would say two things happened – first I saw the need and demand of patients to better understand their treatments and options.”

“Secondly, Novartis wanted to bring together global patient leaders so we could network and share best practice in patient advocacy. In 2003 they brought together 23 of us from all over the world. For me, that was the foundation of seeing the importance of international work, of sharing best practices, and to help each other grow. That meeting became annual, and we were able to design our own agendas for the meetings and invite speakers and patient leaders from all over the world.”

EUPATI project

Today, Jan is the director of the EUPATI project, a team of some 33 organizations, with partners from patient organizations, universities, not-for-profit organisations, along with many European pharmaceutical companies.

“Not having any prior medical education, I learned the hard way how to engage with researchers. I evolved from an interested patient to an informed patient to an advocate for patients who helps researchers define their questions. But my self-education road took me several years.” EUPATI is trying to make it easier for people to engage in research in their disease area in their country.

No guinea pig

The rationale of EUPATI is that patients can play a key role in scientific research, but may lack education to participate in R&D processes. Jan Geissler: “As a patient advocate, I see a hesitance to enter clinical trials from the public due to fear and misconceptions. We hope to make it more clear and understandable about research, that it is not about being a guinea pig. Yes, there are clearly risks and benefits, but we can talk rationally about that. We hope when you do a search in the not too distant future, EUPATI will be in the first ten hits to come up to help people understand in an objective way what medicines research and development is all about.”

Related projects and further reading

This article was adapted from Rob Camp’s interview with Jan Geissler; you can read the long version on the EUPATI website.

Read more about the EUPATI project on the www.HorizonHealth.eu project page.

Our In Focus article ‘Power to the patient’ discusses recent developments in personalised medicine.